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.
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to be sad, angry, depressed, lonely, irritable, short tempered, sometimes confrontational with strangers, cold hearted, withdrawn and just don’t care about anything and anyone.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.
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.
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.
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.
I am exhausted, overwhelmed, and frustrated some days and some days are so very rewarding. I do it for love.
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.
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.
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.
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.
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.
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!
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.
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.
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.
It is a challenge.
It is a burden.
Above all of that it is a responsibility.
We are the capeless heroes that never get a casserole.
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.
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.
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.
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.
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.
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.
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.
You can come up with something a little more tactful, yes, but there’s no positive spin on what it really is.
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.
Not a choice an obligation to the ones we love
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.
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.
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.
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.
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.
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”.
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.
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.
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.
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.
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.
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.
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!
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.
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.
Coping with stress is a constant challenge for caregivers. Coping mechanisms that are actually realistic for caregivers is a pretty frequent topic of conversation. Here are some of the suggestions that came up recently.
After the day I had, tonight it was a glass of wine and later ice cream with a banana and chocolate syrup. I know, not good! But it helped — LOL – Deb
I make a cup of tea when I get home, then snuggle up with my cat & listen to her purr. If that doesn’t work, vodka! – Jen
I am not in a position to take time off. What this means is my brain will not let me rest by staying in a hotel room, or anything like this. It has to be short lived, such as being able to drive on my own to get stuff done, where I decide to stop and watch movie or pick up a treat. After 7 years of living like this, the means to cope with stress have been worked in. No, it doesn’t always work. I have found for myself, I need to give myself permission to fall apart and if it is an off day, so be it. I know, easier said than done. The bathroom with the handicap style shower, with a place to sit and rails, I have set up to have a spa feeling. I have similar relaxing plans for the garden. The porch on the other side is being groomed to be a place to sit and relax, since dad likes to read outside. – Brieya
Spend a few quiet moments in bed before getting up in the morning, using that time to scroll through Facebook and Pinterest. Do a daily morning workout and yoga in my bedroom in the AM while mom is doing YouTube chair yoga in the other room. Listen to some positive Pandora music when showering and getting dressed. Take mom to the park or the beach to soak up some Vitamin D. Read when I have free time. Enjoy an evening walk with my husband and return to a nice glass of red wine. – Paola
I cope with God, wine, and music!!! – Mayra
A nice long drive in my car 🚗 – Naomi
Tomorrow is another day and I will be there to help, no matter what the day brings. Some days I have a glass of wine or a beer before going to bed. – Mary
Play video games on my phone. Seriously. I am so the bomb at Cooking Dash. I’m amazing! – Kim
Yoga. Prayer. Chocolate. – Carol
Lots of prayer, reading posts on FB with encouragement and positive words, get enough sleep, walking several miles every day, take DHA fish oil and Sam-E, listen to music and sing along with the radio. – Sheron
Get lost in a good book, bike on my recumbent bike and sing loudly to favorite songs…and, of course, pray! – Susan
Bubble bath+ buttermint tea! And shopping!🤣 – Jona
I listen to music, talk to one caring friend, go feed my horses–they’re old so it’s all I can do. – Carol
I would LOVE to be able to garden again, but I have become physically disabled due to spinal injury, I can’t do that, so I try and get a little bit accomplished around the house, in addition to caring for hubby, before I mindlessly play solitaire on my phone. – Kathryn
I work outside about an hour a day in my flowerbeds and garden. And I tend to do it when my husband is napping. Therefore I have peace and quiet. – Stephanie
Writing. I hope to one day write a book on my experience as a caregiver. – Sara
Try to go for a run(as if)…try to do sewing for myself or my children…otherwise, go into function mode and get on with what must be done. – Tracey
Gardening! And the occasional shopping trip, on or off-line, and oh yessss the choc-o-lat-tayyy!!! – Wendy
Long hikes in the woods is the best way for me right now. – Penny
Chocolate and talking to my sweet golden retriever. Unfortunately he’s old and wearing down along with my hubby. I can’t even go there… – Debra
I have not de-stressed well at all since my best friend, my dog Diego died 2 years ago at 16.5 years old. He was my zen. He instantly calmed me. We went for walks and snuggled a lot. I’m a 6 hour drive from my husband and have only been able to see him 2-3 times a year for 4 years now. I’m considering leaving my mother (my whole family agrees) as she isn’t open to any options (move up with my husband and I, assisted living) and my mental health has bottomed out. – Salem
I don’t get to relax – my hair has all but fallen completely out – when I can I go visit with my horses which I haven’t ridden in over a year- and my dog sleeps on my bed with me and knows when I’m overdone. – Rusty
I have always used sleep as a way to relieve stress since I was a small child. You could liken this to “freeze” in the fight, flight or freeze adrenal response. It’s harder to get sleep when you’re an adult though. – Jeannine
Real time off
Well after the past 4 years of first taking care of my dad at home until he passed away almost 2 years ago and then taking care of my mom with Alzheimer’s…my therapist suggested if I didn’t take this mere 3 days for just me, I won’t be able to continue at this pace. I really feel like I pushed myself to the edge. And instead of going over the edge I decided to listen to my doctors this time. For the very first time I have reserved a hotel on the beach for 3 days. Where I have instructed my family that during this time….I am not a wife, mother, daughter, caregiver, sister, friend, or anything else. I am disconnecting from my life for 3 glorious days by myself sitting on a beach while watching the waves! – Marianne
I make sure I go away completely by myself for a couple of weekends a year. I find some kind of conference I am interested in a place I would love to see and just go. I do not feel one bit guilty, because I come back refreshed and stronger to deal with life! – Susan
You can read all the responses on our Facebook page.
We asked the community if they’d modified their home in order to better accommodate the person they cared for.
