What does caregiving feel like?

What does caregiving feel like?

When people talk about overcoming disease or disability to live an incredible life, so often the caregivers are left out of the story.

Many caregivers don’t identify as caregivers — we’re so absorbed in the needs of whoever we’re caring for, we forget what it’s like to be us. We take our own work for granted sometimes.

What does it feel like to be you?


Exhausted. Learnt bucket loads of patience over past 8 years. Lonely. Really grateful for current medical schemes in Australia. Sad for those without same privilege.

Janet


I don’t think people want to feel the way i do.

To be me is to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.

This is only for this week. Never would’ve i thought that being a full time unpaid caregiver to my parents for over 21 yrs would be this hard.

Bob


How does it feel to be me? Wow, that’s a challenge. Most of the time, I really like myself. I like the fact that I don’t cringe in the face of adversity. I meet it head on. I believe firmly that there’s no such thing as a stupid question. I also believe in repeating my question to many people in order to get an understanding of the best course of action for my family and myself.

I have learned that taking care of myself is as vital as taking care of my loved ones. I have made conscious decisions in what I eat every day. I take the time to walk, often with music that makes me smile. That’s a very important thing too. Music must be able to make you smile. I avoid music that makes me frown. I see a counselor to take care of my mental health too. I am not afraid to admit this need.

I know without a doubt that I was blessed with a kind heart and do my best to be nice to others every day.

Mimi


I’m a partial caregiver to my married son in Cal. I’m in Dallas. He’s post 2 liver transplants 17 yrs again at 16 yr, severe ulcerative colitis and depression with suicidal thoughts. His wife has trouble understanding so he calls me. I’m an RN also. I’ve flown out when he’s in depression crisis. It’s very frustrating because of distance and stubbornness. Feel helpless over phone.

I’m caregiver also to my 30yr old daughter who is 3 yr post third liver and kidney transplant. She shattered ankle over Xmas in car wreck had 3 surgeries and 4 admissions. That just added more stress. This daughter doesn’t work goes to school part time, too afraid to do too much alone, no friends, no social life and messy to boot. She gets SSI and still on our insurance which is blessing. But she’s my biggest headache. My other two younger daughters have been out on their own since college.

Then they diagnosed my husband last summer with possible dementia. He’s 64 and retest this summer. Been told it might just be him. God willing.

I had to quit work as home health RN because it was too much stress to caregiver at work and at home. I feel lost very alone and all I want to do is complain to people. I go to counselor, take anti depressants and anti anxiety pills. Sometimes I just want to scream or curl up in a ball and sleep. Have other health issues myself as we all seem to and I feel like my tolerance is slim.

Becky


No matter how much support I receive, I still walk this path alone. So I would say a general feeling of isolation is how it feels to be me.

Melissa


I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.

Barb


Before I became my disabled husband’s caregiver, I was my mother’s family caregiver (9 years), and my twin grandchildren’s caregiver and guardian (7 years). I am my disabled husband’s caregiver now (close to 4 years). From this experience, I learned that I need to keep doing what I love, and that is to write. So I’ve continued to make my writing career a priority. This decision led me to write four books for family caregivers. Another book, about raising grandchildren, is in production now. Writing makes me happy and when I’m happy, my husband is happy. He is my biggest fan and wants me to keep writing. I will admit, however, that two roles—caregiver and author—keep me jumping. Writing can be difficult because I’m constantly interrupted. Thankfully, I am a disciplined author and have good work habits. These work habits carry over to caregiving.

Harriet


It’s an honor to be able to be my wife’s caregiver and I take pride in how I take care of her. I appreciate the kind words from family and friends about how well I do with my caring for me wife.

On the flip side though, I’m tired and I don’t know what my identity is anymore. I’m so wrapped up in her needs I admit that mine take a back seat, in fact they’re in the trunk. Please understand that I’m not bitter, she didn’t ask for MS.

I know that I should get some help, but in my mind who’s going to do it, and better yet who’s going to pay for it. So I’ll do what I always do and keep moving forward, I realize this is on me and for me to get the help I need. I just wish that we can go back before MS and stay there, when the most difficult thing to do was to figure out what to have for dinner. Thanks for letting me vent a little.

John


This is how it feels to be me.

I first became a caregiver in 2011. When I started I was in a size 10. Now I’m in a 14/16. Stress shows in my face and body. I look in the mirror and don’t even recognize this person. I was married and just became a divorced woman.

I have found out that I cannot depend on my siblings to help take care of our Mother. They have not stepped up at all. I feel angry and resentful. But I also feel strong because although it’s the hardest thing I’ve ever done and I’m doing it.

My Mother battles a horrible disease and it’s in my face everyday. My siblings have not seen one ounce. I know I’m doing the best I can and I know I’m helping my Mother that once helped me. You never know what you can do if you don’t try. And you do whatever it takes when it gets tough.

God has not abandoned me but people have. It is very isolated when caregiving and you are no longer “available ” to others the way they expect or want you to be. You will sacrifice much. And it’s hard to find time to take care of your own needs. But I’m working on that.

I plan to find time to go for a walk everyday. And to drink the water I need everyday. And lose the stress weight. Cortisol stress hormone please stop attacking me. I’m already battling LBD.

Anonymous

Is there a better term for caregiver burden?

Is there a better term for caregiver burden?

You’ve heard the term “caregiver burden”, right? It’s the stress and strain that comes with caring for someone who is ill, elderly, or disabled. Lots of people don’t really like it, since it can easily seem like the person you’re caring for is a burden.

I was thinking about this while reading the story of The Perfect Servant. She’s really honest about what a burden caregiving can be, but it’s also clear that the love her and her husband share is incredible. We don’t want the person we’re caring for to feel like they’re a burden or to further stigmatize their condition.

Is there a better term? How can we talk about the stress of caregiving without placing blame on the person we care for?


I am reaching a new level of care for Deb as she is incontinent of bowel and bladder to the point that she has lost all control. Her MS is putting her body thru some new changes. Her fatigue is such that a lift may now be getting close. My own ability to care for her as a 66 year old man is being called into question. I bring this up to address the word “burden”. Is it now a burden to care for a woman I have been married to for over 32 years, who has always given more to me than me to her and has been in a w/c for over 7 years and I am her nearly full time caregiver. To say it is not burdensome physically and emotionally is naïve and dishonest. However, this burden is filled with that intangible gift of love we have been given and I want to share and honor that with her.

Jerry



It’s like I have been trying to instill in my son, there can’t be blame. It’s an awful word to start with, when you consider the meaning. Things happen, it’s called life. It’s called what God and Jesus hand to you and expect you to do right by. I firmly believe in both God and Jesus. God picks who we are, boy or girl, short or tall, autistic or not. Jesus gives us our heart and soul, and expects us to love unconditionally always.

My son didn’t ask to be autistic any more than my dad asked to suddenly grow weak and unable to take care of himself 100% of the time. I certainly did not ask to deal with chronic pain, PTSD, have my neck fused, and more. Blaming or saying someone is a burden disrespects God, Jesus, and the person who has become dependent on others in daily life.

I would encourage someone to seek counseling because it really helps. If not counseling, find that someone who would not mind being a sounding board. Not to give advice as much as there to listen to the struggles, the
fears, the joys and the frustrations of being a caregiver.

Most important of all, find that time for yourself. 15 minutes here, 15 minutes there. Read, listen to music, watch a favorite tv show, it doesn’t matter as long as you are giving yourself time to focus on something other than the person you are caring for. Balance is key to not feeling the need to use the word blame.

Mimi


How about “moral responsibility”? Caregiving applies to the circumstance but the heavy feeling of a burden comes from outside the role of a caregiver. These emotions stem from a desire to believe in hope for humanity. That no matter who or what we are, when faced with a need, at the stake of human condition, we will take action… We care cause we relate to the fact that might easily be the one in need and I hope the same moral conflict in others will still exist and someone will be kind enough to help me!

Ashley


As a caregiver to a loved one, there are different levels of emotion before the sense of burden comes along. And once it does, then there’s guilt for feeling burdened. That comes from not getting those much needed breaks for ourselves.

Teresa


There is a wide range of emotions that come long before one falls into the ‘burden-guilt’ trap…but something we don’t talk about often for caregivers is the need for self-care. I was fortunate enough to hear an interview with a caregiver (on CBC – Sunday Edition) just a few months before my caregiving journey started in earnest. I learned a few things: the importance of accepting help and the importance of taking time for myself. I’ve only faltered when I didn’t do one or the other (or both!)

Honestly – I don’t feel burden or ‘why me’ … I feel blessed that I have so much support in my life. For my husband, I only feel love. As much as I’ve been his caregiver, he is my rock in so many other things.

I know I am so very fortunate. and for that I’m grateful. For me, there is no burden, just love and gratitude.

Sylvia



I am a nurse practitioner. In the field of nursing we call it “burnout” when the burdens of caring and providing for others fatigues you to the point of exhaustion and inability to often meet your and/or your family’s needs.

Donna


It is a challenge.
It is a burden.
Above all of that it is a responsibility.
Caregiver Responsibilities.
We are the capeless heroes that never get a casserole.

Kim


I have given care for years to various ones. First as an RN and then as a mom who had a terminally ill child, then, my parents. Still in the midst of caring for my mom. I liken the fatigue I felt with my son, as PTSD. I didn’t realize it at the time. Burnout is another term I’ve used. Fatigue is yet another term. I don’t think I’ve ever placed blame on the person I’m caring for, but more on myself for not being able to meet all the challenges.

I love what I do, I would not want it any other way. What we, as caregivers extraordinaire, need is the ability to find time away to regroup and recharge. We need the ability to not go broke in caring for our loved ones. That alone, would remove stress from our lives. Tax laws should be changed to give us a break on this. We are keeping our loved ones from becoming a burden on society on the tax payers dime. I try to remember that I am serving my Lord and Savior as I care for my mom. I am honoring my parents, as is commanded. May God bless each of you, as you care for your loved ones.

Sherelyn



It does seem like any concern is a complaint when it is not. It is just a plea for how something can be done better or easier for both. This is definitely a learning process but one that has no room for error on either side.

Diane


I place all the blame on myself, why not everyone else does. I’ve been taking care of my parents for 20 plus years, I even bought the house next door to them for convenience.

My dad passed away last March on my mom’s birthday so now it’s just mom. She has COPD and its very bad. She only goes on 3 rooms of her house and has anxiety issues that prevent her from leaving her house, period. This is a constant battle with her because she does not allow me to be gone because she will panic. My family is headed out the door at the moment to go on a much needed fishing trip and I get left behind. I do not resent my mother for this.

I am sitting here waiting for her to ring the wireless door bell I have for her letting me know she up so I can do our daily care routine, I do not resent her for this. I love my mother and would never leave her in a million years, but it’s exhausting at times because she has no zest for life, all she wants to do is smoke (she’s been quit for a while now ) she asks and I say no, she resents me for this, I feel guilty because I am not giving her what she wants, it’s my fault she’s not happy and she lets me know about it to, this is where I resent her attitude towards me.

If I give on, she will end up in the hospital just like every time before and its my fault, my family says so, and so do I. Its not burn out exactly, it’s not knowing what to do when she gets like this and no matter what choice I make it comes down to her health or her happiness.

Genie


My burnout and frustrations came from family not working with me as a team to help take care of Mom … And accusing, ridiculing and blaming me for the dysfunction.

Linda


I’ve been a caregiver for six years for my,now, 91 year old mom. Once she said to me; “I feel like I’m a burden to you.” I knew that denying that would be a lie so I said in a soft and loving way; “yes, sometimes caring for you is a burden just like I was to you when I was young and you were raising me as a single mother. But that doesn’t mean we give up just because something is challenging. Our love, commitment and loyalty means we stay and we persevere. My dog got me up three times last night and that was a burden but that doesn’t mean I give her away or that I don’t love her.”

My mom nodded and replied; “I’m so grateful to you.” And my response was; “I love you and I’ll always be here for you.” Something my two older sisters know nothing about.

Kellie


Caregiver stress syndrome is a much better term. There are degrees of it just like any other syndrome. Burden allows the greater society to continue to ‘blame the victim’. We blame the person who took on the role of caring for another person instead of providing adequate services and supports.

And for those who don’t want to be called caregiver: this is why we do it: in order to access services and supports we have to call the person giving of their love, time and effort something. The political will to support ‘grand daughter’ or ‘husband’ or ‘wife’ doesn’t exist in the US.

Those of us in caregiving research often wore the same shoes and walked the path. We use the term caregiving or care partner or dyadic care in order to try to get the local, state and federal funding to assist those who provide care. We don’t do it without thought.

Jeananne


It is what it is. And it’s not the patients fault, but we have to acknowledge the true weight of what caregivers go through.

Michaela


You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.

Penny


 

How did we become family caregivers?

How did we become family caregivers?

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


I became a caregiver when I realized no one else was going to be able to fill the need.

I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.

I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.

Andrea


Not a choice an obligation to the ones we love

Maggie


I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job.  It was never a “job” as I had promised Mom to take care of her.  I was able to do so as I am disabled so was not working.

The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help.  The course the VA sent me through was also a huge help.

Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.

JeanAnn


I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.

Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.

Barbara


I started caregiving in 2008. I went to work for a company that cared for folks with developmental​ disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.

I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.

I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments​, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.

Thanks for reading and reaching out.

Kathy


I became a caregiver when my wife was diagnosed with Alzheimer’s.

There was no choice in the matter, I did what a husband is suppose to do.

Duane


I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.

Peggy


In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.

For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked.  I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.

Then Mother died, and my husband was given a terminal diagnosis.  In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations.  Gone. Now I lead hikes…and read emails on “caregiving”.

Marj


11 year ago my wife had a liver transplant, now we’re told she​ has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.

Douglas


Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.

In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.

Harriet


When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.

Bruce


It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving. 🙃

Melissa


I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.

My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.

That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment  in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.

She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford  to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.

I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.

Theresa


I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.

Linda


I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.

When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!

Lisa


I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.

Carol

Is becoming a caregiver a choice?

Is becoming a caregiver a choice?

Becoming a caregiver just happened

I was 23, had a five year old and a 2 month old. My mother was diagnosed with stage IV colon cancer, and her “husband” decided he didn’t want to clean up crap, and I was already an “expert”. Sadly, she passed away 2 months later, and her “husband” left before her funeral. Look ahead 30 years later, and it was my turn at stage II colon cancer, and my two girls were thrust into being my caregivers. My oldest had three little ones under 10, including a newborn. My hope is that the pattern doesn’t continue. But … if it does, I know my grand daughters will pull their sleeves up and take care of their mom, too. – Joyce

It just happened, my sister asked if I wanted to quit my job to take care of mom and I said yes. I had 5 great years with her before she passed. 😇 – Terry

I went to visit my mother after I graduated high school and her caregiver said “oh thank god you’re here” and left and never came back!! So I got thrown into the role and did it for 10 years!! – Koren

It happened but i am thankful because no one would’ve took as good of care of them as me. God bless the staff at their nursing home. – Stacey

Just happened as my grandmother got financially destroyed by her youngest child/son! Her place was so in ruins & she was fallin fast in her health dementia/alzheimer’s! Its been a constant uphill battle not only with having to redo her home, but taking care of her & her health! Its 6am to midnight daily! I agree, we are so tired, my wife is now by my side through this journey! Never give up! 😥☝🏽🙏🏽☝🏽❤️ – Duane

My 26 year old daughter requires 24/7 care now due to Muscular Dystrophy. She does have nurses, but I am also a care giver for her. I had to give up my career. I love her more than anything in the world – but I will be honest – I am tired. I am 63, went through breast cancer treatment two years ago. I can’t afford the medical coverage or the medications. I have about $8000 worth of dental work that needs to be done. I took care of both of my parents until they passed. I have taken care of everyone through the years and not having any brothers or sisters – I have no one to take care of me. Yep. I am tired. – Debi

I was 25 newly married and my mother was getting lost driving to the same job she had for 20 years. 3 years later I’m sitting here frustrated I can’t get the stupid railing together from her falling out of bed. She doesn’t even know I’m her daughter these days. – Shanna

It just happened for me, when my husband had an accident and lost his job and went into severe depression. Neither of us asked for it. We don’t really want it now, either, but we have learned to accept. We are some of the lucky ones, as we are doing things that we love. Hubby potters in his garden, and in his shed making things. I do some sewing, making things for family and others. But, oh my, the years have taken their toll. Hubby’s physical health has taken a battering, and my physical and mental health has too……after all the stress of having to make some very big decisions on my own, which was new to me. We are coming out the other side, not sure of what the future will be for us, yet. Hubby is nearly retiring age, but I do hope his mental health continues to improve. – June

It just happened, I was a friend and saw someone needed help. I think God puts people in our lives for many different reasons and this must be the reason I’m there. – Mary

In my case, it just happened. I’m blessed that I am able to stay full time with my dad which enables him to stay in his home. My mother is in a nursing home and we visit daily. – Marie

An old roommate suggested I try in home care and that was 3 years ago. Now I’m HCA certified working towards CNA. – Jean

My son was born with a rare genetic disease; and now he is 22 years old and he is living at home and I was awarded the privilege to be his full time caregiver. – Brenda