The most common additions were:
One item I found very useful, in addition to the items others have listed here, is our Honeywell wireless doorbell purchased from Lowes. We attached the doorbell to mom’s bedrail and the speaker is across the house on our bedroom nightstand in case she needs us during the night. I can also bring the speaker outside with me when doing yard work (250 ft range). – Mike
We have the same thing and it’s a life saver. – Genie
If your person is small like my husband, you may consider getting a kid size wheelchair. It fits through those smaller doorways. – Pierrette
A note to homeowners: ADA requirements for wheelchair ramps are rules for public establishments. You do not need a 1:12 ratio in a private home. Our wheelchair vendors have said 1:9 ratio was just fine. That is what we have for our house and it has been entirely satisfactory. – Lee
Not big things but little things. Hand rail in the tub. Shower seat. ADA toilets. Reaching grabbers in every room. Guard rail on the bed with a yoga strap to roll over. That bed rail is the one I used when I was little. It is metal and super strong. – Alicia
Removed all rugs, built handicap ramp, installed railings in bathrooms, bought a swivel shower chair for the tub/shower, removed the door into the master bath for ease of entering, have hospital bed and bedside commode for nighttime use, electric recliner for ease of use…monitors in the great room and bedroom. – Deb
We have chain locks- up high on all doors since my son is a “wander/runner” with asd. We also have all cabinet doors with magnet locks and I can’t decorate for the holidays. – Danielle
We have installed hand rails in my Mom’s bathroom and shower to keep her safe. Bedside rails in her room. We also modified appliances when she was able to use them (she is sight impaired). We are still trying to figure out what to do with our stairs. We have a 4×4 at the top of the stairs and when Mom hits it with her walker, she knows to go around. Most of the time. Sometimes she just keeps pushing and banging against the barrier and I’m afraid she will topple over. My biggest fear is that she will fall down the stairs. – Kathy
Haven’t had the money to do much. We have a walk in shower, but she wont’ use it. Taller toilets. I had handrails installed on both sides of the stairs. I also have a video baby monitor in my moms room so if she gets up, I can see and hear her. She isn’t too mobile, so she comes down in the morning, then stays down until she goes to bed. – Julie
My family installed rails and put in a safe shower with no slip bottom. I have alzheimer locks and door alarms. recently added a driveway alarm to the door which I like better as the alarm rings at my bed if someone crosses the door and goes out the sliding glass door. – Cindy
We added rails to the front and back porches. We installed a handle bar on the rear door. All rugs were removed as well as the floor transition panels between each room. Also installed bathroom bars. Other minor changes done as well. – Sharma
Custom windows with tempered glass and special locks for my autistic teen who kept breaking the glass. – Karen
A nice ramp and deck in the back of my house (front yard is too small for a straight ramp), new doorknobs (more like handles) on her bedroom door and the bathroom door, and I removed all my pretty rugs from my hardwood floors. (Tripping hazard). Other things I can’t think of now. – Angela
While she was still in the ICU I had her mom get in touch with my wife’s uncle to have railings installed up both sides of each set of stairs. Also because she was a flight risk I hung bells on the bedroom door so that I would awaken if she tried to escape at night. – Andrea
I added a stair glide stair lift to take Daddy up and down the steps. Also railing for the shower and a shower seat. It was a slide chair….1/2 out of bath and 1/2 in, He sat and lifted his good leg over tub and I then lifted the bad one. He scooted over. Worked well. Sooooo much change in life when being a caregiver. – Mary
The VA came in and did an assessment. They put in ramps, stair lifts, hand held shower nozzles, shower seats and grab bars! We were so grateful, because my father in law really benefitted from the modifications! – Sharon
We set up ramps, chair lift, tub rails, adult height counters in both kitchen and bath. Remodeled complete basement with wide doorways and easy two and three way lighting including switches with remotes for easy lighting. – Linda
Adding on an accessible bathroom was cheaper than remodeling our master bath (which had already been completely gutted and remodeled already.) Its an option worth considering. An additional bathroom almost always adds value to your home. – Libbi
Handicapped height toilets. A new bathroom for him; toilet, sink, and a shower with a bench, hand held option for showering, and no doors or curtain. There is a drain in the middle of the floor. Easy for me to shower him and I don’t have to lift him in and out of the tub anymore. Ramps for front and back doors so that he can be more independent and there’s less worry of him falling. Half in ground pool so we can get him in and out more easily and safely. No throw rugs; they’re a trip hazard. Wider doorways for when he needs his wheelchair, which is every night and morning when his orthotics are not on. We also bought him an adjustable bed to help with reflux disease. – Ginnie
Installed wheelchair ramps, converted basement bathroom walk in shower by expanding the room to a roll in shower room, add’d a Acorn stair lift , mounted a chain above bed for lifting & adjusting self, hand rail and Auqa bath lift seat for main floor bath that was replaced with a hydrotherapy jetted tub, 2 shower/potty chairs. 2 push behind wheelchairs ( 1 for main floor 1 for basement) 2 electric recliner chairs 1 for basement 1 for main floor. a single electric bed for main floor living room and a queen size electric bed for basement bedroom, monitors, and handicap van. – Brenda
Outside the home too. Lots of cement walkways wide enough for wheelchairs, raised beds, keeping plants near to discourage wheelchair in dirt/mud. – Kathleen
Presently under remodeling…..it’s getting on my nerves but it has to be done. Widen doors, ramps, new walk in shower, remove carpets and replace with laminate wood. – Delisha
We gutted the main floor and widened hall, doors, opened kitchen, 5′ turn around in master bath with raised toilet and roll in shower, ramp in side entrance, chair lift to basement, eliminated any raise at deck door, other doors out, van conversion, these were the major things. – Sue
Initially yes. But then the old house became very impractical even with modifications so we had to move altogether to a much more care friendly home. Life is easier and more comfortable now. – Frances
Moved in Dec to home with a more open floor plan & thought everything was good. In Jan we took out carpet in mom’s bedroom & installed tile. Removed bathtub, toilet, & vanity in her bath & make walk in shower, handicapped toilet, new vanity & grab bars everywhere. Approximately $15k we hadn’t planned to spend. – Danette
We had to be moved to a bungalow because my son has Huntingtons disease. It has a wet room. No other modifications. As apart from bubble wrapping the whole contents of our home this dreadful disease doesn’t really ‘do modifications’ just danger with no solutions 🙁 We get by on a wing n a prayer x – Shelli
To view all the responses, visit our Facebook page.
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.
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
“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
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
We asked our community members what the best source of caregiver support they’ve found is. While we could all use more support, here’s what’s helpful.
I am the lone wolf taking care of her now. I feel just left to completely be in a silent world.can’t get out with the way things are being the sole caregiver so Facebook is a godsend. It sure gets lonely. – Renee
Facebook pages aren’t the same as human connection, but you might find some understanding on other caregiving pages. There are some that are private, and most I have found are under the sandwich generation title. – Chelly
A group on Facebook filled with like-minded couples all dealing with spinal cord injuries. It’s called Love Like This Life. Wonderful group. – Erin
I have found great support though 2 fb groups for SCI caregivers and spouses and another for FTT. – Kirsten
You can connect with other caregivers in our private Facebook groups.
Volunteer caregiving organizations
The Alzheimer’s Support Groups has a 24/7 helpline 800-272-3900. There may be Faith in Action or National Volunteer Caregiving Network respite programs in your area. – Helen
Home Health Care Agency…but I miss so much time from work when the nurses choose not to show or cant show. I dont have family or friends to help. My daughter or my other son they help here and there when I get to a point where I HAVE to have some time for myself. Surprised I still have a job. – Rhonda
Personal support. Just having someone to talk to, who can say with all understanding, “I get it. It’s hard, I know, but you will get through it” because they have been there. Having someone who can provide real, honest empathy instead of empty platitudes. – Debbie
You can always connect with other caregivers here as part of our community.