It just happened. My husband had 2 strokes one week apart. I wasn’t prepared. – Tanya

It just happened….although frustrating at times, I wouldn’t have it any other way. Blessed to still have all these moments with my mom. – Penny

At a early age I had to take care of my little brother ,then my great Grandma, just over the years I became a CNA and Caregiver. – Anna

My husband became a wounded veteran. Life happens. We don’t choose for illness, disability, or old age to remove ability to daily living activities. It just happened to all of us. – Mary

When I got married and spoke my vows “In sickness and in health for richer or poorer until death do us part”. It’s been 8 years since my Bill’s illness and 5.5 years since he passed away. I had no help and held down my full-time job in the process and I was his primary caregiver and I’d do it all over again if I had to. – Lucy

It just happened! I did work as a caregiver and companion for the elderly about 11 years ago. Here I am doing it for my husband, and soon my mother. – Donna

My daughter was fell ill five years and was undiagnosed two of the five years. We found she had a rare genetic syndrome. She was only 13-1/2 at the time. Normal child until then. Something came and took her in the night…it seems. Sad, we try all the time to help her come back to us. But it is as if she is missing and everyone called off looking for her because she is rare and in a league of her own. I must cry every single day. The amount of daily grief is almost unbearable. But even worse is knowing how much she has lost. How much she suffers. How very hopeless the future looks. We just keep moving forward and praying for answers. Praying for her to recover. Praying for her not to suffer. It’s not as if I can say she lead a long happy life…ugh. This is her story and she is my hero. I pray God gives me the strength to continue walking with her until we get back her life. – Faith

It just naturally happened and was such a blessing. It allowed me to have more time with my best friend. Even on the hardest days, it helped me grow. Then God chose him to go to heaven. This is much harder now not being one. – Christy

Just happened found out my son had muscular dystrophy at 5 but our lives changed most at 9 when he lost the ability to walk. And now he is 20 and full time care. But I wouldn’t change a thing. This world could not handle my boy on his feet the place would be on fire. His wheels keep him grounded. – Erika

Just happened when hubby got cancer and now terminal. Then Mom got sick, too, and lives with us. So I have two now. – Cathleen

It happened when my husband was diagnosed with Alzheimers 4 years ago. We don’t have any kids so I am the one who is here for him. – Lynne

It just happened when my husband’s dementia was diagnosed and got worse. I love him and would do anything for him “till death do us part”. – Jenny

Caregiving just happened. I was 12 when my mom had her first massive heart attack and open heart surgery. When I was 18 I became a live in caregiver for a lady and lived with her almost 7yrs. Afterwards I became a live in for another lady for almost 4yrs. I just went from one person to the next leaving no space between patients and began caring for another woman for 2 1/2 and am currently a live in since Jan for another lady. This just seems to be my life’s purpose. I’m not married and have no children just a long list of “lil old lady loves” and wouldn’t know what to do if my life didn’t revolve around caring for someone. – Cameo

Just happen this time, my mother-in-law had a stroke, we moved in with her to take care of her, she now is in stage 3-4 dementia. I have been a caregiver 3 other times in my life to family members. – Diane

It just happened slowly. My husband stated to decline and I was there. 20 years later I am still taking care of him and trying to work part time. Not how we pictured our “Golden Years”. – MaryBeth

It just happened, hubby had a stroke July 2015, I didn’t even think about it, it was a given that I would give up my career to care for him, no way was I putting him in a home, hospital. Staff and social worker said I was “MAD” but I married him in sickness and in health, till death do us part! It’s hard at times but love him with all my heart! – Pauline

Becoming a caregiver was a choice

My husband and I made the choice to take care of his mom. She passed this past Dec. We are now helping out with my mom. You just do what you know is the right thing to do! – Linda

I decided to care for my mom. It was a difficult process but it was the greatest gift I gave myself. – Leuqar

Both I chose to marry my husband in a wheelchair, I chose to be a foster mom to possible special needs child and is getting more complex days before his adoption where we commit to be his forever home. – Kirsten

I made the decision to marry my husband, my prince, my best friend. Knowing that I would have to take care of him. Never occurred to me how much work it would be. Some days I’m physically and mentally and spiritually drained. But I made my vow. – Stephanie

I decided! I gave up nursing school to be the voice and the grunt of the people! I am a helper and always will be! – Michelle

I was an only child, who cared for her parents as they aged, while working full time in a high stress career, managing three daughters and helping in their lives, and married to my hubby, who already had parkinson’s. my parents passed, 5 years apart, while my hubby’s health deteriorated. he had a triple bypass and ablation (MAZE) procedure; later, a deep brain stimulator, shoulder surgery, etc. i retired early, 3 1/2 years ago to care for him. he was no longer able to do his own meds (things kept getting missed or screwed up), and getting his own meals (even after i prepped them) was too much for him. since then, he’s been diagnosed with “mild to moderate” dementia, probably from his parkinson’s disease. that explains much of the losses we’ve seen in his abilities. so, it “just happened”, but this part was anticipated. some days i think his disease is killing me faster than it is him, but we just keep marching on. – Marilyn

I was blessed 21 years ago with the very house next door to the one I grew up in. My Dad, Mom,& Grandmother still lived there. My grandmother then needed round the clock care and I stepped in because I knew it was hard on my mom with her own health problems but she helped where she could. I took care of her to the day she died. I took on a job caring for a woman who was a bit difficult for anyone else but she took up to me real quick, she was 103 at the time and was my dearest friend, I adopted her as my grandma and we were 2 peas in a pod, she passed away right before Christmas last year at the age of 105, I miss her. Then my parents and sister needed more and more care as their health deteriorated, my sister passed away last year on 2/18/2016 which was my other sisters birthday and my dad passed away days later on 3/1/2016 which is my mom’s birthday, we were robbed by our neighbors while we were standing in the room with my dad as he passed, then my mother’s health had gotten so bad this last year I am on 24 hour care at her house, as hard as it is to watch her struggle with her copd among other respiratory issues, I know the end isn’t far, I wouldn’t leave her for the world, for in fact besides my husband and 4 kids, she is my world❤ – Genie

I’ve been a hospice nurse for 7 years in SC/NC. I relocated last summer to be near my parents in Connecticut. They are both in their 80’s in great health. With the work I’ve done for years, I understand too well that one event can change everything. I am positioning myself to be available as their needs progress. Although not officially yet, I am choosing to be a caregiver. ❤️ – Kristie

Something happened and I made a choice

Mom was in the beginning stages of dementia for nearly a year when dad got sick and died last year. I am one of 5 kids, but the only one who didn’t own a home – so I was “free” to move in with mom (if by “free” you mean able to break my lease, move further from my kids and fiancee, and arrange a transfer to another job!). But, once the house is sold, mom will be moving in with one of my sisters, so I will be free to resume my life…but close enough to help sis with mom. – Judi

My brother and sisters had spouses and children, I didn’t want them to have to go through worrying as much keeping as much normally as possible, it’s the best thing I could do for my family and I know as much heartache we share they appreciate my decision. – Sophia

It just happened, but I made the choice to take care of my Mom. I could have put her in assisted living years ago but decided to take care of her in our home instead. – Kathy

I was out of work and my neighbor needed help with all types of things. So I would go there and help her. I also helped her with her dog Snowy. Well she had passed away that’s when I decided to become a care giver and I also took her dog so he would still be loved. She wanted me to take care of her baby. Before she pasted I told her that I loved her and I was taking Snowy home. I still miss her so much and so does Snowy we have a new person next store he still cries. – Peggy

I decided to be my mom’s caregiver, but my husband developed pulmonary fibrosis and later had a lung transplant, so no decision there. – Lucy

For me it was something I never thought I would be able to do. But I got a job at a care home and found something that gives me so much fulfillment and purpose. Side benefits are lots of smiles hugs and love. – Lesley

My husband was a incomplete c5-6 quadriplegic when we met. It was something I accepted from the start. About 6 years into our relationship he fell and broke both of his legs losing most of his independence. With this came a lot of health issues. Then in 2015 I decided to be his mothers caregiver too, she had Colon Cancer. Sadly we lost her in Dec 2015. My husband passed away last month. Now I have to learn to care for myself. – Staci

My husband became ill, my wedding vows said in sickness and health till death do us part.. I had been an EMT and an MA so I chose to do it myself, I have no regrets he passed at home March 18, 2016. – Linda

I decided to be a Nurse as a career, and then my Mom was diagnosed with Alzheimer’s, so that both just happened and I made the choice to move from MA to FL to help care for her and my Dad and continue working. – Stacey

I cared for my grandmother, mother and part-time invalid husband (deceased). Later on, when I couldn’t find an office job, it was suggested I become a private caregiver. God made me for this, and I never looked back! Then disability took my career, and now my husband is my caregiver. I am blessed with a caring hubby, but I miss my job. – Sylvia


View all of the responses on our Facebook page.

This advice on ALZ changed my life

This advice on ALZ changed my life

There’s a lot of advice on how to care for someone with Alzheimer’s without, well, losing your mind.

Not a lot of it works.

I was a very earnest child. My poor parents had to deal with me taking things very literally. I still want to correct every mistake and misunderstanding. Luckily, now I have a lot less free time to waste on hopeless battles.

This attitude doesn’t work very well for life in general. It certainly doesn’t fly with someone who has Alzheimer’s.

Then I read an article about a woman whose mom moved in with her and her husband after her Alzheimer’s progressed. Her and her mother butted heads, but her husband and her mom hit it off wildly. This caused its own problems, as it can be tough to watch your husband become your mother’s new golden child.

How did he do it? He loved improv and took every moment with his mother-in-law as a new skit, a new adventure.

Something clicked for me.

I’ve never taken an improv class, although it’s on my list of things I’ve been meaning to do for years, next to learning Spanish. I’ve circled the improv classes in JCC fliers more times than I can count, but I’ve never actually signed up. But, I did have an elementary school teacher who was obsessed with improv and taught our class the basics.

And, thankfully, you can learn just about anything online.

My grandmother, unfortunately, wasn’t as fun as the woman in the story. Most of my time was still spent facing accusations and demands, but at least now instead of feeling insulted, I was working out the next best line. How could I distract her long enough to change the topic? Could I manage to make her laugh? (Usually, no, I could not).

Even if she wasn’t having a good time, my experience was much improved. Instead of trying to convince her that this kitchen that looked just like her kitchen was, in fact, her kitchen, I humored her. I made up elaborate stories about where we were and why it looked so much like her house. There were all sorts of zany reasons why we were waiting there, but don’t you worry, you’ll be heading home shortly. And then we’d get her bundled up and do the equivalent of spinner her around in a circle before a game of hide and seek so we could take her “home.”

I did particularly enjoy her stories about her trip to China as a young girl (not a real thing), the other people she met while she was on her cruise (she was in a nursing home for respite), and her complaints about her boss (her feet were bothering her from standing all day in high heels, although she was bed-ridden and had retired long before I was born).

It made the days a lot more fun and a lot less frustrating.

I never could quite get the rest of the family on board. Everyone else was still trying to convince her she was at home, those were her red shoes, that was FOX News on the TV, they already fed her dinner, and they were her daughter/granddaughter/neighbor. You can’t win them all.

But it worked for me. Maybe it’lll make your day a little easier.

Confessions of a backseat caregiver

Confessions of a backseat caregiver

Like so many children, I’m simultaneously exactly like and nothing like my father.

One of the things that’s very different about us is that he’s very much a caricature of the absent minded professor while I have a life that’s planned weeks in advance in a color-coded calendar.

He’s also oddly impervious to worry, while I’m wearing circles into the rug with anxious pacing.

His girlfriend is a very good match for him, but maybe too good. They are both incredibly kind people whose feathers are impossible to ruffle and they probably can’t find their car keys. Or their car.

This really came out while they were taking care of my grandmother. They are three very smart people, but sometimes it wasn’t easy to tell which one of them had dementia.

My grandmother stubbornly insisted on managing her own medication, bills, and just about everything pretty much until the end. For once, I felt like that was probably a wise choice.

As my grandmother became more frail, I grew convinced that it was actually better that I was a plane ride away from them. The more dementia took her ability to care for herself, the more I worried. We hear plenty of stories about family members whose well-intentioned help was more trouble than it’s worth, and I’m pretty sure I was one of those annoying, meddling family members. My dad was just too nice to tell me to shut up and stop nagging.

caregiver worries

It was all I could do to keep myself from texting them twenty times a day to make sure they had set up that follow up appointment, read this article, don’t forget to pay the taxes, update this paperwork, and close the windows upstairs because it was going to rain tonight.

Yes, I know my father is a successful adult. Who raised me just fine, even if he did sometimes put my sister’s kids to bed with their shoes on and did once feed us tuna straight from the can when mom wasn’t home. I did sort of suspect if my mom hadn’t been in the picture we’d have ended up being very polite, but might have our pants on backwards.

Which would lead to me texting my dad to make sure grandma’s pants weren’t on backwards.

But let’s be honest here: grandma didn’t know if her pants were on backwards. Can you even tell with elastic waistband pants? She’d be in the background insisting the steak they’d dutifully made for her was actually a salad. I was getting myself worked up over things that didn’t matter while they were doing their best to keep her weight up.

I wasn’t just bossing them around, I also wanted to help. The problem was, I couldn’t walk over to grandma’s desk to find the paperwork to make sure the bills had been paid, taxes filed, and deal with that denied claim from the insurance company. They would have to scan the paperwork so I could see it. Which was going to be more annoying then just doing it themselves. Plus, they weren’t worried about any of these things. I was the only one who thought these things were urgent matters.

When I was there in person, I could actually do some things that were actually helpful. Sometimes. Only most of the really helpful things I could do in their suburban town required me borrowing their car to run errands, which they would have to explain to me. I kept an eye on grandma. I straightened up the house. I did a bunch of chores they were completely oblivious to.

It still felt like when I used to “help” my dad as a little girl and would follow him around asking 1,000 questions an hour. In fact, it felt exactly like that. I wasn’t actually helping them at all.

While my grandmother would keep a wary eye on me, she trusted my father completely. The only way to calm her down was to reassure her that he would be back soon and take care of it.

She did not trust me. And for good reason. They were pros at maneuvering her around her victorian house. I was not. They understood her demands when they didn’t make any sense. They were far more patient than I am, which is how they calmly listened every time I gave them advice they did not want or need.

As much as the whole family jokes about my dad and his girlfriend being scatterbrained (and the stories we have to tell…) they are still the people I call when I need advice. My dad is the most reliable person I know, I just know he’ll be a little behind schedule.

Grandma died before I managed to get my backseat caregiving in check, but I suspect this is going to be a lifetime struggle for me.

When caregiving begins

When caregiving begins

Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.

But as Cathy put it so perfectly:

It isn’t a competition regarding when we started caregiving, every version of it is hard.

I asked our community members how old they were when they became a caregiver. Here’s what they had to say.


Childhood

My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara

If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric

I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria

I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole

I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen

I was born into it. – Connie

At birth. – Skyler

12

I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy

13

I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda

14

From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca

I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne

15

My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy

My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta

The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine

16

My grandmother was ill…it was summer…what else needs to be said??? – Gwen

I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia

I was 16 and still in high school. – Tracy

17

I became a caregiver at 17. Now I’m 34. – Rachelle

18

I took care of mental challenged children. They had been abused and their parents on drugs. – Jo

I started taking care of my mother at 18. I became a nurse when I was 27. – Lois

I was 18 when I became a caregiver for my grandfather. – Margie

19

I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia

I was 19 when I started as a health care aid. – Mara

I started at 19 years old. I’m 22 now. – Bri

I started at 19, as a professional caregiver. – Beth

I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz

I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane

I was 19. Now I have been doing it for about 20 years. – Kama

20

My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela

21

I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany

My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle

I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane

I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda

I was 21. I’m 57 now and still caregiving. – Michelle

22

I was 22 when my husband had a TBI. – Mel

I was in my 20s. I’m still going strong in my very late 50s. – Deborah

23

I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie

At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly

24

Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn

At 24 I took care of my mom for a year before she passed away. – Fatin

25

My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz

Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny

I became a caregiver at 25. I’m 41 now. – Shannon

I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey

I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria

26

It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti

I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie

27

I was 27. I have a 19 year old with Spina Bifida. – Jackie

28

At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey

29

When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly

I became a caregiver at 29, when my son was born disabled. – Terri

I was a caregiver at 29 and again at 43. – Jennifer

30

At 30 I became my parent’s caregiver. – Kim

31

I will be starting my 26th year on May 27th. – John

32

I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️  She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi

33

Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle

I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral

At 33 I started working in a hospice house. – Karen

34

I was 34. It was the end of everything. The beginning of everything. – Charles

35

I was 35. It has been 5 years since my husband’s accident. – Stephanie

I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina

37

I was 37. Momma had Alzheimer’s. – Mary

38

I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie

My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie

39

My son had his TBI when he was 12. He’s 25 now. – Tina

40

My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy

41

I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy

42

Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne

I was 42 when my mom had a stroke. – Robin

44

I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine

45

I became a caregiver at 45. I never saw it coming. – Louis

I was 45. My daughter was 12. It takes the two of us to handle it. – Kim

46

I was 46 years old when I started taking care of my 52 year old husband. – Cindy

I was 46 when I started being a caregiver. – Roberta

47

It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie

I became a caregiver at 47. My husband is sick. – Lorraine

48

I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude

49

My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy

I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie

51

My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan

52

I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela

53

I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne

54

I became a caregiver at 54…I will be 64 next week. – Annette

55

I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda

I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula

We took care of my mom after my dad died. We were all over 55. – Julie

56

It became full-time from 56-64. – Christine

57

My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen

My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly


You can read all of the responses on our Facebook page.

Sometimes people don’t know what to say

Sometimes people don’t know what to say

Sometimes people don’t know the right thing to say. In fact, they put their foot in their mouths pretty often. But sometimes they say just the right thing and it makes a world of difference.

I asked our community:

  • Was there a time someone said the wrong thing? What do you wish they’d said instead?
  • What’s the most comforting thing someone’s said to you?

Since this is a collection with experiences from quite a few caregivers, I’ve edited their comments lightly so they fit into the format.

Don’t say

The WORST, absolute WORST, thing to say is “I know how you feel.” – Marj

“Don’t leave her alone!” – My mom has Alz and is nonverbal and no longer able to walk. When I take her out with me, people say things like this. It always feels like an accusation, as if I’m irresponsible or neglectful. If they were really concerned, they’d offer to watch her for me! – Lauren

“Get over it and stop looking for handouts” – A family member that has had no contact with us since he got ill said this to me. Asking for help with medications and food is not looking for handouts. We shouldn’t have to ask. I no longer speak to him, as I have no time for negative mean people in my life. – Maggie

To be honest, there isn’t much a person can say to alleviate the pain and internal turmoil of watching a loved one descend into dementia. What was least helpful to me were people repeating religious platitudes. [We all know what they are.] – Kat

My niece Megan never said “Let me know if you need help.” She just jumped in and helped by bringing over food. It’s very hard to ask for help, especially male caregivers. Megan knew that and became our Angel. – Paul

People are reluctant to believe me when I say tell them there’s no cure. Nothing. No drug. No nothing. People will ask “Is he better?” WHAT?@#$%^! Everyone wants a happy ending…can’t blame them really. – Melissa B

Do say

“Lauren, you have all that responsibility” – I found it comforting for someone to acknowledge the depth of my situation. – Lauren

“I’m making dinner and bringing it to you. What time do you get home?” – This is the most comforting thing I’ve heard in 12 years of caregiving! – Maggie

One friend – a guy, who happens to be a radiologist – upon hearing my husband’s diagnosis offered help with navigating the medical system “anytime, anywhere, just call.” I believed him, so that was about the most comforting thing anyone has said. – Melissa B

The things most helpful were not so much the kind words, or knowing that someone has us in their thoughts and prayers; but the ones that helped me deal with the realities of dementia and take the best care of my parent and myself. – Kat

I often refer people to an article in the Los Angeles Times called “How Not to Say the Wrong Thing.” Comfort in…..dump out.  Simple concept. For person’s with a change in status, i.e., new diagnosis, referral to hospice, the phrase “I wish things were different,” is enough. – Marj

Not that long ago, I ran into someone who knew my mom when she was alive. It was at the grocery store. She said that I am doing a great job and that my dad is a lucky man because not many seniors have family members willing to step up like I have. It’s not an easy thing to do. I don’t get paid for what I do. My dad can be very difficult to get along with. But I promised my mom. More importantly, he is my dad. I am unable to look the other way. – Mimi

I feel like it has always validated my feelings when I hear “I have no idea how you are able to deal with ____.” It makes me uncomfortable, but it is also nice hearing that someone understands the volume and impact the situation could have on you. – Amanda

The best thing, I believe, anyone can say is, “It’s good to see you here” (now, at this time, this moment….) or “I’ve been thinking about you.” That’s nice to know.
Or “Tell me about this condition…” Wow! If more people or ANYONE did that, and really listened, that would be about THE MOST thoughtful thing one could say. – Melissa B

Grieving

For the newly bereaved, I recommend, “I’m so sorry. YOU were the BEST caregiver your (whoever) could have ever wished for.”Marj

When I lost my wife, hearing the words “She’s in a better place now” did not help. Keep it simple with the compassionate words, “I’m so sorry for your loss.”  Followed by, “I’m here for you if you need me.” Then just listen, and let the griever drive the conversation. – Bob Harrison

Words of wisdom

I think what makes the words so tough is that there are no words. Pain as such is an emotional experience and trying to encapsulate those feelings in words seems impossible. But the language of kindness speaks volumes! It’s the gestures and thoughtful acts during difficult times, even when small, that speak truth to a universe that is perhaps good after all. Shining a light, even in the darkest of days… – Ashley Look

Why does mom have bruises?

Why does mom have bruises?

Having a parent or grandparent in a nursing home can be incredibly difficult, especially when so many of us have promised we’d keep them at home forever. So often residential care hardly feels like it reduces the amount of time we spend caregiving, with all the driving back and forth, paperwork, laundry, and endless errands.

And then there’s the day we visit mom and she has bruises on her. One of the hardest parts of dementia is that she can’t tell me what happened.

Before you panic and yank her out of the nursing home, read this:

Take it with a grain of salt

Her explanation, that is. People with dementia often mix up the details. Did the aide hit her or did she hit the aide? Remember that you can’t take her story at face value. I’m not saying to ignore her story, but look for some evidence before you make any accusations. Asking her what happened is just one step in figuring out what to do.

Was there a procedure involved?

Routine blood draws, physical therapy, and other minor medical procedures can leave bruising. Check with the nursing staff to find out what medical professionals she’s seen recently and what they’ve done that might cause bruising.

Check her medications

Some medications increase susceptibility for bruising, like blood thinners and heart disease medications. Even pain killers, antidepressants, and asthma medications can cause people to bruise easily. Some supplements, like fish oil and ginkgo, act as blood thinners and can lead to bruising.

Other medications can cause dizziness, leading to bumps and falls.

Check in with the pharmacist to see if this might be the explanation and if there’s any cause for concern.

Liver problems and other conditions can also lead to bruising easily. If nursing home staff aren’t sure where the bruising is coming from, make sure she’s checked over for health problems that might be causing it.

Bruising can also be a sign of vision or balance problems. Talk to her doctor and get her vision checked. Make sure there are grab bars installed in the nursing home and that she’s using a walker or cane if she needs to.

It might be benign

Older people tend to have delicate skin and bruise easily. This is especially true for women. The loss of fat under the skin increases someone’s risk for bruising, as does past sun damage and a host of other factors.

If you’ve ever hoisted an elderly person out of bed when they weren’t being cooperative, you can understand that it’s possible to bruise someone accidentally in the normal course of affairs, even when you’re being careful. It often doesn’t take much force to cause bruising in someone with delicate skin and frail blood vessels.

Talk to the nursing home staff to see if there have been any problems. Has she been resisting being helped with mobility? Has she been bumping into things? Has she been getting the supervision and support she requires?

It may be time to get her physical therapy to help her move around more safely or an investigation into what might be causing her to be uncooperative when getting in and out of bed.

Not only is it easier for elderly people to bruise, they take much longer to heal. A bruise that might heal in two weeks on a young person may still be there months later for someone who’s elderly. This can lead to occasional bruises adding up — and making it seem like a major cause for concern.

It might not be benign

Some dementia patients are placed in nursing care because they’re aggressive toward caregivers — they may be violent toward other patients, too.

Watch how the staff treat other patients to see if a certain staff member is handling them roughly. Make sure they’re lifting patients correctly. Improper lifting is dangerous to both the caregiver and the recipient!

Unfortunately, figuring out if this is a case of elder abuse or not can become tricky with dementia. The signs of abuse we look for — bruises, social withdrawal, confusion, depression, hygiene issues, and weight loss — are all relatively common among elderly dementia patients.

If the staff seem poorly trained or are constantly turning over, that’s a sign that things aren’t well run behind the scenes.

If you suspect abuse, the National Center on Elder Abuse can guide you through what to do.

Finding a safe nursing home

Even in the best nursing homes, where patients are safe and supervised, patients will get bruises occasionally. There will even be occasional bumps and falls.

We can’t protect our parents from everything — and I’ve certainly gotten my share of bruises from bumps I don’t remember. It happens.

But if you’re seeing a pattern of bruising or are noticing other causes for concern, look into it. The more time you spend in the nursing home with her, the better off you’ll both be.

 

If nothing seems amiss, bruising easily may be part of the new normal. Make sure staff are extra gentle with her. Icing and elevating bruises right away can help reduce marks. Long sleeves and long pants may help give the skin a little extra protection.

Thankfully, as long as bruising isn’t a sign of abuse or an underlying condition, it won’t cause long-term damage.

Caregiver frustration

Caregiver frustration

No matter how rewarding caregiving can be or how much we love the person we’re caring for, caregiving is frustrating.

Frustration just comes with the package. We’re human and caregiving inevitably involves situations and tasks that are inherently frustrating. So many of us feel guilty for losing our cool, but it happens to even the most patient caregiver, eventually.

Frustration is a daily challenge. My dad’s other 3 children make no attempt to even call him to say hello. So there’s no real break or support when my dad needs to visit the emergency room.

Because I am also my 22 year old autistic son, frustration can magnify greatly. My son struggles when he must wait for something he wants to do. Like visit a very big mall about 50 minutes from home. He also struggles a bit with sharing me with his grandpa.

Frustration, too, to eke out some time for just myself.

Frustration is and, probably be a big part of my life for the next while. – Mimi

Frustration comes up a lot when we talk about the struggles of caregiving. Dorothy, BobGiselle, HarrietJudith, and Roz all talk about the frustration that results from difficult people and challenging situations, day in and day out.

What’s your biggest caregiving frustration?

Constant interruptions

My husband had a stroke four and a half years ago. He uses a wheelchair and needs assistance with any transfers. Also, his judgement is not always the best when needing to pick something up from the floor. My biggest frustration is not being able to complete a task such as folding laundry or doing dishes without having to stop and help my husband. I love him so much and understand his frustration when needing to ask for help. If I don’t respond right away, he will try to do things that are not safe. – Debbie

I’m maintaining a writing career while caring for my disabled husband. Often when I’m writing, I have to stop what I’m working on and help him. This interrupts my thoughts, my word flow, and my productivity. Still, I’m determined to keep on writing, and created a series for family caregivers. – Harriet

Isolation

In the end, it’s the frustrating/bitter/sad realization that this is a path you walk alone, mostly behind closed doors. No one has the history you do. Honestly, I do not expect people to understand, even the relatives. Friends and family do the best they can, really, most of the time; but everyone, EVERYONE, has life’s curve balls to deal with. – Melissa

Not having any help and everyone second guessing everything you do. – Dennis

Lack of sleep

My biggest frustration is losing so much sleep. I never know when he will get up early in the morning and trigger the alarm. After I wake up from sleep I can’t get back to sleep knowing he is walking around needing me. – Gina

Navigating the system

The process to obtain Disability Benefits for my wife diagnosed with PSP was the most frustrating ordeal I have ever dealt with!! Every time I think about it now steam still comes out of my ears. – Paul

It’s okay to get frustrated

I don’t care what other people think. My closest friends know I love my husband. But I’m human. Actually, I’ve circled the wagons, and keep in touch with only the ones who get it. The rest? I’m polite, but I don’t really hear what they say. – Melissa

Frustration is a normal, even healthy, part of being a caregiver. How do we cope with it?

If you can, take a break. You probably can’t take the day off or even get an hour’s peace. You can hopefully step into another space for a minute to take a deep breath and clear your head.

Focus on problem solving. Is there something you can do to make a situation easier to deal with? Sometimes there isn’t. In that case, we need to learn to accept things the way they are.

Think about the big picture. If you’re frustrated with a person, be it a customer service rep or the person you’re caring for, imagine things from their perspective.

Remember it’s okay to be upset. Being frustrated doesn’t make you a bad caregiver or a bad person. It just makes you human.

Part of it requires cultivating your overall resilience. The more resilient we are, the easier we can rebalance after something throws us off.

You might also find Iris’ tips for dealing with anger or Michelle’s experience learning to forgive herself helpful.

Remember, caregiving isn’t for wimps. Take a minute to recognize how strong you are to have made it this far!

Can I get paid to be a family caregiver?

Can I get paid to be a family caregiver?

It’s a question I’m asked all the time by family caregivers:

Can I get paid to be a family caregiver?

It’s usually accompanied by qualifiers:

  • I’m not trying to be greedy, but I had to quit my job to take care of my mom.
  • My husband isn’t comfortable having a stranger take care of him.
  • My insurance will pay for someone to take care of my disabled sister and I’m a trained medical assistant – can’t they just pay me?

Family caregivers often spend a large portion of their income – not to mention their savings – to care for their loved ones. You might even be taking unpaid leave or feel forced to quit your job to fulfill your family obligations. Family caregivers who quit their jobs lose out not only on a paycheck, but on retirement plans, pension plans, and social security benefits. Family caregivers are saving insurance companies and government agencies billions of dollars by providing care – shouldn’t there be a way to get paid something?

Unfortunately, there are only a few programs that will pay family caregivers. We know how hard you work and how much you deserve financial support, but most of the time it is not possible to be paid to be a family caregiver. Because health care differs so much, I can’t provide specific information. However, I can point you in the right direction to find some answers.

Government programs to pay caregivers

Administration on Aging & Department of Aging Services

Each state and county provides different services for the Administration on Aging. Some programs will provide stipends, reimburse caregivers for supplies, offer training, and provide respite. Paying for Senior Care maintains a list of Area Agencies on Aging and Disability Resource Centers that’s searchable by state and county.

Guardians of children

Guardians of disabled children who are not their biological or adopted children can become subsidized guardians. This allows relatives to receive financial help to care for children and keep them out of foster care.

Structured Family Caregiving

In some states, family caregivers of Medicaid recipients can be paid through the Structured Family Caregiving program. In order to participate, you must be referred by your local Agency on Aging, which is typically run at the county level. The program is run by Caregiver Homes. Caregiver Homes is available in Connecticut, Massachusetts, Rhode Island, Ohio, and Indiana, and will be in other states soon.

  • The person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
  • Caregivers and patients must live together.
  • Stipends typically range between $900 and $1,200 a month, depending on the level of care.
  • You will be assigned a registered nurse and a care manager who will meet with the caregiver and patient to develop a care plan and will provide ongoing coaching, training, and other support.

Medicaid

Medicaid varies by state, so contact your local Medicaid office to find out if you may qualify. If your Medicaid office isn’t responsive, the National Resource Center for Participant-Directed Services can help connect you to the state programs that allow the patient to decide how to spend their health care money – sometimes including the option to pay a family member for care.

Medicare

Unfortunately, Medicare does not pay for in-home care or adult day services.

people are forced to choose between their jobs and their families

Paid Caregiver Program Locator

Hundreds of programs pay family members to be caregivers for their aging loved ones. Paying For Senior Care provides a useful tool that will allow you to find the programs that will pay you as a family caregiver.

Find Help

Caregiving resources for veterans

The VA provides a range of services for Veterans. The VA’s Caregiver Support Line will be able to tell you what services you and your family may be eligible for, so be sure to give them a call at 1-855-260-3274.

Portrait of US Marine Corps soldier with father saluting over brown background

Aid & attendant pensions

Veterans and their surviving spouses may be eligible for additional payments if they require home health aids or other assistance for being housebound because of a disability.

Post 9/11 veterans

The caregivers of disabled post-9/11 veterans may be eligible to receive a monthly stipend, health insurance coverage, caregiver training, counseling, and respite care for one primary family caregiver and up to two secondary family caregivers.

Veteran-Directed Home and Community Based Services

Veterans who qualify for nursing home placement may also qualify for the Veteran-Directed Home and Community Based Services program. Veterans in this program may hire their own personal care aids, including family members.

Private sources of support for family caregivers

Disease or condition specific organizations

Some private organizations will provide stipends or grants to support caregivers. Organizations who offer this each have their own requirements, so contact a social worker to find out more.

Family arrangements

Sometimes parents will recognize the financial hardship their care causes family members and will pay their family members to care for them. This may take the form of an adjustment in the amount of inheritance or some other creative reimbursement. Sometimes relatives will pool their money to pay the primary family caregiver. It’s wise to write a caregiver contract and check with an elder care benefits planner or elder law attorney if you decide to go this route, as it can have implications on Medicaid eligibility, taxes, and inheritance.

There’s also the possibility that family members could share the cost of caregiving, so it’s not all falling on one person.

It’s important to make sure family members are in agreement. Finances can bring out the worst in families, especially during stressful times. You may consider family mediation services – the National Academy of Elder Law Attorneys can help you if you’re caring for an aging relative.

Long-term care insurance

Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. These types of policies are relatively unusual and most exclude people who live in the same household from being paid. These types of plans tend to be significantly more expensive. Talk to your insurance agent to learn more.

Down syndrome stock photos: love

What if none of these programs will help you?