Our Hospice Nurse and Aids. My Aunties, Cousins and friends who share funnies with me on Facebook because they know I can’t get out too much. – Carla
Palliative care then hospice for my parents. – Deb
Hospice was a life saver. Their employees and volunteers1 – Julie
Family & friends
My husband has been helping me take care of my mom in our home for over 13 years. I recently completed my Master’s Degree and could not have juggled caregiving, work and school without his support. He is an amazing husband and the best son-in-law ever. – Kathy
My husband. We’ve been married 3.5 years. He is God’s blessing to me. – Jeannine
Right now my younger brother. He just recently took over so I could have a ‘me’ day in town. – Mary
My sole support for caring for my adult son with muscular dystrophy is my younger son and a couple friends. – Erika
Support is limited
We were caregivers for over twenty years and over time friends, family and others drifted away and we were left on a island with our loved one and each time we reached out for help from Agencies the door was slammed shut or we were told they could provide someone for two hours one time a month. Caregiver support is really a myth. – Jean
You can see all of the responses here.
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, Bob, Giselle, Harriet, Judith, 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?
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
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!
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.
Welcome to the world of caregiving.
It’ll be hard, but it’s worth it.
You will never ever regret being a caring caregiver. – Debra Taylor
It’s all about love
Remember to love unconditionally, when it’s a family member. – Mimi L
Don’t be afraid to ask for help. Take any and all offers – they eventually stop. – Narelle
The only advice is to reach out and ask your for help. If you don’t and it becomes a long term as it has with my family, people back away, be open and honest that you need help. – Maggie
Remember self care
Take good care of yourself too. Find time for yourself. It can be something as simple as reading a book. Never forget yourself. – Mimi L
Don’t forget yourself
It is important to maintain certain projects that gives one a since of identity. Why? Because so often as the journey continues it is easy to lose sight of who we are, or were before the all consuming responsibilities are upon us it is too easy to lose our sense of purpose. It is best too if these projects include some sort of creativity. Why? Because a wise man charged with running a school for children with disabilities once said to his staff that when doing such a job as caring for another, creative efforts provide the in breath and the caring effort is the resulting out breath. – Linda
Make decisions together
As a veteran caregiver of both mom with dementia and spouse with MS, patience patience patience. Breathe and try to understand their state of existence. Think through to solutions that work for everybody. Ask before you make decisions about their care. – Joanna L. Brandon
Sometimes you have to be forceful
Be proactive, especially where your parents are concerned. We’re taught and experience trains us to follow their lead and defer to their wishes, but there comes a point where everything they taught us comes majorly into play. It’s a role reversal and we chafe against it, but it must happen before a disaster dictates the when and where. – Kat Drennan
You can’t argue with ALZ
Caregivers have to adjust, adapt, and accommodate because you can’t teach, train, or tell. Momma was on her own strange journey. I could not go into her world, but I had to survive it in order to help her. – S
Here’s a tough situation quite a few caregivers find themselves in: being responsible for selling a home that’s not in great shape. What do you do when no one seems interested in buying and you can’t afford to keep it?
My sister and I inherited the house we grew up in after my mother’s passing. We are struggling to sell it.
The house needs some repairs and is in need of a renovation, but we can’t afford to do this. There’s a $9k mortgage.
It’s been listed at $50k, but hardly anyone is even looking at it. What can we do to sell the house?
If we can’t sell it, what can we do so it doesn’t damage our credit? I was told that if the house goes into foreclosure it will ruin our credit.
If the title is in the name of the estate, then it doesn’t affect your credit at all. If you put your names on the title, then it will. Sell it ‘as is’ for anything over the mortgage and realtor fees. I’m sorry you’re dealing with this. The loss of your parents and your childhood home must be difficult. The right family will come along, fix it up, and again make it a loved home with happy memories. Peace of mind is priceless. – Kathy C.
I was in a similar situation about 10 years back after the death of my brother. There was a higher mortgage than yours and it needed lots of repairs. I let it revert to the bank (just quit paying the mortgage) and they sold it at a sheriff’s auction. Funny thing is, the new owner got in touch with me and had me over to see the improvements he made. He’s a real nice guy and it’s comforting to know my brother’s home went to him. – Martha P.
Lower the price and it will sell. – Catherine D.
You may not want to make big financial decisions when you’re in grief. Give it a little time. – Kris M.
I’m sorry for your loss. I’m sure you have a lot of emotions going. Try to think of the house sale like a business. Sell it quickly and take what you get. Don’t worry about what you could get, since you can’t afford to make it ‘marketable.’ – David F.
What about donating it? Perhaps someplace like Habitat for Humanity will take over the mortgage and fix it up so someone can live there. – Mari D.
Is it your mortgage? Unless the mortgage is in your name what happens will have nothing to do with your credit. – Jack R.
If you’re in probate, be aware that you may need the probate judge to approve the price and buyer. This needs to be part of the listing. This adds time to closing and frequently results in a lower sales price. Probate judges are used to houses selling for somewhat less than they’re worth. – Jana D.
Not every upgrade or repair you make has to be expensive. – Cori C.
Are you listing with a realtor? Ask her to market it to investors who may be willing to do the work. If you’re not getting bites, you’re priced too high for the work that needs to be done. You have room to drop it. – Jennifer M.
If you just want to get rid of it, see what an auctioneer thinks it will bring. – Erica J.
Look into local real estate investor Facebook groups. Join and post the ad there. Check out FSBO (for sale by owner) groups. – Patrick N.
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.
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
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.
So many of us have promised our parents that we’d never put them in a home.
And then, one day, we do.
Putting a loved one in residential care is an incredibly difficult decision for anyone. It’s even harder when doing so breaks a promise we’ve made.
Here’s what our community has to say about it.
I do care for my invalid Mother at home, but promises or not, there are instances where one can no longer care for a parent; so choose a nursing home carefully, visit very often. – Phyllis M.
What if you get sick? Or disabled? Of course you provide better care than other people would but it is important to make plans for what to do in case of emergency. Caregivers develop illnesses and have accidents just like non-cargivers. – Jeananne E.
I tried as hard as I could not to put my dad into a nursing home. I had to in the end for the last months of his life because I couldn’t lift him anymore. He died not forgiving me for doing that. No one else helped me care for him all those years. Now I care for my mum and I am doing a great job. However she knows that I will only put her in a home when I can no longer care for her re my health or my inability to lift her etc. I will sleep well when she goes to God because I know I have done all I could for her and dad. Those who do nothing are the first to throw stone. They are the ones who live their lives only unto themselves. – Diann P.
My moms care is taking its toll on me, physically, emotionally, spiritually. It’s difficult to say the least. – GG W.