Even if you can’t get paid to serve as a family caregiver, you may be eligible for programs that will cover adult day services, in-home support, or other ways to ease the financial burden.

caregivers are forced to quit their jobs...how can they pay the bills?

Department of Welfare

Caregivers may qualify for other programs, including cash assistance, food subsidies, and medical assistance. Check with your state welfare office for more information.

Resources for those over 55

The National Council on Aging can help you find out if your loved one is eligible for financial assistance for medication, housing costs, and health care. Get started with their Benefits Checkup.

Social service organizations

There are numerous organizations that provide grants or emergency assistance to families. Many of these are specific to location, employment history, and condition. Organizations will provide grants for rent, mortgages, and utilities. Other organizations provide support for food, medication, supplies, and grants for home modifications to meet the needs of people with disabilities. Each agency has its own eligibility requirements, so you will need to search online by specific needs, contact a local social worker, or discuss it with hospital staff.

Tax deductions for caregivers

If you’re caring for a relative and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. Visit the IRS website or call the IRS help-line at 800-829-1040. You can also talk to an accountant about these options.

Working while serving as a caregiver

Some companies are more caregiver-friendly than others. Your company may allow you to work part-time, have flexible hours, work from home, or provide additional time off. Or they may not.

Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Some companies even have employee assistance programs. Check your employee handbook to see if your company has set policies. Go over the options with your supervisor and HR before you make any big decisions.

Do these programs really work?

Skeptical that these programs will really be worth the effort? We’ve talked to hundreds of caregivers using these programs about how much help they’re getting and how they make ends meet. Find out what they have to say.

Hear what caregivers have to say

Getting help is possible

It isn’t easy and it isn’t enough, but help is out there. Find out where other caregivers have found help and how it turned out.

Do you use one of these programs? Have you tried to enroll? Is there another program we should know about? Please let us know in the comments.

parents of disabled children are forced to choose between a career and quality care

This article was originally published in September 2014. It’s been updated several times in order to reflect changes to available caregiver support programs.

Getting help: Is it really possible?

Getting help: Is it really possible?

So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.

We know that’s not quite how it works.

Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.

Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.

Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.

It’s worth it to keep asking and keep searching.


I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.

That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.

In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.

But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.

Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.

Nancy Lamb


I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.

We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.

Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.

I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.

The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.

My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.

He is mostly a happy young man with a great smile and a laugh that brightens up the room.

Barb Ward


When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.

So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.

Melissa Batavia


My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.

After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but  didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.

The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.

I asked for help and didn’t get any more times than I can get into.

People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.

Catherine Ford-Barbiero


My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.

Joy Meason Intriago


I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.

Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.

Mimi Leow


Some responses have been edited for grammar and clarity.

About to burn out? Try this.

About to burn out? Try this.

When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.

Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.

You’re burning out

The problem is, even super heroes aren’t super heroes around the clock, day in and day out.

Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.

You know what they need. Do you know what you need?

Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.

Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.

Think about what you really need. What specific things are getting to you the most?

Of the things that are getting you down, which ones could possibly be changed? Even a little?

about to burn out? try thisFight decision fatigue

Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.

Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.

  • Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
  • Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
  • Schedule appointments at the same times as much as possible.
  • Schedule times to make phone calls, do paperwork, and other chores.

The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.

Get back control

Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?

What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?

Is someone demanding help constantly when they could really wait an hour? Set up ground rules for requests.

Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.

Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.

Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.

Get in touch with you

You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.

Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.

As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.

You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.

You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.

Stay connected

When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.

It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.

Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.

Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.

It’s true — your friends might not understand what you’re going through. Those long hours in waiting rooms and hospital cafeterias are an opportunity to meet new people who get it.

But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.

burnt out? here's the cure for caregiver burnoutKnow your strengths

None of us are good at everything.

Some of us are just not good at keeping track of bills and insurance paperwork.

Some of us have limits to our patience with other peoples emotional needs and poor behavior.

Some of us aren’t very good drivers.

You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.

Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.

This is one of those times when Facebook can really help. Ask for something specific and you’ll have better luck.

If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.

People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.

Know what you need

It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.

When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.

Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.

The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.

Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.

One question that changes everything

One question that changes everything

The other day I was in an ER far from home. The woman in charge of triage was refusing to move forward with triage because we didn’t have insurance they’d accept.

The fact that we had insurance and had even gotten pre-approval to go to the ER wasn’t enough — she wanted us to call them back and get paperwork faxed to her. The instructions we’d gotten to pay out of pocket and submit the invoice for reimbursement meant nothing to her. She wanted a fax. But she couldn’t find the fax number.

Finally, I asked, “Is there another ER we could go to that will accept payment in cash?”

Suddenly, we could pay in cash. There was a clear procedure in place and it was no problem.

The next day, I saw the same advice in a comment here:

If I got, “Sorry, I can’t help you.” I asked who could. – Diane Bobinski

When you’re talking in circles — or worse yet, being told ‘no’ over and over again — ask who can help.

It seems obvious, but it’s so easy to forget to do in the moment.

Plenty of times the person saying “that’s not my job” knows whose job it is to help you. But so often they don’t offer up any information you don’t ask for.

Too many notifications?

Too many notifications?

Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.

Don’t worry, there’s an easy solution.

Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.

how to unfollow a facebook group

By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.

In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”

add a facebook shortcut for a group

Now a shortcut for the group appears on the left side of your Facebook account.

facebook group in shortcuts menu

When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!

When family caregivers could take a year off – with pay

When family caregivers could take a year off – with pay

A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?

Her comment really piqued my interest — what programs are available to family caregivers in Belgium?

Belgium’s time credit system

In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.

Who pays?

The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.

Encouraging work/life balance

Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.

The history of time credits

The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.

In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.

The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.

In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.

Luckily, Belgium provides other support for the 12% of the population providing family caregiving. Of the elderly in Belgium, 82% have an informal caregiver.

Paid family caregiving

Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.

Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.

Caregiver support

In addition to sabbaticals, family caregivers have access to:

  • Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
  • Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
  • Emergency leave (10-45 days/year)

Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.

Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.

Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.

Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.

Social Entitlement credits

Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.

Thankfully, even self-employed persons in Belgium are entitled to caregiver support and sabbaticals.

 

Belgians are legally obligated to provide for their elders and the average nursing home cost exceeds the average pension payment.

Family caregivers in Belgium suffer from fragmented information sources and a lack of continuity in care. One survey of family caregivers in Belgium of people with mental health issues found that 1 in 4 were dissatisfied with the support they received from their workspace.

Would you like to see these programs extended to the US or Canada? Do you think they would work in another country? Have you provided care for a loved one in another country?

Looking back at 95 years of eldercare

Looking back at 95 years of eldercare

Things have changed a lot in the US during my grandmother’s lifetime.

My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.

I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.

Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.

It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.

When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.

Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.

When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.

More and more people rely on Medicare while fewer people pay into the system.

With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.

They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.

As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.

My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.

Our lives have changed. It’s time our system for eldercare changes, too.

No one here cares how you voted

No one here cares how you voted

We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.

Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.

In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.

We can’t support each other if we’re busy tearing each other down.

The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.

Millions of caregivers means millions of opinions

We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.

There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.

That’s a lot of different people, in different situations, with different hopes and dreams and ideals.

No matter how different we all are, there’s one thing that binds us together: caregiving.

Because there are some things only another caregiver can understand.

Are politics on your mind?

The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.

If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.

If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.

The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.

It doesn’t matter how you voted, or if you voted. At The Caregiver Space we believe all caregivers deserve support.

Talking about eldercare

Talking about eldercare

Are you thinking it’s time to schedule a family meeting to talk about your aging parents?

Don’t do it.

via GIPHY

I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.

Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.

Start the conversation

You don’t need a special occasion to talk about aging.

The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.

First, write down all the questions you have for your parents. Maybe you want to ask them:

  • What will you do if you need help every day?
  • How much can your family help you?
  • What would you do if you couldn’t stay in your own home?
  • How can you adapt your home to make it safer?
  • How can we pay for medical care?
  • How can we pay for home health care?
  • How can we pay for nursing care?
  • What’s most important to you if you become very ill?
  • Who do you want to make decisions for you if necessary?

Then, answer all of these questions for yourself. What would you want if you were ill or injured?

Look over your insurance policies, your medical coverage, your savings, and  your bills. Fill out a living will. Think about what your family would do without you.

Then think about how you should approach these topics with your parents.

via GIPHY

Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.

Know what matters

The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.

via GIPHY

The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.

These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.

These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.

Plan from the beginning

We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.

When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.

via GIPHY

Don’t make it awkward

Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.

via GIPHY

There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.

Then you’re talking about this amazing book you just read, not planning their demise.

If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.

What does it mean to be resilient?

What does it mean to be resilient?

Resilience isn’t being impervious to hard times, it’s the ability to recover from difficulties.

When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.

how to become resilientAssess the situation

Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?

Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.

Reframe the situation

People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.

Peoples actions aren’t always a reflection of how they really care about you or value your help.

Set boundaries

We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.

Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.

Accept your own abilities

No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.

When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.

Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.

Find support

There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.

You deserve support, encouragement, and understanding.

Remember why you’re here

Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?

Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.

Working while caregiving: how we do it

Working while caregiving: how we do it

Many of our community members have had to quit their jobs or retire early in order to serve as a family caregiver. Many more struggle to juggle caregiving and their career.

Working family caregivers often manage to stay at work by arranging for a flexible schedule, cutting back their hours, switching to a different type of job, or arranging to work from home. Other caregivers find themselves becoming entrepreneurs developing tools and products for other caregivers.

Lauber Rick - On Bench with BookRick Lauber

When Rick’s parents couldn’t live independently any longer and needed his support, at first he was able to continue working full time. Eventually, he realized this wasn’t going to work long-term, especially as their health declined there were more jobs – outside of his own job – to do and there weren’t enough hours in the day to both work and fulfill his responsibilities to his parents. He felt torn between two important priorities — and he’d need an income in order to support himself and care for his parents.

Being hesitant to share such personal information with his supervisor at work, Rick was nervous to ask about cutting back his hours. There was some inner turmoil, but something had to be done. Luckily, his employer was supportive and agreed to let him work three days a week, so he could devote time to support his parents. Now a number of years after the fact, Rick realizes that, considering the options, an employer is often wiser to work with a current employee needed caregiving time off rather than try to replace that valued employee and go through the time and expense of advertising, screening resumes, interviewing candidates, and training.

A part-time schedule provided Rick increased scheduling flexibility, allowed him to set up his parents’ medical appointments for his days off, and reduced the number of phone calls he was forced to take and/or make at the office on his parent’s behalf. Cutting back his hours made it easier to make work his full priority when he was in the office. Having a little bit less on his plate really reduced the stress he was under, heightened his concentration level, and allowed him to feel more productive and focused. Being able to continue making an income, even if it was reduced, gave him a real peace of mind.

In a way, his time at work became a type of respite. His life may have been all about caregiving at home, but he didn’t talk to his coworkers much about caregiving, allowing him to maintain another side to his identity. As another means of personal escape, Rick also took writing classes during this time. Caregiving can be all consuming, but work and school kept him firmly rooted in the career world and creative fields.

Rick’s dad was able to go to a day program for people with Alzheimer’s. This gave his mom some time for herself. Rick was caring for both of his parents, but his mom was also a caregiver to her husband, despite her illness. It was important to make sure she could relax, sleep, and take care of herself so she wasn’t exhausted by caregiving.

In addition to the day program, Rick used driving services to make sure his parents got safely to appointments when they could manage on their own. Arranging transportation was still time consuming, but it helped him stay at work.

He worked part-time for nearly two years. One huge benefit to working part-time was being able to keep his foot in the door at work. His career wasn’t derailed by a long absence. Continuing on a part-time schedule made it much easier for him to transition back to full-time.

Rick Lauber is the author of The Successful Caregiver’s Guide and the Caregiver’s Guide for Canadians.

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Adrienne and Richard at the 1st Annual National Caregiving Conference in Chicago

Richard Lui

MSNBC news anchor Richard Lui helps take care of his father. The hiccup is that Richard lives in New York and his parents are in San Fancisco!

He’s been splitting his time between the two coasts since his father was diagnosed with Alzheimer’s five years ago. When his dad couldn’t remember his sibling’s names, they knew something was wrong.

Richard sat down with his boss and explained the situation early on. His boss is also a long-distance caregiver, so she understands how important it is for people to be devoted to both our careers and our families. He now serves as a news anchor on the weekends, making diving his time do-able, although certainly not easy.

Even as a long-distance caregiver, Richard feels it’s incredibly important to stay overnight at his parents’ home. He needs to hear the bumps in the night in order to really understand what’s going on — and experience both the difficult and heartwarming moments of caregiving.

His mom doesn’t consider herself a caregiver, although she’s the one who takes care of her husband day in and day out. She’d never ask for help, but Richard is honored to be there for his parents.

Richard’s father was a pastor, his mother a teacher. His father has always been a very loving, happy man. He isn’t always sure who Richard is, but he knows that he loves him. As Alzheimer’s changes his father, Richard feels the core of his father’s identity is being revealed. He views it as a type of rebirth.

While Richard’s strong faith is guiding his family through this journey, he knows the times ahead will be both challenging and beautiful.


So many of our community members are in this situation. Here’s what a few of them have to say…

I was working full-time when he was diagnosed and he ws retired. I was able to continue working for 1 1/2 years, but it became increasingly harder. My employer made me an incredibly generous offer of part-time work from home and I was able to do that until I retired in June 2015. I still wasn’t 65, but made it work. Those 3 years were wonderful because I was still able to get out to work some of the time and keep up my professional relationships and work friendships. – Deb

I have [professional] caregivers during the day, so I can work. – Cathy

I recently returned to work outside of home after being a stay-at-home/work-at-home mom for 10 years. As the caregiver to my partner, the main breadwinner for our family and the one who handles most household and family-related tasks, I often find myself feeling overwhelmed, frustrated, resentful, and hopeless. – Melissa

I feel part wife / part maid/ part cook / and I work part time. – Susan

I work full time at an office. She is on longterm disability and is alone all day. I don’t make much plans without her because time together is precious. – Lesley

I am not only my mother’s primary live-in caregiver, but we also have a paid caregiver from an agency for about 4 hours a day, 3 days a week. My mother has a fixed income and I have only been able to work part-time since she can’t be left alone for very long. – Laurel

I have to do everything plus work full time. – John

I take care of my husband, whose made great strides in the past year, so he needs me less and less. However, it’s still a lot to handle and I’ve had to take a lot of time off of work to take care of him, which has been a financial burden and not great for my career. – Allison

I cared for my parents from 2012 until July 2015. For those years i was going at 90 miles an hour,working taking care of parents and also trying to have a life with my husband. Then after July 2015, everything stopped. I no longer had my full-time job, mother is in the nursing home and dad is gone. All the friends are still working or have not kept in contact. I tried to go back to work and was told I would have to start at minimum wage and without health insurance! I was there for 12 years. – Lorrie

When my husband got hurt I worked a full time job and also tried to take care of him and believe it or not; I did take care of him and I did a very good job of it. My husband was on tube feeding and could not talk or walk, but when he left the hospital he could talk and 6 months after his accident he could also eat. Yes, we are battling new problems now, but he and I make it together. – Sylvia

I work full-time and through the Advantage Care program, my husband has a bath aide that comes to assist him Monday-Friday. come home from work expecting a,b,& c to be completed and most times only a is done. It is very frustrating for me but my husband and I can never come to agreement about it. – Tina

I have always had to work to support us so I have had specialized day cares, day programs or sometimes in-home staff to manage care her while I work. After work, the real work begins. The doors close on me and I become Super-Mom, Legal Guardian, Psychiatric Nurse, chief researcher, housekeeper, cook, personal care attendant, program manager, organizer. There is no day off, no outings, no friends stopping by. I don’t ever get sick leave and use vacation time to keep my income at a manageable level when I spend too much time at her doctor’s appointments and hunting resources. It’s an absolute grind. I work strange hours, take work home, work Saturdays. Whatever it takes not to get fired. – Cynthia

I care for my husband who has had two TBI’s. He is totally dependent on me for everything. I am lucky enough to work a full time job from home while taking care of him. I rarely can leave my home as it is difficult taking my husband places for many reasons and I cannot leave him alone because of his cognitive deficits. – Barbara

I work full time, care for my sister three nights per week, and manage all of the aspects of her life the rest of the time. – Wendy

I do my best trying to hold this whole thing together, but it seems to be spinning out of control with no end in sight. I do have two employees that stay with my wife so I can work, my mother helps out as well. My wife suffered severe brain injury. Sometimes I relate my situation to the movie ground hog day. Each day we start over: I answer the same questions again, I go over the normal routine things that have to done every day. I think my wife no longer comprehends time. My daughter has started college and is no longer here regularly. I always was the working man that could handle all the load put on me. There is no break from this load and I am getting tired. – Keith

I cannot work the hours I once did because I have to care for my wife. She has a type of cancer that comes back, often fatally. I read the internet and see that she probably has not a lot of time. Of course, her doctor is silent. If I am to be her caregiver (there is no one else) I think I must give up my business. So I have to decide when. If I put my practice up for sale soon, my wife will be very upset. – Peter

Some comments have been lightly edited for clarity


Here are some tips for finding a job that allows you to work remotely and how to actually get work done at home while caregiving.

If you need to leave your job to provide full-time care, check out these programs that pay family caregivers to see if you qualify. Our community can vouch that these programs are real, although they fall short of what we need and far too many people don’t meet the requirements.

Tax breaks for caregivers

Tax breaks for caregivers

I don’t need to tell you how expensive caregiving is.

I won’t claim that tax breaks for caregivers are enough to really lessen the financial squeeze. Every little bit helps, though.

A tax deduction lowers the amount of taxable income you have. If you make $30k a year and have $5k in deductions, you only owe taxes on $25k.

A tax credit reduces the amount of taxes you owe. If you owe $5k in taxes and have a tax credit for $1,200, you will only have to pay $3,800 in taxes.

If you’re self employed, there are other considerations, too.

Who’s a dependent?

Generally to be your dependent, you must provide at least half of their financial support and they need to be either related to you or have lived with you for a full year.

If several family members provide half or more of the support, you must choose which family member will claim them as a dependent. You’ll need to file a mutual support declaration, form 2120. A person can only be claimed as a dependent by a single tax payer.

Not sure if the person you care for is a dependent in the eyes of the IRS? Find out here.

Payments your caree makes to you

If you take care of a family member and they give you money to help with household expenses, you don’t need to pay taxes on this. This is not considered income by the IRS. It does, however, count as support in determining if your family member is a dependent for tax purposes.

If you cash a family member’s social security benefits and use them to pay for their care, you don’t pay income tax on them. It’s still considered their income.

tax help for family caregiversMedical and dental deductions

If you itemize your tax deductions on Schedule A, you can deduct medical expenses for you, your spouse, and your dependents.

In order for medical expenses to be tax deductible, they have to total more than 10% of your adjusted gross income (AGI). If you or your spouse is 65+, they have to total more than 7.5% of your AGI.

How much can you deduct

You can only deduct expenses over the allowable amount. If you’re 32, your AGI is $35,000, and you have $7,510 in medical expenses, here’s how the math would look:

35,000 x .10 = D   7,510 – D = medical expense deduction

35,000 x .10 = 3,500   7,510 – 3,500 = 4,010

You would be able to deduct $4,010 of medical expenses on your taxes.

What can you deduct?

  • Payments and co-payments to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
  • Payments for in-hospital or residential care, including the cost of meals and lodging
  • Rehabilitation, therapeutic, preventative, and personal care services for people who are chronically ill who need support for ADLs
  • The cost of eyeglasses, contact lenses, hearing aids, false teeth, crutches, wheelchairs, and guide dogs
  • The cost of prescription drugs and insulin
  • Medically necessary home improvements
  • Special medical equipment you have installed in your home (must be adjusted based on any increase in your home value)
  • Handicap accessible vans or vehicle adaptations
  • Payments for transportation to and from medical care appointments (including taxi fare, standard mileage, tolls, and parking)
  • Payments made for insurance premiums for policies covering medical and long-term care.
  • Medically required food
  • The cost of attending medical conferences related to a chronic disease you, your spouse, or dependents have (but not meals and lodging, only admission and transportation)
  • Treatment for alcohol and drug addiction and smoking cessation
  • The cost of medical weight loss programs if it’s to treat a specific condition diagnosed by your doctor

What can’t you deduct?

  • Anything your employer or insurance reimbursed you for
  • Funeral expenses
  • Over-the-counter medicines
  • Health club fees
  • Vitamins
  • Diet food
  • Toiletries and cosmetics
  • Costs of medical tourism (but the procedure itself is allowed)
  • Most cosmetic surgery
  • Non-prescription nicotine gum or patches

You can only deduct medical expenses in the tax year they were paid. You can get more specific information from the IRS.

Child and dependent care tax credit

The federal government and more than half of the states provide tax credits for the expense of home care or adult day care. This credit is up to 35% of qualifying expenses, based on your AGI, and is filed on form 2441. You must name the care provider on form W10.

Any money paid to your spouse, the parent of the qualifying person, any of your dependents, or anyone under the age of 19 is not eligible.

You cannot claim this tax credit if you’re married filing separately.

If you pay an individual, you may be required to pay social security, Medicare taxes, and unemployment taxes if you are considered a household employer. You cannot claim expenses for anyone you paid ‘under the table.’

Most states allow you to deduct a percentage of your federal tax credit from your state taxes. Check to see if your state provides a tax credit for dependent care.

If they’re not a dependent

Even if someone isn’t considered your dependent, they can still claim their own medical expenses on their tax return.

Elderly and disabled tax credit

This credit is for people who are elderly or disabled and file their own taxes (not as your dependent). If someone 65+ or who is disabled (and any age) has an AGI lower than the required threshold, they can get the elderly and disabled tax credit. This goes on Schedule R.

When caregiving means selling your home

When caregiving means selling your home

Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.

Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!

If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.

We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!

The capital gains tax exclusion

Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.

Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.

If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.

You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.

This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.

What if you don’t meet the requirements?

There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.

The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.

You qualify for a reduced capital gains tax exemption if:

  • You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
  • If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
  • Your home is not suitable for a family member because of their disability.
  • A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
  • If you moved to be closer to a treatment facility for yourself or a family member.
  • If the climate of the area you lived was not suitable for a family member’s health.
  • Anyone in your household has passed away.
  • Anyone in your household has lost their source of income.
  • You and your spouse get divorced.
  • You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
  • A family member requires a service animal and your condo prohibits animals.

A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.

If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:

  • They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
  • They have become disabled and their home is not accessible.
  • Their neighbors object to their mental or physical health issues.
  • They can no longer afford their home because they’ve lost their income or their income has been reduced.
  • Someone in their household has passed away.
  • They’ve gotten divorced and can no longer afford their home.
  • They require a service animal and their condo prohibits animals.

You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.

If the home owner requires residential care

If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.

If your spouse has died

If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.

If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.

What’s the reduced exemption?

The reduced capital gains tax exemption on your primary residence is determined by a formula.

Maximum capital gains tax exclusion multiplied by the number of days divided by 730

The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).

The number of days is:

  • the number of days you owned the home and it was your primary residence
  • the number of days you used the home as your primary residence
  • the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale

You use whichever of the three options is the fewest days.

730 is the number of days in two years.

Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:

500,000 x 547.5 / 730

273,750,000 / 730

375,000

In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.

Let’s come together as caregivers

Let’s come together as caregivers

As America becomes more and more fractured, caregiving is one thing that can bring us together. The burden of caregiving is inescapable.

Rural, urban, suburban, caregiving cuts across geographic divides. No political affiliation is immune to illness, disability, or aging.

No amount of money can insulate you from the stress of caregiving. Even the wealthiest worry about the cost of medical care and support.

We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.

Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.

We’re not taking sides because there is no “other side.”

There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.

The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.

No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.

Let’s come together and ask that every political platform include support for caregivers.

10 steps to being the executor of an estate

10 steps to being the executor of an estate

As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:

Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.

The legal will should NOT be kept in a safe deposit box.

When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.

Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.

Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.

Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.

Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.

Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.

Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.

Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.

It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.

Karin Carl

What’s left behind

What’s left behind

The caregiving for my Uncle fell upon my mother. He did not want the family to provide hands-on care, so he made sure to have a live-in home health aide. The logistical and legal aspects of care and his estate were still significant.

After his passing, I went with my mother to help clear out the home he’d lived in for over 25 years.

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His home was always meticulous, so it was odd to see things that didn’t belong.

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The TV captures his personality so well.

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Even retirement communities don’t design space for mobility devices.

img_20150924_132114

You can die at home, but rarely in your own bed.

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Meticulously kept records of his daily status.

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My uncle was a very frugal man. These pencil stubs made us all laugh.

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I suspect these ingredients are left from before my Aunt died…when I was in elementary school.

 

IFTTT for caregivers

IFTTT for caregivers

If this, then that is a handy little free tool to automate tasks. This isn’t an app that’s going to take up a bunch of your time — I use IFTTT every day, but I only log into my account once a year or so. Set it and forget it.

Here are some tasks you might find helpful…

Send a message when you’re on your way

If someone wants to know when you’re heading home — or leaving home — this is a handy tool.

Android / Skype / Gmail

Keep your family in the loop

This is a simply way to email your whole family — or anyone you’d like on the list.

Gmail

Keep a list of notes to email yourself at the end of the day

Google

Get an alarm clock phone call

Here’s an alarm you can’t snooze.

Phone

Get an escape phone call

Have a neighborhood who’s a little too chatty? Text for help and get an “urgent” call.

Phone

Figure out your location

Not sure where you are? Or maybe this is something for your loved one to use!

Phone

Get a reminder about the rent

Or whatever other bills you have to pay. Not all of us are comfortable with automatic bill pay, so automatic reminders are a sure win.

SMS

Get a notification if it’s going to rain tomorrow

Getting caught in the rain can be pretty terrible. Get a notification to your phone to let you know when you’ll need to be prepared. You can also get an email. Want to know if the pollen count or UV index will be high? Consider it done.

Notifications


Internet of Things IFTTT tools

These applets require gadgets (that can be pricey!) but are cool enough that I couldn’t resist including them.

Start your morning routine

Turn on the lights, start your coffee, and get going.

Harmony

Blink the lights when the doorbell rings

This is perfect for the hard of hearing, or people like me who’ve learned to totally tune out background noise.

Hue

Text a caregiver if the smoke detector goes off

What happens if you’re not there when the smoke detector goes off? If you have a Nest, you can make sure you or a neighbor gets the message right away. You can also use Nest to tell you if someone’s home.

Nest

 

IFTTT also works with a whole collection of tools that can help you keep an eye on home when you’re away, but I’ve already promised some of our community members to create a separate round up of monitoring tools.

A caregiver’s guide to Facebook

A caregiver’s guide to Facebook

facebookforcaregiversWe’ve all heard stories about people using Facebook to reconnect with long-lost classmates or make new friends. I love Facebook because it helps me keep in touch with friends around the world. Now, when I call someone I haven’t spoken to in a while, I already know a little bit about what’s going on in their lives, so I can ask specific questions and skip the small talk. It’s easy to remain a regular part of someone’s life through a quick comment or share. It also lets me know when to reach out to a friend who might be in need of support. Facebook is a great tool for anyone who wants to maintain relationships with people they don’t get to see on a regular basis. It’s an amazing way to rally support when you need it — people are always online, so you’re really never alone.

If you’re not on Facebook yet, you can get started with this guide. If you already have a Facebook account, keep reading.

Facebook is a great resource, but it can cause trouble if you don’t use it wisely. I’m going to walk you through two important topics: Privacy and Pages.

First, a little terminology:

  • Newsfeed: The page you see when you first login to Facebook
  • Profile: Your webpage on Facebook or the webpage of another person
  • Page: Like a profile, but for organizations or companies
  • Wall: aka Timeline. The part of a Facebook profile or page that shows content that has been shared in chronological order
  • Post: When you share an article, an update, a photo, etc. you’re creating a post

Privacy on Facebook

One of the neat things about Facebook is you have a lot of control over what you share with who. Your profile can be public or private. In fact, you can make post only visible to specific people, a list of friends, members of a group you belong to, or friends who went to a certain school. Visit Facebook’s instructions for details on how to control privacy.

Posts to groups will either be public or private, depending on group settings.

All posts on Facebook pages are public.

ublic posts don’t just appear on the profile, group, or page where they’re originally posted. Public Facebook posts can be shared with other profiles, pages, or groups. They can appear in the timelines of people who are connected to the author, the author’s friends, the group, or the page. They can also appear in public search listings, like on Google.

What does it mean if a post is public?

If there’s someone you can think of who shouldn’t see your post, don’t put it on Facebook! This is why we encourage caregivers to vent and share personal experiences in our caregiver forums or our caregiver Facebook group.

Reasons to not share personal information on Facebook:

  • If you discuss someone else’s healthcare, you may be accused of HIPPA violations. Paid professional caregivers have been fired for posting patient information on Facebook.
  • If you complain about a family member not helping, they may see your post and it could make the situation worse.
  • If you share details of someone else’s life, they or someone they know may see it and be offended.
  • If you share personal details of caregiving, people may react negatively. Posts about hygiene, mental illness, and other sensitive topics have elicited responses that were critical and unproductive.

You deserve a safe space to openly discuss what’s on your mind. Facebook is an open forum with millions of members – including bullies and scam artists. We maintain a separate website in order to create a safe space for caregivers. Facebook is a great tool, but it doesn’t cater to caregivers.

Is this post public or private?

When you look at a post, there’s a little icon next to the date and time. If you see a globe icon, the post is public:

public facebook post

If you see something that looks like this you’ll know it’s private:

private facebook post

If you place your cursor over the private icon, you can get more information about who can see the post:

private facebook post icon

In a Facebook group

Our Facebook page shares articles from our site and other things that caregivers should know about. Our Facebook group is a place where you can connect with other caregivers.

A Facebook group is either closed or public. If a group is closed, people need to be approved by a moderator before they can join the group. All posts within the group are visible to group members only. It says ‘Public Group’ or ‘Closed Group’ under the name or the “about” section.

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Our Facebook group is a closed group, so anything you write there is only visible to other caregivers in our community.

If a Facebook group is public, anyone can join and all posts are public.

public facebook group


Connecting with Facebook pages

Controlling what shows up in your newsfeed

If you ‘like’ a page on Facebook, you can still choose whether or not you want to see posts from that page in your newsfeed. If you’re ‘following’ a page, you’ll see posts from that page in your newsfeed. If you aren’t following (like in the example below), you won’t see posts from that page in your newsfeed.

following button

You can customize what you see in your newsfeed using Facebook’s settings.

Why don’t I see Caregiver Space posts in my news feed?

Facebook can be a bit tricky sometimes. They try to guess what we want to see, but sometimes they get it wrong. Luckily, you can adjust your settings to decide what shows up in your newsfeed.
I’m going to use Donna Thompson’s page to show you how adjusting your settings works. This works for any Facebook page.
If you go to the Facebook page you want to see more of, you’ll notice there’s a little arrow on the “Liked” button. If you hover over that, it’ll show you a few options.
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If you click on the little pencil icon to the right of “In your news feed” you’ll get these options:
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If you set it to “See first”, our posts will almost always show up in your news feed. If you choose “default” it will guess based on the algorithm. If you choose “unfollow” it will un-like the page. We post pretty frequently, so if having it set to “see first” is too much, you can also occasionally go to our page and “like” or comment on a few of our posts. That will let Facebook know you want to see more from us.
You can also click on “Notifications” and it’ll give you a notification when we post things.
Inline image 3
If you select the “notifications option, it’ll show up in the notification bar, where you see the “13” in the screenshot below:
Inline image 5

Where’d my post go?

I get messages from people all the time who’ve posted something to The Caregiver Space’s page and can’t figure out where it went. Most organizations and companies aren’t as eager as we are to have people post on their pages, so Facebook puts posts by anyone who isn’t a page moderator off to the side. In this screenshot, you can see where the ‘Visitor Posts’ are…way, way down at the bottom on the right side.

visitor posts on facebook

 

We want to help caregivers connect, so we’ll usually ‘share’ your posts. However, this makes it very likely that people you know will see your post, even if they don’t ‘like’ our page. This is why we share some messages and not others. We’re not trying to censor you – your original post is still there on our page – but we don’t want to draw attention to something that might be personal.

If you’d like to connect with caregivers privately, join the conversation on our caregiver forums or our Facebook group.

We share:

  • posts asking for support
  • pictures of you and the people you love
  • relevant articles from a variety of sources

We don’t share:

  • venting
  • posts containing personal details
  • posts containing medical information
  • advertising, even requests for donations

We encourage you to share the things you need to get off your chest, requests for advice, your personal caregiving experiences, and requests for donations on our forums.

Why are they ignoring my message?

You meet someone on a Facebook page who is in the same situation as you and take the time to write them a thoughtful message. And then they never respond. What happened?

It’s likely that Facebook has filtered out your message into their ‘other’ inbox. That’s Facebook’s version of a spam folder. That’s where messages end up if you’re not ‘friends’ with someone on Facebook.

other inbox on facebook


Facebook has a lot of options and features which can get a little confusing. Don’t get too worried about it, though — the simplest thing is to just keep your information private.

Want to know more? Mashable has a great guide for Facebook beginners.

Featured image: JaysonPhotography / Shutterstock.com
A caregiver’s guide to prostate cancer

A caregiver’s guide to prostate cancer

Prostate cancer is highly treatable. You will hear over and over again that men die with prostate cancer, not of prostate cancer. You might be shocked to discover how many men you know have had prostate cancer or are living with prostate cancer. Prostate cancer is the second most common type of cancer for men worldwide.

1 in 6 American men is diagnosed with prostate cancer during their lifetimes. The vast majority — almost 100% — of men who are diagnosed with prostate cancer are still alive 5 years later.

1 in 36 will die of prostate cancer.

Nearly 3 million men in America are living with prostate cancer.

Every cancer is unique. Your treatment team will figure out how to treat your specific type of cancer.