When you keep anyone you are caring for in your home it engulfs you. I have had the greatest caretakers in for Mom. We are truly blessed for that. It’s my time now to live. I have a world to conquer before my last breathe is taken. Address the problems and run it like a business but remember you can only run hard for a few years. Then it’s time to make this decision. Best of luck! – Diane B.
Many families have no choice. We should not shame people who are at the end of their ability to caregive. And sometimes when people get to this point the care at home is awful. I have seen this many times. I understand care in nursing homes and assisted living facilities may not be good but sometimes there is just “The end” to the ability to caregive especially if the care recipient is violent or doesn’t sleep. – Jeananne E.
I think keeping a loved one at home after decades of illness is not good for the loved one or caregivers. It sets everyone up for injury, undue chronic stress and most caregivers are physically incapable of the job. The whole family should matter not just the sick person.
Keeping the individual at home sets everyone up for extreme social isolation cutting them off from services and finding friends. Nothing like group depression to compound issues. If you realize the family member has deteriorated beyond the point you can safely care for them, bite the bullet.
That said, I believe most families are deterred by what they see as high costs and that once the family member runs out of money, he’ll be evicted and back at home. – Angela M.
I promised that for both of my parents.
But I did have to put my dad into a nursing home after years of caring for him at home because he was becoming too violent.
It’s a horrible feeling when you have to physically restrain your father because he is trying to kill you. I dealt with his verbal and emotional abuse for years but on two occasions he tried to end my life due to the demented state he was in.
I still care for my mom in my home. – Lorne S.
My MIL will cuss you, hit you, and throw things at you! She would stab us if we didn’t hide all the knives. – Vickie B.
Sometimes we must make decisions that are difficult due to our own health or situation. Do the very best that you can with love. I do care for my mother at home, but understand if one cannot. Only one who has been there can understand. – Phyllis M.
I used to visit the “Old Folks Home” on my way home from elementary school. I promised my Mom she would never have to go there. It was like the dog pound. I quit working and took care of her, by myself, until she passed at age 94. Her dementia took a toll on me that will last all my life. – Cherie H.
I know I can’t change a diaper of a 230 lb woman for the next 10 years while working and raising my daughter. – Jennifer G.
It’s not abandonment
“Abandoning” is the key word here.
When your parent(s) go to live at assisted-living or nursing home, visit/call them often. Then, you aren’t abandoning them. – Kristi W.
My mom is in assisted living 3 miles away. She has her own room. I take her to all of her doctor and dentist appointments plus we have her over every week for a break from her home, to go to church with us, and have a family meal. I also buy all her clothing and personal needs items plus clip her fingernails and bring her to get haircut. She won’t let the aids cut her fingernails. She wants me to do it. She is able to live out her life there even in hospice. Since she is so close we will be able to be there all the time anyway should that time come. – Jeannine G.
You can not risk your health way of living or sanity to take care of a parent. If they were in their right frame of mind they wouldn’t want you to. Take care of yourself and visit often. Take them out on outings if their health allows. – Renea L.
It’s a pretty common problem: the person you’re caring for is refusing to bathe.
Here’s advice from other caregivers on how to keep everyone clean, safe, and happy.
What’s normal to them
We have to remember that more than likely “back in the day” your father did not bathe except for perhaps once a week for church/synagogue time. Encouraging cleanliness is not easy, but perhaps sponge baths are the best hope for now. – Marie N.
The feel of the water
[People] with sensory processing disorder struggle greatly with baths and showers because they don’t like the feel of the water. It’s not uncommon for anyone of any age to struggle with SPD, especially the elderly. – LaKea H.
Making them comfortable
Identify something special to them — might be a food treat, an outing, a special visitor.
For my mom it was having a fire in the fireplace even when it was warm outside. She loved to sit in front of it and so it was great to start the fire and then she knew when she got out that she could sit and warm in front of it, I bought those 4 hour logs.
Warmth is very important — remember how you would warm the room for a baby’s bath. We have to remember that it is a bath they likely remember not a shower.
- For women lavender soap is soothing. Or their favorite perfume from years past.
- Perhaps get some Old Spice for older men and put some out in a bowl to the smell is in the warm room. Many older men used to use Old Spice.
- Never spray the water on their head or face.
- Let them do as much as they can.
- I agree with letting them start with washing their hands or face with a cloth.
- Having a secure and easy to use bench to sit on makes it less scary.
- Wear something you can get wet. Have plenty of towels and mat because water will be everywhere.
Make this difficult time a sweetly speaking quiet time. We caregivers have to acknowledge bathing is often difficult but not a battle of wits or strength. A shower can be weekly and bed or sponge baths in between. Just making sure the personal areas are really cleaned to avoid rashes and breakouts and skin breakdown. Finally, the person might do it easier for someone else. If so let the other person do it. Even if you have to pay $20 a week to an aide it will be worth it. Some aides will come in just to do a bath. – Jeananne E.
It is a difficult situation, but once or twice of having the bathroom nice and toasty warm with the bathwater and all grooming necessities in place, it was easy to take my Dad by the hand andassist him. He did always feel much better afterwards and it soon grew (in that stage) to be my responsibility of getting him in there.
Sincere encouragement and patience are key in hopefully gaining the needed level of cooperation. Depending on what meds your patient or loved ones are under the influence of can be a determining factor as well. Valerian Root (a natural supplement) helped to relax my Dad. Don’t use it unless consulted with Dr. if other meds are administered. Best of luck and love to all under these circumstances. I know it is not easy. – Vicky H.
Ease your way in
Don’t say bath. To the elderly it’s allot of work.
Just let’s wash your hands and go from there. That’s what I did with my Mother while she was walking around. She’s in a hospital bed now and we use the same words. We never say bath. She says I just took one.
So we now say we’re going to wash your hands. And then go into full bath mode. After its over we say doesn’t that feel great. She agrees and takes a nap. – Diane L.B.
Use bed bath products & wipes
In my case I used bed bath products. Most can be found at local pharmacy stores. Wipes, no rinse cleaners, shampoo, buzzed off hair all make things easier. Baby wipes for sensitive skin are good.
It’s a struggle
Oh how I feel Your pain! My Dad was the hardest. He would just cry cause he didn’t think it was right for me to give him a bath. We struggled but got it done. My Mom on the other hand is well something else, but we manage. They even admit they feel better after.
Adult disposable wipes are good, too, when the struggle is real. – Pat S.
It is literally IMPOSSIBLE to get my MIL to bathe! She will cuss you, hit you, try to bite you, and cry, like you are trying to kill her or something. Nightmare! – Vickie B.
Some days I lay on my bed and cry after doing it because I know it’s a physical demand from her and it’s also one for me! – Kellye H.
My Mom wouldn’t bathe. For 9 months she refused! I have hospice come in now and they give her a sponge bath 1-2 times a week! She’s mean — curses, hits, and throws her cane or even her walker at me! I try to help her…but all I get is cursed at or hit. I just walk away! It’s hard. – KJ
The lives of caregivers rarely rely on the calendar, they go on the schedule of the person we’re caring for!