We don’t get cancer in a vacuum — most prostate cancer patients have other conditions or disabilities to contend with as well. Other health issues can complicate things, changing how you respond to treatment and what treatments are safe for you.

Many people are successfully treated and undergo periodic prostate cancer treatments for the rest of their lives. It’s not uncommon for prostate cancer patients to live for decades with the disease.

prostate cancer is a concern for every man

Understanding prostate cancer

Diagnosis, indicators, and other tests

Prostate cancer typically doesn’t cause any symptoms in its early stages. Most men will never experience any symptoms of prostate cancer. Those who do may notice:

  • Frequent or burning urination
  • Difficulty in having or maintaining an erection
  • Pain when ejaculating
  • Blood in urine or semen
  • Pain or stiffness in the lower back, hips, or upper thighs

Those symptoms could have myriad causes, so your doctor will conduct tests before giving you a diagnosis.

Early diagnosis of prostate cancer does not necessarily reduce the chance of dying from prostate cancer. Small, asymptomatic tumors may be developing so slowly that they effectively present no risk.

Some men with prostate cancer may never know about their cancer before they die of natural causes or from another cause. Detecting non-threatening tumors is considered overdiagnosis and treating these non-threatening tumors is over-treatment. Because diagnosis and treatment all carry risks, over-diagnosis and over-treatment can cause problems for men and their loved ones.

Prostate Specific Antigen Test

The PSA test is a blood test that checks for an antigen that is elevated in men with prostate cancer. The PSA is used both as a diagnostic tool and to monitor the progression of prostate cancer.

There are other benign conditions that can elevate the PSA score, so a high score does not mean you have prostate cancer. Not all men with prostate cancer have elevated PSA levels. Of men who have an elevated PSA score, only 25% of biopsies show cancer. The other 75% of men with elevated PSA levels do not have cancer.

Doctors monitor PSA levels to look for changes in prostate cancer, to see if it’s progressing, and to see if it’s recurred. An elevated PSA level may be the first sign of a prostate cancer relapse. There is no official normal amount of PSA and PSA levels can fluctuate. Types of cancer treatments and UTIs can change PSA levels.

While PSA levels aren’t a foolproof way to diagnose and monitor prostate cancer, the generally strong correlation between PSA levels and prostate cancer make it an important tool.

The American Cancer Society provides more information to help you understand your PSA levels.

Digital Rectal Exam

During a DRE, your doctor will feel your prostate with his or her finger. Doctors are looking for bumps or hard areas. An exam can help determine if cancer is on one side, both sides, or if it’s likely to have spread beyond the prostate. A DRE relies on the subjective impressions of the doctor conducting the exam.

Transrectal ultrasound

During a TRUS, a small probe about the width of a finger is inserted into the rectum. Ultrasounds use sound waves to create echos and turn them into an image of the inside of your body. A TRUS is usually done at your doctor’s office or an outpatient clinic and only takes about 10 minutes. It feels weird, but shouldn’t be painful. If you do experience any pain, the doctor can numb the area.

A newer alternative to TRUS is a Doppler ultrasound. This measures blood flow within the prostate gland. Prior to a Doppler ultrasound, some doctors will inject you with a contrast agent.

Prostate Cancer Biopsy: The smaller malignant glands (acini) of prostatic adenocarcinoma (upper left) show invasion around and between the larger benign glands (lower right).

Prostate Cancer Biopsy: The smaller malignant glands (acini) of prostatic adenocarcinoma (upper left) show invasion around and between the larger benign glands (lower right).

Prostate biopsy

During a core needle biopsy, your urologist will insert hollow needles into the prostate to collect tissue samples. A transrectal biopsy goes through the wall of the rectum. A transperineal biopsy goes through the skin between the scrotum and the anus. It’s uncomfortable, but not painful. Your doctor will usually numb the area first and each sample is taken in a fraction of a second. The procedure usually takes about 10 minutes. Your doctor will usually give you antibiotics to take before the procedure to reduce the risk of infection.

Doctors sometimes use an ultrasound to view the prostate while taking tissue samples. They may also use an MRI. This helps the doctors make sure the tissue samples they are collecting are from areas they are concerned about.

Afterward you’ll be sore and may notice blood in your urine or from your rectum. Blood in your semen may persist for weeks after the biopsy.

Tissue from the biopsy is then examined under a microscope for cancer cells. The findings are written up in your pathology report. Because your prostate may contain cancer and the needles may not take a sample of that area of the biopsy, your doctor may do more than one biopsy if he or she is concerned about false-negative results.

The pathology report will say how many samples were taken and how many contained cancer. It’ll say what percentage of each sample was made up of cancer cells. It will also say if the cancer is on one or both sides of your prostate.

Some cells may appear abnormal, but not cancerous. These suspicious areas are called prostatic intraepithelial neoplasia (PIN). Low-grade PIN looks mostly normal, high-grade PIN looks mostly abnormal. When high-grade PIN is found, 1 in 5 men will have cancer somewhere in their prostate, so doctors will conduct another biopsy.

When atypical small acinar proliferation (ASAP) is detected, a few cells look cancerous, but there aren’t enough of them to be certain. Doctors will conduct another biopsy, usually after a few months.

Proliferative inflammatory atrophy (PIA) is when prostate cells are unusually small and there’s inflammation. It’s believed that PIA increases your risk for high-grade PIN or possibly prostate cancer.

The American Cancer Society has a guide to understanding your pathology report.

If your doctor suspects the cancer may have spread outside your prostate, they’ll use imaging to see. If the likelihood that your cancer has spread is extremely low, they may decide not to put you through the hassle, discomfort, and expense of testing.

Gleason Score

Your Gleason score is a simple way to capture your cancer’s clinical stage and grade, using a number between 2 and 10. This is composed of your two Gleason grades. Normal prostate tissue is a grade 1, very abnormal tissue is a 5. Most cancers have a Gleason grade of 3 or higher.

Because prostate cancers have different areas with different grades, grades are assigned for the two areas that make up most of the cancer. The highest Gleason grade is always included, even if it’s just a tiny spot. These grades are then added together to form the Gleason score, or Gleason sum.

A Gleason score of 6 or lower is low-grade, 7 is considered intermediate-grade, and 8 to 10 is high-grade.

Lymph node biopsy

Sometimes a lymph node biopsy is done as a separate procedure, usually when the prostate is going to be left in place but it’s suspected that the cancer might have spread to your lymph nodes. With a laparoscopic biopsy a long tube with a camera and tools are inserted through small incisions in your abdomen. Recovery usually takes only a day or two and you’ll have very small scars. With fine needle aspiration (FNA) a sample of your cells from an enlarged lymph node will be taken using a long needle inserted through your skin. Your skin will be numbed with a local anesthetic. Generally, they’ll keep you in the clinic for a few hours after the procedure, but you should feel back to normal in a day or two.

Computed tomography scan

A CT scan makes cross-sectional images of your body using x-rays. This helps doctors see if the cancer has spread to your lymph nodes, pelvis, or organs.

Bone Scan

Prostate cancer is known for spreading to lymph nodes and then the bones. Often it spreads to people’s lower spine. A bone scan is used to see if cancer has spread to your bones, before it causes damage and pain.

You’ll be injected with a small amount of radioactive material, which will settle in damaged areas of your bones. A picture is taken of your skeleton. This can identify suspicious areas, but doctors will use x-rays, CT scans, MRI scans, or biopsies to make a diagnosis.

Magnetic resonance imaging

An MRI scan uses radio waves and magnets to create a images of the soft tissues in your body. They’ll sometimes inject you with a contrast material, gadolinium, to see things clearer. An MRI can provide a clear picture of the prostate and the area around it. Sometimes they’ll insert a probe, an endorectal coil, into your rectum for the scan. You can opt to be sedated if they use the probe, as it can be very uncomfortable.

Deciding on a treatment regimen

Bring a notebook and take detailed notes when discussing treatment options with your medical team. Don’t be shy about asking them to repeat information or spell a term. You may even want to record the conversations, with their permission. Even incredibly smart people with excellent memories find themselves overwhelmed with information. It’s different when it’s your life they’re talking about. The American Cancer Society has a list of questions you should ask your doctor.

Getting a second or third opinion can seem exhausting, but it’s an excellent way to make sure you’re aware of all of your options and making the best choice for you. Your urologist, oncologist, and GP may all provide you with different information about risk factors and recovery time — they each have a different expertise and talking to all of them about the options gives you the most complete picture.

There are many factors to look at when developing a treatment plan. Doctors who have different opinions aren’t necessarily wrong, because there is rarely one right answer when it comes to treatment.

Do you have to act now?

Prostate cancer typically takes years to develop to the point where it’s detectable. You can take the time you need to make a decision about what treatment to pursue, as a few days or weeks is unlikely to change the outcome. It can be very upsetting when patients are told to wait a month for an MRI or for treatment to begin. While the waiting can be incredibly stressful, your treatment team knows it’s safe to not rush into action.

If you are elderly or in ill-health, it may be unlikely that prostate cancer will advance to the point where it’s a danger before you die from something else. In this case, you may be able to safely skip the side-effects of radiation and surgery. Instead, your doctors can make sure cancer symptoms don’t impact your quality of life. Cancer can be viewed as a chronic disease that can be managed.

If you have a slow growing cancer that’s been detected early, you may not need to treat your cancer right away. Some men can live with prostate cancer for decades before deciding to treat it. Some men may never need to treat their prostate cancer. Leaving prostate cancer untreated is not a death sentence or an act of suicide. You can talk to your treatment team about treatment options, side effects, and overtreatment and decide what you need to do to live the life you’d like to live.

When prostate cancer is detected before it has spread, it appears that surgery, external radiation, and brachytherapy all have similar cure rates. Newer types of treatment, like da Vinci robotic surgery and proton beam radiation, appear promising but have much less research and long-term data. This makes comparing treatment options as much art as science.

What’s important to you?

Do you need to act now and go big to fight against cancer? Are you comfortable putting off treatment and seeing your doctor regularly to monitor your cancer?

Do you need to know right away if surgery has removed all of the cancer? Are you comfortable waiting weeks or months to see if radiation works?

Do you want to choose treatment options that are well established and backed up by lots of research? Are you eager to go with the latest and most cutting-edge treatments?

How would you feel if you became incontinent, had bowel problems, or erectile dysfunction?

Do you have a support network in place to help you during recovery from surgery or during treatment? Are you in good enough health to be a candidate for surgery? Do you have other conditions or chronic illnesses that would complicate treatment?

Is the cancer likely to spread and cause you problems before you’d die of old age?

researching prostate cancer treatment options

Common Treatments

Every treatment carries certain risks and side effects. Even the most effective treatments overall may not be effective for you. Try to figure out which side effect profile you are most comfortable with. Remember that you and your family are the ones who have to live with the outcome of your treatment, not your doctor.

Prostate cancer patients who opt for active treatment will use a combination of therapies.

Common treatment options by stage

Stage I Watchful waiting

Radiation therapy or radical prostatectomy

Stage II Radical prostatectomy

External beam radiation and brachytherapy, alone or combined

Stage III Combinations of external beam radiation, hormone therapy, brachytherapy, and radical prostatectomy
Stage IV Watchful waiting

Hormone therapy, sometimes with chemotherapy

Combinations of external beam radiation, brachytherapy, and hormone therapy

Radical prostatectomy

TURP surgery

Bone metastases treatments

Watchful waiting

Cancer treatment has come a long way — today’s treatments are more effective and have fewer side effects. However, treatment can still be difficult to endure and have a huge negative impact on your life. Many instances of prostate cancer advance very slowly, meaning the cancer will not spread or grow large enough to impact your life before you die from another cause.

If you have a non-aggressive cancer and it has not spread, many doctors will suggest active surveillance. So long as the cancer does not grow or spread, people can live their lives without the negative impact of cancer treatment. If the cancer eventually grows or spreads, you can work with your treatment team to choose how to respond.

With active surveillance, your doctor will typically run tests every 6 months. Tests often include your PSA blood test and a digital rectal exam. Doctors may perform annual biopsies. Even if you ultimately do undergo treatment, you can enjoy additional months or years of life without worrying about side effects. Men who undergo watchful waiting have the same life expectancy as those who pursue treatment immediately.

Hormone inhibitors

Some prostate cancer tumors are fed by testosterone, so by blocking it you can starve the tumors. This is through reducing hormone levels, also known as androgen deprivation therapy.

  • Hormone therapy can be used before surgery or radiation to shrink the tumor
  • Hormone therapy is used when the cancer has spread
  • Hormone therapy and radiation may be used together to reduce the risk of cancer coming back
  • Adjuvant hormone therapy reduces the chances of high-risk prostate cancer from coming back after a curative treatment

Hormone inhibitors may be pills, injections, or small implants under the skin. Lupron is one of the most common hormone therapy drugs. These keep the body from making hormone. Needles can be anxiety inducing, but the side effects are generally mild. Some people do have side effects that are serious enough that treatment will be stopped.

Hormone therapy tends to decrease in effectiveness after 2-3 years. In order to account for this, some oncologists will have you start and stop therapy. This is called intermittent androgen deprivation.

With an orchiectomy the testicles are removed through a small cut in the scrotum. Most of the male hormones are made in the testicles. This is an outpatient procedure with low risks of complications. However, after surgery men typically have very little sexual desire and aren’t able to have erections. Many men will have hot flashes afterward, which usually go away quickly, but may persist.

Side effects vary widely based on the hormone treatment used and how your body responds to it. Common side effects include loss of sex drive, impotence, hot flashes, shrinking of the penis and testicles, breast tenderness and growth, thinning bones (osteoporosis), weight gain, loss of muscle mass, and an increased risk of circulation problems.

The American Cancer Society has information on what treatment options are still available if your cancer does not respond to hormone therapy.

Radiation

Radiation, or radiotherapy, uses high-energy x-rays to kill cancer cells. It can be used to shrink tumors, relieve symptoms, and reduce the spread of cancer.

People respond to radiation very differently. Some people find themselves overwhelmed with exhaustion and requiring significant help from family and friends. Other people continue to work through treatment. The fatigue subsides a month or two after treatment ends.

Radiation damages the cancer cells, but it also damages healthy cells nearby. The main short-term side effects of radiation include redding of the skin, diarrhea, and difficulty urinating. It’s not uncommon to see blood in your urine or stool. Some patients develop radiation cystitis. These side effects will usually go away shortly after treatment ends. Some people continue to experience problems with stool leakage even after treatment ends.

Radiation can cause bowel complications. It can also cause erectile dysfunction, although problems tend to develop in the future, rather than immediately, as with surgery to remove the prostate. Radiation can damage the nerves around the prostate, as well as the arteries that carry blood to the penis.

While undergoing treatment for radiation, your oncologist may advise you to not allow children to sit on your lap.

External Beam Radiation

EBR is typically a daily outpatient treatment. If you live near a cancer center, it could mean stopping by for 15 minutes a day. Treatment length can vary, but it’s typically around 7 to 9 weeks. In some cases, patients may need to undergo radiation as an inpatient procedure.

Imaging tests will be done to see where the cancer is, so the beams can be directed there. Radiation techs may mark the spot with ink or in another way. Two types of advanced radiation are 3D-conformal therapy (3D-CRT) and modulated radiation therapy (IMRT). These reduce the damage to nearby tissues. Some oncologists will use proton beam radiation, also called proton therapy, which uses proton beams instead of x-rays. This is thought to reduce damage to nearby tissues, although the evidence is currently inconclusive.

Brachytherapy Seeds

With high dose radiation (HDR), also known as brachytherapy or internal radiation therapy, radioactive material is inserted into your prostate to kill the cancer. Your surgeon will use a transrectal ultrasound, CT scan, or MRI to place the material in the right spot.

With short-term brachytherapy, tubes are inserted into the skin of the perineum and into the prostate. Your doctor will insert radioactive materials into the tubes, usually 3 times a day for 2 days. The treatment takes about 10 minutes each time.

With permanent brachytherapy, also known as seed implants, radioactive pellets are surgically inserted directly into the prostate. Up to 100 seeds, each the size of a grain of rice, are put into the tumor. They’ll give off radiation for weeks or months and over time will stop being radioactive. They typically don’t cause discomfort because the seeds are so small.

While you’re undergoing brachytherapy, you may need to stay away from small children, pregnant women, and pets. Some people experience burning, pain, or diarrhea, but these are relatively rare.

They can also use gel to physically move the prostate away from the other nearby organs, reducing damage to those organs.

This treatment option reduces the likelihood of impotence from alternate treatments, like the prostatectomy. Recovery is easier, compared to having your prostate removed.

High-intensity focused ultrasound

HIFU is relatively new to the US. It kills cancer cells with ultrasonic beams.

Chemotherapy

Chemotherapy is used to shrink tumors. It may be used on its own or it may be used to shrink tumors so they’re easier to remove with surgery. If the tumor can’t be removed, chemo can slow tumor growth and reduce symptoms, increasing your quality of life and lifespan.

Chemo may come as a pill or through an IV, or a needle in your vein. Since chemo goes through your bloodstream, it can damage cells throughout your body. Your oncologist will try to make the chemo strong enough to kill cancer cells without destroying too many healthy cells. Popular chemotherapies for prostate cancer include docetaxel (Taxotere) and cabazitaxel (Jevtana).