Still, the beginning of a new year is a time for reflection. Here’s what our community is planning on doing this year…and what we’re hoping others will do to help us.
What are we hoping to do in 2017?
Find one week to do what I want to do when I want to do it
Take my caree out to more fun places
Help my caree to be stronger and more independent
Continue to just be…and be thankful for each day
Have more patience
Find time to be creative and make my art
Create and maintain healthy boundaries
Make peace with my caree’s illness
Be more active now that I am no longer a caregiver
What do we hope for all caregivers in 2017?
Lower insurance copays and lower medication costs
Better hospital discharge planning
Refundable tax credits for caregivers, like child care credits
Support from Medicaid and Medicare for in-home care
Family caregiver training
Regular respite resources covered by insurance
Social Security contributions for time spent as a caregiver
Additional in-home care aid hours covered by insurance
More volunteer respite resources
Tax deductions for mileage to and from medical appointments
Meals delivered for disabled and ill carees who are not elderly
Assistance with household cleaning and maintenance
Most people associate PTSD with veterans of war, but you don’t have to be a soldier to experience this condition.
The NIMH defines PTSD as ‘a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.’ When people experience a traumatic event, it’s common to be impacted by it with a range of emotions. People with PTSD don’t recover from this initial trauma. It doesn’t have to be triggered by a ‘dangerous’ event; many people experience PTSD after the death of a loved one or another emotionally challenging experience.
Risk factors for PTSD will sound familiar to family caregivers. They include:
- Living through dangerous events and traumas
- Seeing another person hurt, or seeing a dead body
- Feeling horror, helplessness, or extreme fear
- Having little or no social support after the event
- Dealing with extra stress after the event, such as loss of a loved one, pain and injury, or loss of a job or home
You can learn about the symptoms and diagnosis of PTSD on the NIMH website.
If you think you may have PTSD, talk to your family doctor. If you aren’t comfortable seeking treatment, there are still some first steps you can take. Reducing stress through exercise and seeking out comforting situations can help you feel more secure. Get support from your friends and family, especially by letting them know what situations trigger your symptoms. Try to be realistic about what you can do each day, break up projects into small tasks, and accept that you can’t do everything. PTSD doesn’t go away overnight, but it can get better.
Here’s what some of our veteran caregivers have to say about PTSD:
After caring for my husband, for 20 years, I am afraid to answer my phone, open mail, or attend doctor appointments, fearing more bad news. I just want to hide. – Lynn R.
If you sleep with one ear open, you startle easily. Loss of sleep triggered by this startle reflex, will lead to ptsd. People who fail to understand my situation don’t believe me, but thankfully medical professionals do. – Angela M.
After 27 years caring for my very vulnerable son, I can tell you that it is indeed PTSD. For a mother, the fear of something happening to your child is much worse than anything that could happen to yourself. I have an anxiety disorder and have suffered from depression. You live in terror every time you hire a new respite worker, and only trust yourself as a caregiver. Your decisions carry so much weight that some days you feel they will crush you. – Dawn D.
Being part of caring for my MIL definitely has caused PTSD. Its a complete nightmare, and now I am scared of her! She talks about cutting people and watching them bleed! I know its the dementia, but she scares the hell out of me! I have nightmares about all of it! – Vickie B.
Anecdotally, caregivers who take care of a family member who is or has been abusive are more likely to talk about suffering from caregiver PTSD.
I’m the only child in my 50’s. My parents are near 90, refuse all outside care, cashed in their life insurance policy with not enough for burial. Now there is over 12k in medical bills and they won’t call a lawyer or approve forms for Medicaid. They say no one is putting them in a home. Mom has fallen numerous times and in nursing care and Dad signs her out. To stay out of care she shifts blame onto anyone including, and most of all, me. Agencies won’t help. Doctors quit the case. AOA said it’s one of the most difficult cases they have encountered. – Jacqueline A.
I wish my mom would understand that no one wants to help her because she is a mean old spiteful monster who has alienated EVERY one in the family to the point that they don’t even want to call to talk to her anymore. But she blames me for it! – David R.
I used to think that I would ignore my stepfather who abused me, but when it came down to it…I had to treat him better than me. – Jennifer K.
I can relate to caregiver PTSD from taking care of my mother that never took care of me & Granny that raised me! – Chrissy G.
What should you do if you feel you have caregiver PTSD?
The reason you have PTSD is because you love and you care. The key to reducing anxiety is to get out of your own head. Watch your self talk. Be kind to your mind, it does not know the difference between perceived danger and real danger….live in the moment! – Dawn D.
If you are feeling overwhelmed, you may, very well, benefit from talking with a therapist or counselor. I have learned to take time, for myself, once in a while, to spend a few hours, with friends, or even just go for a ride. I feel guilty, for even smiling, sometimes, but we have to take care of ourselves, and find ways to keep our spirits uplifted, while we care for others. For what it’s worth, I would advise you to, whenever you can, do something special, for yourself, even if it is a meal out, a movie, or just something you like. Try to interact, in a positive way, with others, and rejoin the human race. You are entitled to happiness, and, your [loved one] may even want that for you, as well. – Lynn R.
Some comments have been edited slightly for clarity and grammar.
The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.
Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.
Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.
One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.
So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.
I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.
Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.
Here’s what our community members have to say
The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.
One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.
I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.
I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.
I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.
There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.
I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.
I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.
Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.
I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.
I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.
After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.
Some comments have been edited for clarity and/or grammar.
Do you feel like you’re doing the best you can, all the time?
No matter how hard I try, it gets to me sometimes. Love alone isn’t enough for me to not lose my cool. Maybe it should be. Maybe it is for you. (is it?). But the pressure mounts…the bills are piling up, insurance is denying pre-approved claims, the laundry, the dishes, meals to be cooked, lunches to be packed, the mortgage is late. My boss is losing patience with how distracted I am and how I’m always late.
Sometimes I lose my cool. I yell. Or I just get that tone in my voice that shows how annoyed I am. And then I feel so guilty.
So guilty and so tired. I’m just so tired all the time.
It helps to hear how other caregivers feel this way, too. That maybe it’s not great, not okay, but understandable for me to not be as good as I want to be all the time.
“you’re doing the best you can, under difficult circumstances. Try not to be so hard on yourself, okay?” Denise M. G.
“forgive yourself, for not being able to do the impossible and for your very normal feelings. Those are feelings of frustration and they do not lessen the love you have for your parents…I had assumed I had to caregive alone, but then I found that there had been people I could call on for help all along. I should have spoken up.” – Nancy L.
“The hard truth is you can only do as much as you can do. It is terribly hard for us to accept that we cant fix it or do more more more. The best and most that we can do for those we love and care for is to love them and do what we can within reasonable parameters. You are giving them all that you can and you love them you have to accept that.” – Barbara F.
“We all lose it from time to time. Whoever says they don’t probably doesn’t even know they did. Yes, Forgive yourself and move on. Longterm Caregiving is the hardest thing ever to do.” Diane L.B.
“Forgive yourself…..it happens to all of us more than we would like others to know! Being tired and stressed gets to the best of us and few among us are saints…we all do the best we can and just keep going!” – Micki T.
How do you keep your cool? And how do you forgive yourself when you lose it?
Self care — it’s easier said than done.
We’re always being told we should take better care of ourselves, but we rarely get the help we need to actually do that. Here’s how caregivers feel when they’re told they should put their oxygen mask on first:
Sometimes it feels like another criticism thrown at us. Yes, self-care. How dreamy that vision is. How easy that is for others to tell us that is what we need when we are already acutely aware of it. What I really think I would love to have and what I really think would be the most “self care” mindset…is having or knowing that someone ELSE is going to take care of me for a few minutes, even maybe take care of a task, or take one of my responsibilities off my hands for a little while. – Cathy S.F.
We all know we need to take care of ourselves. This is not news to us as caregivers yet everyone who offers this advice to us can’t seem to offer how to do that when the choice we have is “take care of me or take care of our loved one”. I’m going to choose my loved one every time. I think most of us are in the position that if it isn’t ME providing the necessary care, it’s NO ONE providing it and that is just not an option for our loved ones who require total care etc. We do our best to care for ourselves but it’s literally impossible to take time away from our loved one to do so…It’s not noble or martyrdom, it’s just reality, a fact of our lives. So we do our best each day, listen to the unhelpful “advice” from people who will never “get it” until they are in the same position, and continue to find moments in our busy days for our little and glorious bits of self care (while still taking the best care possible of our loved ones 24/7). – Kelly D.
Taking care of myself is looking for the best options and making sure my loved one is safe so I can sleep at night. Trusting others to help and care while looking for what other options are out there to help. The closest family is 10 hours away, so no family meetings or help. I don’t have the answers but I will continue to fight and learn. I am not trying to be noble, I just want what is best so I can sleep. – Julie D.
The suggestions are simply not doable for a lot of us – especially when you ARE the only living family member left, when you are already suffering from a debilitating illness yourself, when you can’t even take a walk around the block because there is no one to sit with your bedridden family member who cannot help themself and constantly has emergencies, etc. Way to put more unrealistic pressure on us that we must be doing it all wrong. It is what it is! – Lemia L.
We know that not everyone can sneak away to a keyboard in the middle of a day, much less on a holiday. Yet we also know that connecting back with your community can be an important boost to your spirit.
So on special days like this, members of our team – Adrienne and Paul – will be checking in on our group chat specially focused for this Holiday. The live chat is a regular feature of our site. For Thanksgiving 2015, we’ve added a new chat room called the “Thanksgiving Check-In.” We want all our caregivers to have an opportunity to give thanks in a new way.. but supporting each other; by telling our own stories and by acknowledging the unique stories of others.
To access the chat, just log in the TheCaregiverSpace.org and click into the side bar on the right to pick the chatroom.
If you want to leave the chat window open in the morning, and come back when the pies are cooling you can maximize the chat to it’s own window. The graphic shows you how.
Whether you can only break away for just a second, or you have a longer span to relax in between dinner courses, share part of your day with us.
Log in to TheCaregiverSpace.org and join us in a rolling, all day chat. Thursday, November 26th, 2015 – Thanksgiving Day in the USA… Take a minute just to say “Hello” or hang out to support your fellow caregivers.
America needs more caregivers for our rapidly aging population, but we don’t provide them with a living wage or adequate workplace protections. Low wages lead to high turnover and poorly trained staff. Stressed out workers come to work sick because they have no health insurance or sick days. Workers are less reliable because they can’t afford reliable transportation or childcare.
Many caregivers make less than $10 an hour — meaning they’re impoverished, even with a full-time job.
Learn more about Fair Pay for Quality Care on the North Carolina Justice Center. Keep reading to hear from family and professional caregivers who are struggling to make ends meet.
I was an in home caregiver for 4.5 years. While always living frugally I always had to have a roommate. My income was not consistent due to the eventual passing of clients. It would take some time before I could acquire a new client. In the interim my check would drop dramatically and I would struggle to survive. How much is competent and compassionate care for your fragile loved ones worth? Minimum wage? I think it’s worth much more. – Judy H.
I’ve never understood why caregivers make as much as someone who works fast food. I’m taking care of a life. – Donella B.
I am a professional CG and I work 60 hours a week and I spend 10-12 hours a week in traffic. People think I am a bad mom for working so much because I do not get to spend much time with my son. The reality is that I wish I would spend more time with him but this job does not pay a decent wage so I can afford to work only 40 hours a week. People assume that because this is a job that requires skills and continue education, lot of knowledge because of the nature of the people we work with (vulnerable adults) we make lots of $$$, the true is most caregivers work very hard but they are at the limit of poverty, they are sleep deprived and their health is poor. – Andreea S.
My son is a home healthcare worker and a good one. He says that his company has to hire the worse people because of the low pay. – Marty C.
My mother pays a fortune to live in a memory care alf but the caretakers themselves don’t seem to make much money, some work two jobs unless they are nurses or administrators. – Gay R.
Family caregivers should be paid. Informal caregiving is the largest part of long term care. Other countries pay informal caregivers a living wage. It can be done. – Jeananne E.
It makes no sense to me that I should be in danger of losing my home when my IS passes, or starving to death or letting my own health go to hell because Ive had to give up any income I had in order to take care of him. Family caregivers deserve to be paid, same as homecare providers. We lose everything over the course of our loved one’s illness. – Lona S.
Financially, it is devastating, not only at the time of being a caregiver, but will catastrophically affect the caregiver financially for the remainder of their life. Prospective employers don’t care about the reason for the gap in employment history, nor do they consider the skills, knowledge, or work ethics involved. The IRS gives tax credits on so many things, but not on the most important thing… caring for life. – Dawn K.
We need to get louder and stop feeling like ‘oh, it’s out of love.’ Of course it is, but do we need to lose everything out of love, too? -Cinnamin M.
We’re in it together
I am currently using a health care agency that sends a home health aide for my mother. I have left my job to care for my mother, but needed additional help. The problem is that these agencies charge $20/hr, which is high. However, the aide only gets paid $9.00/hr. These agencies are big business that are capitalizing on the elderly. Pay these caregivers more and make a little less for the business. I regard these jobs as very important. We are entrusting them to care for the people that mean the most to us. – Josephine F.
I’ve seen in the past [families] who can’t afford to pay much and only hire someone for a few hours and then leave them home alone the rest of the time. The whole thing is a mess. – Tracy T.