Prostate cancer patients may feel that chemo side effects aren’t as bad as they expect. There are many types of chemo, varying doses, and different frequencies, all with their own side effects. Common side effects include nausea, vomiting, hair loss, mouth sores, taste changes, and exhaustion.

Prostate cancer vaccine

Sipuleucel-T, or Provenge, is an FDA approved vaccine used to treat advanced prostate cancer that isn’t responding to hormone therapy. The prostate cancer vaccine is not mass-produced, so it’s made for each person who gets it.

Side effects typically only last a day or two, including fever, chills, fatigue, back pain, joint pain, nausea, and headache. Some men will experience problems breathing and high blood pressure.

Prostate surgery

Prostate cancer surgery has a high success rate, although the potential for side effects is high. The potential for incontinence and erectile dysfunction can cause major quality of life concerns and have a major impact on the self-esteem of prostate cancer survivors.

Regaining bladder control can take 6 months or more. You will have to exercise your bladder muscles to hold your urine, but you may experience leakage when your bladder is very full or when coughing or sneezing. Some men never fully regain control of their bladder. This can be managed through medication.

About 40% of men will not be able to achieve an erection, maintain an erection, or have a strong enough erection for sexual activity. You can start trying to have erections about 6 weeks after surgery. This is called penile rehabilitation. Loss of the ability to have an erection may not be permanent, as it may come back after as long as two years. Generally, the younger and healthier you are, the more likely it is that you’ll be able to maintain erections after prostate surgery.

Ejaculation becomes impossible after surgery, but this doesn’t mean you can’t have an orgasm. In fact, you can orgasm without having an erection. There are a variety of medications and devices that can help you resume an active sex life after prostate surgery, with or without erections.

Some factors make certain people more likely to need radiation in addition to surgery or even after surgery.

Like any surgery, the use of anesthesia and pain medication carries risk. All surgeries carry the risk of infection.

Radical prostatectomy

When surgeons talk about ‘radical’ surgery, they’re talking about ‘the root’ — meaning that a radical surgery removes the entire tumor and some of the tissue around it.

With retropubic surgery, an incision will be made in your lower belly. During retropubic surgery, your doctor will remove lymph nodes near the prostate to check them for cancer. Sometimes doctors will check the lymph nodes for cancer right then, called a frozen section exam. If they do contain cancer, your doctor may not remove the prostate and will instead talk to you about other treatment options. Usually the lymph nodes are simply removed and sent to a lab to be examined later.

If the bundle of nerves on either side of the prostate, which are needed for erections, have not been impacted by the cancer, your surgeon will leave them. This is what they mean when they talk about ‘nerve sparing’ surgery. Nerve sparing surgery does not guarantee that you’ll be able to have and maintain an erection after surgery, but it does improve your chances.

With perineal surgery, your doctor will make an incision between your scrotum and your anus, known as the perineum. This type of surgery is more likely to damage your nerves, but it is often a shorter operation.

With laparoscopic surgery, your surgery will be done through several small cuts, usually 4 small incisions in the abdomen. A camera and special instruments will be used to remove your prostate. The da Vinci system and SMART surgery are two types of robotic-assisted laparoscopic prostate removal.

After a radical prostatectomy, you’ll usually have a catheter for about a month. You’ll also experience pain after surgery, but your treatment team should be ready with a pain management plan to keep you comfortable during recovery.

You may be given postoperative radiotherapy (XRT). XRT increases survival rates in high-risk prostate cancer patients. Internal soreness from XRT can last months, either from the radiation itself or scar tissue forming from surgery. People with XRT are also more prone to UTIs, so it’s important to stay hydrated.

Cryosurgery

With cryosurgery, also called cryoblation, your tumor is killed by freezing it. Long, thin needles are inserted into your perineum and into the tumor. They’re then filled with very cold gasses, freezing the tumor. The surgeon will use a transrectal ultrasound (TRUS) to guide the needles into position. Men who undergo cryosurgery are more likely to experience erectile dysfunction.

Transurethral Resection of the Prostate

TURP does not treat the cancer, but it does make it easier to live with the cancer. Some tumors grow to block the urethra, making it difficult or impossible to urinate. This surgery removes the blockage. This is a good option for men who aren’t able to have a radical prostatectomy and are having difficulty urinating.

Stages

AJCC TNM staging

The American Joint Committee on Cancer TNM staging system describes how far the cancer has spread. It’s made up of:

  • The primary Tumor
  • The status of the lymph Nodes
  • Whether the cancer has Metastasized
  • The PSA level at diagnosis
  • The Gleason score

The clinical stage is based on your doctor’s estimate from the DRE, lab tests, biopsy, and imaging. If you’ve had surgery, the doctor can determine the pathologic stage.

Tumor staging

  • T1: No tumor can be seen or felt
    • T1a: Cancer is found during a TURP and is less than 5% of the tissue
    • T1b: Cancer is found during a TURP and is more than 5% of the tissue
    • T1c: Cancer is found by needle biopsy
  • T2: The tumor can be seen and/or felt, but is confined to the prostate
    • T2a: The cancer is in one half or less of one side of your prostate
    • T2b: The cancer is more than one half of only one side of your prostate
    • T2c: The cancer is in both sides of your prostate
  • T3: The cancer has grown outside of your prostate
    • T3a: The cancer is outside the prostate, but not in the seminal vesicles
    • T3b: The cancer is in the seminal vesicles
  • T4: The cancer has spread to your urethral sphincter, recutm, bladder, and/or pelvis

Lymph node staging

  • NX: Lymph nodes have not been tested
  • N0: Cancer has not spread to any nearby lymph nodes
  • N1: Cancer has spread to one or more nearby lymph nodes

Metastasis staging

  • M0: Cancer has not spread beyond nearby lymph nodes
  • M1: Cancer has spread beyond nearby lymph nodes
    • M1a: Cancer has spread to lymph nodes outside your pelvis
    • M1b: Cancer has spread to your bones
    • M1c: Cancer has spread to other organs

TMN stages

You can view the TMN classification for prostate cancer on Medscape.

Stage I

Stage I prostate cancers are small and fully contained in the prostate. They have a low PSA level and a Gleason score of 6 or less. They grow slowly and may never cause any symptoms or health problems.

If you are young and healthy, you may opt for watchful waiting, knowing you may need to treat your cancer at some point in the future. Some people want to treat their cancer right away and go forward with radiation therapy or have their prostate removed. Men who are elderly or in ill health often choose to monitor their cancer and may escape having to ever treat it.

Stage II

Stage II prostate cancers are still contained in the prostate, but are more aggressive. They are larger, have higher Gleason scores, and have higher PSA levels. Stage II cancers are more likely to eventually spread and cause symptoms.

Active surveillance is still an excellent option for Stage II cancers, especially when it’s not causing any symptoms. Men who are elderly or ill often choose to skip treatment, as they are unlikely to suffer any ill effects from the prostate cancer.

Men who are young, healthy, and/or want to treat their cancer may decide to have their prostate removed or treat the cancer with radiation.

Stage III

At this point, the cancer has spread outside the prostate, but it hasn’t gone very far. At this point, most people will have their prostate removed, get radiation, or have hormone therapy. While it hasn’t yet spread to lymph nodes, it’s now considered more likely to come back after treatment, even if it’s successful. Some people with stage III prostate cancer will still decide that watchful waiting or less aggressive treatment is the best choice for them.

Stage IV

Stage IV prostate cancer has spread out of the prostate and into other areas. It may be in your bladder or rectum, to nearby lymph nodes, or in other organs. Any place the cancer has spread outside of your pelvis is considered ‘distant.’ Your experience and prognosis will be very different, depending on how far the cancer has spread and where it has metastasized.

While sometimes stage IV prostate cancer can be cured, most of the time you will have cancer the rest of your life. Many men live with incurable prostate cancer for years and can continue enjoying their lives. At this point, most doctors will aim to shrink the tumors and keep the cancer from spreading further. They will also provide you with treatment in order to improve your quality of life — so you can continue spending time with your family, working, and enjoying hobbies — and make sure you aren’t in pain.

Bone metastasis

Prostate cancer nearly always spreads from the lymph nodes to the bones. Once cancer has spread to the bones, it can cause fractures, breaks, and intense pain. If you have extreme pain in your lower back or hips, you should go to the ER immediately. Doctors can help stabilize your bone structure and manage your pain. The American Cancer Society has information on managing cancer pain.

Bone metastasis, while serious, it is not likely to kill you. People can live for years after cancer has metastasized in their bones. High blood calcium levels can be dangerous.

There are specific treatments for prostate cancer once it’s reached your bones.

Bisphosphonates slow down bone cells called osteoclasts. Osteoclasts can become overactive when you have prostate cancer, so bisphosphonates can help relieve pain and high calcium levels, slow the growth of cancer, and help strengthen bones if you’re getting hormone therapy. The most common bisphosphonate is zoledronic acid, or Zometa. You’ll get this through an IV about once a month, along with supplements for calcium and vitamin D.

Bisphosphonates can leave you feeling like you have the flu. They may aggravate any joint or bone pain you’re already having. They can also cause kidney problems, so make sure your whole treatment team knows about any kidney problems you might have.

The most serious side effect from bisphosphonates is osteonecrosis of the jaw (ONJ). This is rare, but can lead to tooth loss and jaw infections, so you should have a dental checkup before you start treatment. You should not have any dental work done during treatment and you should carefully floss, brush, and get regular dental checkups. You can learn more about ONJ from the team at Savor Health.

Denosumab, also known as Xgeva or Prolia, also blocks osteoclasts. It can help prevent fractures and slow the spread of cancer. It’s frequently used for men when bisphosphonates and hormone therapy aren’t working as well as they should. It’s typically injected once a month, along with calcium and vitamin D supplements. Denosumab can cause nausea, diarrhea, and leave you feeling exhausted. It also puts you at risk for ONJ.

Radiopharmaceuticals kill cancer cells in your bones. They’re administered through an IV and settle into damaged areas of your bones, so they reach cancer in your bones throughout your body. The most common radiopharmaceuticals are strontium-89 (Metastron), samarium-153 (Quadramet), and radium-223 (Xofigo). These drugs decrease your blood cell count, which puts you at risk for infections and you have to be very careful about bleeding. Different drugs can cause different side effects, so ask your treatment team what to expect.

Clinical trials

In order to gain FDA approval, treatments must go through clinical trials. Clinical trials give you access to the latest treatment options and methods of controlling side effects. However, there’s no guarantee that these treatments will work, be worthwhile, or be safe. Your doctor can help you decide if the risk of a clinical trial makes sense for you.

Cancer.net is an excellent resource for learning about how clinical trials work and finding clinical trails recruiting participants.

Other conditions

Half of all adults in the US have a chronic disease or condition. Other conditions may limit your ability to tolerate treatment options and make certain procedures unsafe for you.

Your treatment team will let you know how your concurrent conditions impact your cancer and treatment options. If treating or managing both simultaneously isn’t an option, your doctors will generally treat whichever condition is the most serious.

Diabetes

Prostate cancer is slightly less common in men with diabetes. Some diabetes drugs have even been shown to aid prostate cancer treatment. However, other studies show that men with diabetes have more serious cases of prostate cancer.

Heart disease

Men with heart disease are more likely to experience bowel and urinary problems after prostate cancer treatment. Androgen deprivation therapy (ADT), also known as hormone therapy, may increase your heart attack risk.

Choosing a medical team

Prostate cancer is very common. Any large hospital will have an excellent staff, capable of providing you with top-level prostate cancer treatment.

If you decide to treat your prostate cancer, you will likely use several types of treatment, each with its own specialists. You may also require various experts to help you manage symptoms and treatment side effects.

doctor adjusting infusion

Your treatment team

General practitioner or family doctor

Your GP will continue to provide support and information, although he or she will likely take a back seat to your oncology/urology team. Your GP can be a fantastic resource for managing other conditions you have, as well as managing side effects.

Urologist

Urologists are specialists in the urinary tract and reproductive organs. This includes the urethra, bladder, and kidneys. This includes treatments for cancer, incontinence, and sexual function.

If you’re about to go to your first urology appointment, you can learn what to expect.

It’s common for urologists to perform surgery:

  • Biopsies
  • Cystectomy
  • Prostatectomy
  • Transurethral resection of the prostate
  • Transurethral needle ablation of the prostate
  • Sling procedures
  • Opening blockages or making repairs

A urologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. A urology resident is undergoing this training in a hospital, but has already completed medical school. Urologists are certified by the American Board of Urology after completing a certification exam.

Urologic oncologist

A urologic oncologist is a urologist who specializes in cancer care. They treat:

  • Masses or tumors of the adrenal glands
  • Kidney masses, cysts, or cancer
  • Bladder cancer
  • Prostate cancer
  • Testicular cancer
  • Penile cancer

A urologic oncologist has completed all of the requirements to become a urologist and then completed an additional year or two of training in urologic oncology. A urology fellow is undergoing this additional training. Urologic oncologists are certified urologists; there is currently no additional certification for their specialization.

Medical oncologist

An oncologist is trained to diagnose, stage, and treat cancer. They specialize in using chemotherapy and hormone therapy. Your medical oncologist is often the best person to talk to when deciding on the right treatment for you. Your oncologist keeps up with the latest research and can connect you with clinical trials. Typically, your oncologist will be the point person for your cancer care and will coordinate with the rest of your medical team.

An oncologist can also help you manage symptoms and side effects. Your oncologist will also typically be the one to start palliative care or hospice care.

A medical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They are then licensed by the state to perform medical oncology.

Radiation oncologist

A radiation oncologist specializes in treating cancer with radiation. They can also help you choose between your treatment options and manage your side effects and symptoms.

A radiation oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They must pass an exam from the American Board of Internal Medicine. Radiation oncologists must pass an exam to be certified by the American Board of Radiology. Certification must be renewed every 10 years.

Oncological surgeon

A surgical oncologist performs biopsies as well as removing tumors. They are critical for staging your cancer as accurately as possible.

A surgical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. Surgeons who specialize in oncology are tested and certified by the American Board of Surgery.

Pathologist

A pathologist performs and interprets imaging tests, like x-rays, ultrasounds, and MRIs, to diagnose and monitor your cancer. They also examine tissue samples. They are important for making treatment recommendations.

A pathologist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They are certified by the American Society for Clinical Pathology. A pathologist who has a specialization has undergone an additional 1-2 years of training.

Pain specialist

A pain management specialist can evaluate, diagnose, and treat pain. There are a huge variety of types of pain, causes, and treatment options. A pain management specialist may also coordinate physical therapy, psychological therapy, and rehab.

A pain management specialist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They then completed at least one year of additional training in pain management. They may be certified by the American Board of Anesthesiology, The American Board of Psychiatry and The American Board of Neurology, or the American Board of Physical Medicine and Rehabilitation.

Oncology nurse

Nurses are a tremendous resource for education and support. They are often the primary point of care, rather than a doctor. Many nurses specialize in a certain type of care, such as in oncology or urology. A nurse may monitor your condition, prescribe medication, and administer treatment.

A nurse (RN) has completed a 4-year college degree and passed the National Council Licensure Examination (NCLEX). An oncology nurse (OCN) has worked as a nurse for at least one year, with 1,000 or more hours in oncology, and been certified by the Oncology Nursing Certification Corporation.

X-ray & radiology technician

An x-ray tech, or radiologic technician, uses special equipment to take images of the inside of your body. These images are then ready by a radiologist or pathologist.

An x-ray tech (RT) may have a 2- or 4-year degree run by a program accredited by the Joint Review Committee on Education in Radiologic Technology (JRCERT) or The American Registry of Radiologic Technologists (ARRT). Certification by ARRT is not mandatory, but most medical centers require it. Most states also require that x-ray techs are licensed.

Oncology dietitian nutritionist

A registered dietitian who is a certified specialist in oncology nutrition (RD CSO) can help you manage the side effects and symptoms of prostate cancer and treatment. You can learn more about what to expect when working with an oncology dietitian and how to get the most out of working together.

Remember that anyone can call themselves a nutritionist. An RD has a 4-year college degree, 6-12 months of supervised training, and is certified by the Academy of Nutrition and Dietetics and Commission on Dietetic Registration. An RD CSO has 2,000 additional hours of oncology training and passes a certification exam every 5 years. Some registered dietitian nutritionists refer to themselves as RDs, others use the term RDN. They both indicate the same training and certification.

Pharmacist

A pharmacist is an expert in knowing what each cancer medication is used for, potential side effects, and potential interactions. Your pharmacist knows all of the medications you take, as well as any supplements, so they may catch potential problems when different specialists prescribe medications that may interfere with each other or cause problems for other reasons.

A pharmacist completes both a 4-year undergraduate and a 2-year graduate degree. They are then licensed by the state.

Physical therapist

Physical therapy can help prostate cancer patients maintain strength, mobility, and function. With prostate cancer it can help offset bone weakening from hormone therapy.

Physical therapist assistants have a 2-year degree. A physical therapist will have a master’s degree or a doctoral degree from an accredited program. They are then licensed by the state.