I’m a caregiver for my husband and CNA money isn’t that great. I can make more as waitress. – Debbie T.
Why would anyone NOT want to pay (handsomely) those that care for the ones that we love most? – Cherie R.
Social Security, Medicare, and Medicaid help keep seniors out of poverty and in their communities. Sign this Caring Across Generations petition to urge your elected officials to support these programs.
Some responses have been edited. You can view the originals here.
Many people put their lives on hold when they first step into a caregiver role. That’s fine for short-term caregiving, but putting your life on hold for years or decades means a life unlived.
Finding someone that fits into the lifestyle is difficult but not impossible. I found mine, just took 4 yrs lol we are still strong and loving one another 8 yrs. He is a home body too (perfect as they get). – Donna Marie B.
I had tried dating a few men during the course of taking care of my Mom and they were either too needy, jealous, or did not understand. Deciding not to date eliminated dealing with any of that and just focus on her and what she needed. So it’s not impossible, but finding that one person who is willing and able to not be 1st but maybe a close 2nd and understanding of your caregiving job is like finding a pearl. They are very rare. If you have found or find that person hold onto them. – Michelle R.
I tried [to date]. I take care of my mom, and she gets so upset thinking that I will meet someone and leave her that she ends up in the hospital if I go on a date. I’m not exaggerating. So, I don’t date anymore. I’ve never married or had children, never had a LTR, and I have to let go of those dreams. My mom doesn’t really like me to go out except to grocery shop or to doctors. – NC L.
I just found mine. It’s only been a little over a month, but he is so understanding about my situation. – JoZena G.
I’ve been a caregiver for my Mom for about 10 years now, and have had zero dates in that time. Besides not being able to get out much, I’m afraid I might also slip back into being almost painfully shy around women. – Ed R.
I am a live-in caregiver for a lady and have no time or means to meet any body. It’s a 24/7 job. – Karen P.
I’m the youngest of four and at 47 have given up hope of meeting anyone again, either. I was in an abusive relationship, was always accused of caring for others more than her. She’s a chronic alcoholic who when sober (rarely) was fit and able to look after herself and hold down a job. Meanwhile, I was caring for my niece who is now 36 and has a brain injury, my Dad who passed away about a month ago and I am about to officially take over care of my Mum who totally dropped her bundle once my Dad took a turn for the worse in May and she is not able to take care of his affairs or her own. Somewhere amongst that I lost myself. My siblings won’t speak to my niece or my Mum, who tells me she needs me and I am better off alone after the last one. I kinda don’t blame her for that. I have multiple physical disabilities and PTSD due to her actions. I feel so alone and wish there was somebody out there who would care for me and my ‘baggage’ as my ex called them. I call them my family. My fault is I love and care too deeply and get hurt. Some people are so cruel. Something I will never understand as long as I live. I care because to the core of my being it was what I was bred to do. It’d take one very special person to lure me away from doing what I do out of love. – Beth C.
I just never tried to find a husband as I’m to busy with taking care of my two elderly parents suffering from Dementia. They always acknowledged that my being single was the reason I was/am a 24/7 caregiver to them. But it would break my heart if I felt my parents wouldn’t support me finding happiness. – Janet S.
I sacrificed my college choice to help take care of my Father when he suffered strokes. He passed in ’03. Then I vowed to always care for my Mother who passed 2 years ago. Almost 10 years after my Dad. I sacrificed more than just college in the process, though. I didn’t realize it at the time, but I was falling into a comfortable trap of not getting out to meet people and got used to not dating. I had squashed that need for so long that I let loose after my Mom died. I still would prefer to be out instead of staying home but its not as bad. Now I’m 44 years old with no kids or husband to speak of. Yes, true, my choices. But given the circumstances of being an only child, they were choices I had to make a certain way. I would never do anything different either. I’m not complaining, don’t get me wrong, because in a bittersweet way I have my life back, but it’s without my best friend in the entire world, my confidant, my soul mate — My Mom. And it just so happens that now that I do have my life back I have no one to share it with or no little ones to pass the amazing lessons onto that my amazing Mother taught me. – Michelle R.
Even for people who are in a committed relationship, maintaining a relationship takes work and time. Caregiving brings some couples closer and tears others apart.
It has definitely brought my husband and I closer – a new dimension to our relationship; first his mom lived with us and now, we have been caring for my mom under hospice for the last year and a half. Precious moments! – Lemia L.
Trying to take care of two parents with no siblings, turned down for medical assistance, has taken a huge toll on my relationship. – Jacqueline A.
When my mom was diagnosed with ALS, my husband (of 14 years) said as long as I didn’t forget about him, he didn’t have a problem with me taking care of her on the weekends. It only lasted for 2 months, as she passed away very soon after diagnosis. My dad was a mess, so I helped him as much as I could, being an hour away. 14 months later, he asked for a separation. Which worked out, as a year after we separated, my dad was diagnosed with FTL dementia. – Deborah C.
I cannot begin to tell you the strain that categorizing has put on my marriage. I would like to just be able to go out with my husband without having to use subterfuge. Our lives…our privacy…are gone. It is what it is. We are trying very hard, but it is indeed the hardest thing that has ever hit our marriage.- Beth S.
Are you ready to give dating a shot? Here are Allison’s tips for dating as a caregiver.
My mother has recently gone from taking care of my great uncle to handling the paperwork and selling his house. He was meticulous and spartan, but we found his wife’s perfume, his grandfather’s pistol (an antique more than a weapon), and other small sentimental items tucked away in his bedroom.
Most people have more personal items than he did. It took months for us to sort through my other great uncle’s things (some of which are still in boxes in my mother’s basement, nearly 15 years later). Bob wrote about the process of going through and finding new homes for Annie’s things and it got quite a reaction.
Going through people’s things after they’ve died or become completely incapacitated can be a very emotional process. Here’s what our community had to say:
Very unexpected things become extraordinarily precious. The surprising nature of grief takes getting used to. – Susan G.
It has been 6 months since my husband passed and I still cannot bring myself to go through his things. – Susan B.
[It took] 7 years [to go through belongings] here. My mom collected so much and she had items from other deceased relatives. Finally going through it all. Started with 92 boxes. Down to 20ish. One day at a time. – Diane D.
It’s been 19 months yesterday since my husband passed and two tears since my daughter passed. Still can’t go thru the clothes and personal belongings. I have donated his bed, wheelchair and numerous other things to charity. – Marie D.
My son passed 4 years ago, I still have all his belongings, except his wheelchair and hospital bed, that was donated to someone who needs it. – Trish M.
I have what I call the ‘Abby closet’ for my daughter. Moving everything into there was difficult, but necessary. I open when I need to, but it’s still pretty painful. Still have all of her meds, and even the backpack that hung on her wheelchair still has the belongings in it. Have no idea when I will go through all of it, not anytime soon. It’s not even been two months, so I’m sure that’s normal. – Carly L.