Oncology social worker

A social worker can provide a wide range of counseling services and support for prostate cancer patients and their families. An oncology social worker will connect you to resources, help navigate health insurance coverage, and support you as you cope with the emotional aspects of cancer.

A social worker has a bachelor’s and master’s degree (MSW). They must pass the Association of Social Work Boards exam and meet other requirements to be licensed by the state.

Supporting treatment

The healthier you are, the better your chances are of beating cancer. Eating nutritious foods can help you manage side effects, reduce fatigue, and maintain your strength. Keep exercising, or start now.

Diet

While eating healthy is important, this isn’t the time to dramatically change your eating habits. If you suddenly go vegan or start juicing obsessively you can put yourself at risk for nutritional deficiencies — plus, you’re making your life more complicated during a difficult time.

This is a great time to start introducing small changes to what you eat to make things healthier. Eat a little less meat and a little more veggies. Substitute unhealthy snacks with a homemade version or a healthier option. The Savor Health website has lots of tips on how to do this and our cookbook has 150 recipes for you to try.

This is the time to stop smoking and cut back how much alcohol you drink.

Learn more about using what you eat, and how you eat, to manage your treatment side effects.

Exercise

Exercise has been linked to an increased survival rate for some cancers, like breast cancer and colorectal cancer. While it hasn’t been specifically studied for prostate cancer, which already has a very high survival rate, evidence suggests it could be helpful. Studies suggest brisk walking has a positive impact on prostate tumors. We know that people who are active have a lower rate of aggressive prostate cancers.

Learn more about how you can safely get fit, and stay fit, as a cancer patient.

CBD oil

CBD oil, or cannabis oil, has become a popular home remedy for treating prostate cancer. Most people who use CBD oil also get traditional treatment for their cancer. Unfortunately, there have not yet been reputable studies on its use as a treatment.

This experimental treatment is only legal if medical marijuana is legal in your state and you follow proper procedures.

Self-care

It’s important to keep doing the things you enjoy. Make new happy memories. Stay in touch with your close friends. Spend quality time with your family. Remember what you are fighting for; your life is more than just healthcare.

Prognosis

You’re very likely to develop prostate cancer, but it’s not likely to kill you. Of people who are diagnosed with prostate cancer, this is how many of them are alive in 5, 10, and 15 years:

5 years Nearly 100%
10 years 98%
15 years 95%

Even when prostate cancer is incurable, you can live for a very long time with a terminal illness.

People who are diagnosed with prostate cancer that is contained within the prostate or has spread to nearby areas have a 5 year survival rate of nearly 100%. Once the cancer has spread to distant lymph nodes, bones, or other organs, 1 in 3 men will still be alive in 5 years.

Of course, you aren’t 1 in X people, you’re an individual. Statistics can give you an idea of what to expect, but every person’s experience is unique. This is why your doctor may be reluctant to give you a clear idea of how long you have to live, your odds for successful treatment, and what to expect — there’s no way to know for sure what will happen to you.

Cancer treatments are improving all the time. 1 in 3 men diagnosed with prostate cancer in 1975 did not live to see 1980. Your odds are a lot better today.

Living with cancer: Quality of life

Pain management

Having cancer doesn’t mean you’ll be in pain. When you do experience pain, your treatment team can help you relieve it. There’s no need to be stoic — your doctors and nurses are there to keep you comfortable.

Many people are concerned about becoming addicted to pain medications. This is incredibly rare among prostate cancer patients. Talk to your doctor or pain management specialist about your concerns.

Nutrition

Blocking testosterone can increase the natural process of bone loss due to age, causing potentially serious problems. After having hormone therapy or an orchiectomy, you should make sure to get plenty of calcium and vitamin D. Your doctor or oncology dietitian can help you determine the right amount. Radiation therapy and certain types of chemotherapy can also decrease bone density. Your doctor can measure your bone density and provide you with medications.

You should not get more than 1,500 mg of calcium a day. Two servings of dairy a day will generally provide plenty of calcium without providing too much.

Stress and uncertainty

Living with the symptoms of cancer, treatment side-effects, and stress of dealing with a potentially deadly disease can be incredibly stressful.

Connecting with other patients and survivors can be incredibly helpful when dealing with the uncertainty of living with cancer. Most hospitals have support groups for cancer patients. Large hospitals will have groups specifically for prostate cancer. Even if support groups aren’t your style, get in touch with other people who’ve experienced prostate cancer in whatever way you feel comfortable.

Sex and masculinity

Prostate cancer’s impact on your ability to have sex the way you’re used to having it can be incredibly distressing. It can be helpful to talk to a counselor or psychiatrist who specializes in sexuality. Men find that they feel generally unhappy with life or less like themselves when their sex life changes dramatically for the worse.

Hormones have a huge impact on how you feel about yourself and your personality. Hormone therapy dramatically changes your hormone levels. It can also change the way you look and your sexual desire. Talk to your treatment team about the side effects and how you can cope. The side effects of hormone therapy have a huge impact on the traits men associate with their masculinity: virility, libido, strength, and endurance. It can be shocking for a man who’s had a high sex drive and an active sex life to suddenly find himself without any libido. Our sexuality is an important part of how we view ourselves.

Depression is a common side effect of hormone therapy, so don’t be ashamed to ask for a referral to a psychiatrist as soon as you start to feel down. You may also experience problems concentrating or remembering things.

Any prostate cancer treatment can make it more difficult for you to get and maintain an erection, not just surgery. In fact, 4 years after surgery, the rate of men who report ED is the same for both radiation and surgery. Doctors don’t understand why some men lose their ability to have erections while others don’t.

Some doctors believe that it’s important for men to get erections soon after surgery, often with the help of medications such as sildenafil (Viagra), tadalafil (Cialis), or vardenafil (Levitra), to keep the tissue healthy. You can also use penile injections or vacuum devices to create an erection. It is thought that the increased blood flow to the penis helps the nerves heal, even if you aren’t able to get an erection. Many men find that they can orgasm without an erection. You can please your partner without requiring penetration.

Regardless of your ability to get an erection, you can still be sexual. Sexual touching, alone or with a partner, can help you feel like yourself and learn to feel comfortable with the changes your body is going through. Remember that you and your partner are going through a lot of stress and that changes in sexual desire may have nothing to do with appearances or skill. Talk to your partner and your urologist about your options.

You can learn more from the American Cancer Society’s guide on sexuality for men with cancer.

Incontinence and urine leakage

Incontinence and urine leakage is a temporary side effect for most men, but sometimes it’s here to stay. Up to half of men experience leakage a year after surgery. More experienced surgeons have lower rates of incontinence after surgery. It’s no shock that incontinence is a huge psychological burden.

Thankfully, most men who experience incontinence are able to regain control through pelvic muscle exercises, bladder control techniques, biofeedback, electrical stimulation, and medications. Avoiding caffeine can also help.

Your career

Some men work through prostate cancer treatment, while others are unable to continue working. This depends on what sort of career you have and how flexible it is, as well as what treatments you choose and how your body responds to treatments.

If you aren’t in pain or are able to manage your pain with medications that don’t interfere with your ability to think clearly, you may be able to continue working. You may find that you need to take breaks throughout the day because you have less energy.

Survivorship and preventing recurrence

Cancers that can’t be cured can often be managed like a chronic illness. Even when your cancer is cured, many cancer survivors are worried about it coming back. Learning to live with cancer can be very stressful.

Your treatment team can work with you to develop a survivorship care plan. This plan should outline what sort of follow-up tests are necessary and a schedule for monitoring your cancer status. It should clearly explain what side effects may last or even start after treatment has ended. Some treatment side effects appear years after treatment. Your doctor should explain what symptoms you should look for as a sign of recurrence or related health problems. It should also explain dietary changes and exercise regimens that can help reduce your risk of the cancer coming back. Cancer survivors have worse diets than people who’ve never had cancer.

Doctors commonly recommend PSA tests every 6 months for the first 5 years and once a year after that. Your treatment team may also recommend bone scans or other imaging tests. Prostate cancer may recur years after treatment, or you may develop a secondary cancer. Men who’ve had prostate cancer are more likely to get small intestine cancer, bladder cancer, thyroid cancer, thymus cancer, and melanoma. If you’ve had radiation, you are more likely to get rectal cancer or acute myeloid leukemia. This makes monitoring and follow-up care especially important.

It’s important to keep copies of your medical records. You will need these to make sure your treatment team always has access to the information they need, when they need it. Be sure to look over your medical records to check for missing information and errors.

wife concerned about her husband's health

For family, friends, and other caregivers

Talking about medical problems can be difficult for many men, so when it’s connected to their sexual function, it certainly doesn’t get any easier.

Caring for someone with prostate cancer

If someone you care about has prostate cancer, the first step is to talk to them and see how they’re doing. This can give you an idea of how you can support them. Remember, you can’t save your loved one. He’s still able to make his life choices and everyone is best off when those choices are respected.

Some people are eager for help researching their health and having company and support for doctors visits. Others aren’t. Don’t force it. On the other extreme, there’s no need to make cancer a forbidden topic. Pay attention to his response when you ask questions to see when your attempts to be helpful feel like prying and nagging.

People with prostate cancer often appreciate help around the house, with meals, with errands, and transportation to and from appointments. Walking the dog and helping with childcare can be a wonderful way to help.

Don’t turn your relationship into a chore. Keep doing the things you love to do together, even if you have to modify them or get creative. Dying of cancer is difficult, but this will not be a totally bleak experience. There is still joy ahead, even in the dying process.

One important thing is to not turn to the patient for support in dealing with your own struggles with their illness. You don’t need to keep a happy face all the time — in fact, you shouldn’t — but it’s best to seek outside support. Talk to your other friends and family members about how you feel. If your emotions are interfering with your life, or even if they’re not, working with a professional counselor can be incredibly helpful.

What kind of support do prostate cancer patients need?

When friends and family hear someone they care about has been diagnosed with cancer they want to help, but many people aren’t sure how to help.

Many men resist going to the doctor, even when they know something is wrong. Congratulate him on being brave and proactive about his health. Acknowledge that getting a cancer diagnosis is terrifying, but that most men with prostate cancer either never have to treat it or are successfully cured. There’s no need to start planning any funerals.

Don’t pressure someone to talk about their feelings. Let people know you’re there and ready to listen, if and when they want to. The most important thing is just being there. Do fun things together — and keep him company for the not-so-fun things.

Don’t force him to get healthy. Radical changes in diet and exercise can be traumatic when so many other things are going on. If you’d like to help him eat healthier, find healthier recipes of the foods he loves rather than trying to force him to eat different foods. That includes junk food. Sneak in a few more veggies. If he drinks lots of soda, help him to cut back gradually and experiment to find alternatives he enjoys drinking.

Don’t let cancer take over his life. Help him stick to his normal routine, hobbies, and activities as much as possible. Encourage him to continue doing the things that give his life meaning.

If you spend a lot of time with someone, you may notice that they’re not feeling well before they do. You may also spot side effects and other signs that something’s wrong. Check in to see if he’s feeling alright and encourage him to talk to his doctor or even seek emergency treatment if symptoms are serious enough.

Remember that it’s his body and his life. Express your concerns, but respect his decisions. Be sure to give him a chance to talk to his treatment team privately. That’s normal and doesn’t mean he’s trying to exclude you from his support team.

During diagnosis

Getting a prostate cancer diagnosis can be incredibly stressful, in part because it takes so long to get an official diagnosis. Waiting weeks or months to determine whether or not he has cancer, what stage it is, and what treatment is necessary is incredibly stressful.

Sometimes distraction is the best plan of action. Throwing himself into work or other projects doesn’t mean he’s in denial.

Remember that ultimately any treatment decisions are his decision. You can express your concerns and opinions, but once he makes a decision it’s your place to support him. There is never a single correct course of action in medicine, so whatever decision he makes is the right choice for him.

And, it’s a cliche, but don’t forget to take care of yourself. There are tools to help.

When not in treatment

Even when someone is not undergoing treatment, knowing he’s living with cancer can weigh heavily on his mind.

  • Be around to listen
  • Don’t forget to do the things you normally do together

During treatment

Don’t forget to treat him like a normal person. He’s not just an inspirational cancer fighting figure, he’s still the person he’s always been.

  • Giving rides to and from appointments
  • Help carrying out doctor’s advice, if they’re open to it
  • Help make sure he’s eating enough and staying hydrated
  • Help with household chores and yard work
  • Help caring for children and pets
  • Preparation of healthy meals and snacks
  • Be there to listen
  • Do things together, even if it’s just watching TV together

During recovery

Getting back to normal after prostate cancer can take months — or years. Some people never feel like their old selves again, which can cause feelings of grief as they adjust to their new lives.

  • If he is dealing with incontinence, choose seats and activities where there is easy bathroom access
  • Giving rides to and from appointments
  • Help carrying out doctor’s advice, if they’re open to it
  • Help make sure he’s eating enough and staying hydrated
  • Help with household chores and yard work
  • Help caring for children and pets
  • Preparation of healthy meals and snacks
  • Be there to listen
  • Do things together and help him get back to his normal activity level

As a survivor

Prostate survivors may find themselves worrying about the cancer coming back. They may still be coping with long-term effects of treatment and cancer, even as survivors.

  • Find ways to make reducing the risk of recurrence fun, like cooking together or going for a hike
  • Show compassion for his experience and support him

Anticipatory grief

Some men will live for years with terminal cancer. This can be incredibly difficult for families and friends to cope with. Knowing that someone will die of cancer and experiencing the rollercoaster of treatment success and failure can be devastating. Nothing can prepare you for the emotions of dealing with a long-term illness.

Therapy and other professional support isn’t just for patients. Don’t hesitate to get support for yourself.

Hospice & palliative care

Many families find that calling in hospice care early is a wonderful support system. Many hospice programs provide:

  • Visits from a nurse to answer questions and make sure the patient is comfortable.
  • Visits from a health aid to help with bathing and other tasks.
  • Assistance with acquiring and giving pain medications and other prescriptions.
  • Access to social workers and chaplains to help the patient and family prepare for the end of a life.

A home health aid can help you with bathing, toileting, and other tasks family members may be uncomfortable doing. Getting outside help is a great way to allow you to focus on being a family, rather than healthcare and personal care providers.

Understanding risk factors for prostate cancer

Prostate cancer is rare among men under the age of 40. The average age of diagnosis is 66.

African American men are more likely to develop prostate cancer. Native Americans and Asians have a lower rate of prostate cancer.

Men who have a father or brother with prostate cancer also have a higher risk of developing prostate cancer.

your family history influences your risk of prostate cancer

If prostate cancer runs in your family

Screening for prostate cancer

If you have a family history of prostate cancer, you should start getting screened 5 years before the youngest first degree male relative was diagnosed. If there’s a genetic mutation involved, you should start getting screened no later than the age of 40. Genetic counseling is recommended if 3 or more relatives had aggressive prostate cancer or if there is a family history of breast, ovarian, or pancreatic cancer. When possible, family members with cancer are tested first.

These are just general guidelines, so you should talk to your primary care physician to determine when is the best time to start screening and discuss a referral to a genetic counselor.

Preventing prostate cancer

Unfortunately, prostate cancer has not been clearly linked to any preventable risk factors. Some cancers have well documented causes, prostate cancer does not. Cancer Research UK has an excellent guide to known and possible factors influencing your risk of developing prostate cancer.

Evidence suggests that maintaining a healthy weight reduces your risk of developing prostate cancer.

Eating a plant-based diet providing a range of nutrients and getting regular physical activity can reduce your risk for developing cancer in general, although we don’t know that it can reduce your chance of developing prostate cancer specifically.

Other prostate cancer resources

Prostate cancer guides

My Prostate Cancer Roadmap – Janssen Biotech, Inc.

Diet, Nutrition, Physical Activity and Prostate Cancer – World Cancer Research Fund International

After Diagnosis: Prostate Cancer – American Cancer Society

What’s new in prostate cancer research? – American Cancer Society

Harvard Prostate Knowledge: Patient Perspectives – Harvard University

Supportive organizations

Urological Care Foundation

National Association for Continence

Prostate Cancer Foundation

The Caregiver Space

ZERO: The End of Prostate Cancer

Men Who Speak Up

Prostate cancer blogs

MaleCare: Advanced Prostate Cancer

Invasion of the Prostate Snatchers

Living with Prostate Cancer

Prostate Cancer InfoLink

The Palpable Prostate

Yet Another Prostate Cancer Blog


Originally published on Savor Health

Thoughtful gifts for family caregivers

Thoughtful gifts for family caregivers

It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:

Your time.

We’re hoping you’ll call and say:

  • You’re free this weekend and would love to keep an eye on mom.
  • You can take her to the doctor’s the next few appointments.
  • You’re running to the store and would be happy to pick up whatever I need.
  • You’re going to come mow the lawn this week, so what time works for me?

Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.

Coloring books

From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained

 

Helpful guides

There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.

Inspiration and affirmations

We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.

Time for introspection

Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.

A great companion gift is the promise to help out for an hour or two every week to give them time to write.

Peace of mind

Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.

Time together

Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.

A good rest

It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.

Daily support

We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.

Practical help

I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.

If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.

perfect gift for family caregivers