We all deal with a passing in different ways…personal to ourselves. Everybody directly involved or not should allow one another to take their own time with dealing with a death. Rushing or being forced to part with special belongings may cause irreparable personal damage. We are all different. We all need to show one another some empathy and wait until all persons concerned are ready to part with belongings. If that day does not come… then we need to accept that that is how it is going to be. – Janette C.
I could give away most of my husband’s clothes except his favorite t-shirts and hats. His other things are still waiting for me to let them all go. Final goodbye to everything that was connected to him is the most difficult. Getting there very slowly. – Elaine W.
One year since my favorite uncle passed and I still have his stuff…can’t bear to let it go. – Kathleen S.
My house is full if boxes of my mom’s stuff. I even have a storage unit i pay for every month. And she is still alive. She had to move to board and care. I had to keep working to take care of her. In the meantime I feel like I am living in a storage unit. – Karen G.
I lost my mom 6 months ago, I am having trouble bringing myself to go through her stuff, everytime I try I feel as if I’m throwing her away. – Rebecca S.
Couldn’t bear the loss of a parent more so a spouse. I still keep their things and place as they were to this day. Feel like i’d lose them completely if i disposed or hid any of their things… – Renato T.
A source of comfort
I think that whatever comforts you is ok. If your husband’s things stay where they are forever, it’s ok. It’s about what you need, not what anyone else says or thinks. – NC L.
It has been 5 months since my husband passed…I still wrap myself in some of his shirts for comfort. – Linda H.
I lost my husband in January and I still have to keep his clothes in the closet so I can put my face in there, smell and feel his clothes. – Susan K.
I had quilts made for my brother and me made out of my father’s clothes. – Linda S.
Some ideas I found to be quite therapeutic. I had a quilt made out of my husband’s clothing. Another idea is to make jewelry out of the buttons. – Justine C.
I think what makes it harder, is a family member, who has not been around to help with the caregiving, decides they want and deserve to have whatever they want, out of the personal belongings of the deceased. – Leslie J.
When my mom passed away all H— broke loose — after spending all my time going through the rest of a storage container and boxing up her things for auction (she lived with me her last 4 years), some of “my family” decides they don’t want anything to do with her personal things — they didn’t know mom at all. Although not how should be, her things meant the world to her (and also her family meant alot to her, too) — hopefully soon everyone will get their share and they can move on with their lives. – Sherry L.
Some people want to get everything over with quickly and forget. They think that will be easier. – NC. L.
If you donate the items she “lives on” thru the person using it. Clothing can be a “gift” to a homeless shelter, salvation army, etc. – Elaine D.
Finding your own way
Whatever is in your heart is how long it will take. Be kind to yourself. The heartache does not go away. It does not get easier. You just gain coping skills to accept and move on as they would want you to. In your own time! – Diane D.
October 10th was World Hospice Day. We asked our community how hospice helped them and their families.
This is what they had to say:
Thank You! In a world, fearful of death and dying, hospice caregivers, understand the journey in a way that other healthcare professionals don’t. I am deeply humbled and extremely grateful for all that they do not only for our sick and dying loved ones, but all that they do for us, the family caregivers. If it weren’t for the love, compassion ,wisdom and tenderness of my mother’s hospice team, I would have given up a long time ago! – A. Angeline H.
Hospice was a Godsend to my family…they helped me survive! Thank you to all the special people who work in hospice care. – Karen D.
The hospice aides we had when my grandmother was sick from Cancer where nothing short of angels sent to help my family through the hardest thing we’ve ever been through. They saw us all at our lowest, darkest times and helped us make it to the other side. Thanks to all hospice workers out there, you are truly the angels who walk amongst us. – Melissa T.
Hospice has been a true gift to my family and many other families we know. Special people to help us all through the transitions of life. – Theresa A.
Hospice is a miracle! We had hospice only for 1 afternoon for my Mom and it truly was a blessing for her and for our family. After I retire I would love to do some volunteer hours to give back what I gained. – Ann B.
Hospice has helped my family though all my grandparents deaths. The one that hit me the most was my grandfather and they were tremendous! I got to know one of the hospice angels when my grandmother passed she became one of my grandma’s friend before she passed. Thank you so much to all those that are a part of hospice. – Caitlin C.
Hospice was by my family’s side when my mother died from cancer. They were blessings from above. Thank you for doing what you do everyday to make someone’s life more peaceful and more comfortable as they spend their last days on earth. Thank you for being there for the families. Teresa B.
My mother passed away in 2013 and was under hospice care for 11 months. I am not sure what my husband and I would have done without hospice. – Erin. D.
Love and prayers for all Hospice caregivers! You were truly our families Angels as we cared for my dear mother as she fought cancer and entered Glory. I never dreamed I’d be in that situation and have the privilege of caring for her until her last breath. Thank you! – Brenda B.
Hospice was a blessing in our family when we need it most. – Angelica L.
It takes a special kind of a nurse to do hospice care…Thank you…I will forever be grateful to those nurses who took care of my mom. – Isela C.
The hospice care nurses were such a blessing to our family when my Mother-in-Law grew terminally ill. When she passed Dec. 7th last year, I felt as if I had not only lost her, but our hospice care family. They become a part of us during those trying times. – Lisa D.
The wonderful nurses and volunteers at Hospice were there when Momma and our family needed them. Their care allowed us to give her the only thing she wanted. To be with family the last few weeks.
Thank you. Thank you for helping me keep that last promise. – Dodie G.
Hospice services have saved our family many times in many States. My grandson has been a hospice patient at home for over 3 years. The doctors, nurses, chaplains, are compassionate and selfless. Volunteers and donations are vital. – Pam D.
Thank you to the hospice people that guided our family through the death of my husband. They were a Godsend. – Linda G.
Thank you to all the hospice caregivers who have helped us through the pain and apprehension as we watched our loved ones going “home”. I can never thank you enough for the kindness and care that you have shown not only for my Mom but for us as we stood watch over her. – Peg W.
Hospice was such a blessing for our family. They truly are angels ????. Without them our unbearable journey would have been so much worse and i love that they follow the family for 18 months after a loved one’s death. – Dawn B.
Two times, my dear Mom and Dad, and I will never be able to thank Hospice enough. Caring and compassion when my family needed it most! – Karen M.
At first I was so upset and so reluctant to have them. I could not accept that my Mom was passing. I took her to the hospital the first time I had them and dropped them. She just got so sick and she wanted to go to the hospital so I took her. We had had hospice for about a month that time but they was so good and helpful. But the second time after she came back home I had them back and they sure was a blessing. My Mom passed away in July of this year of Colon Cancer. Her last couple of days was at the hospice house and it was so nice. They gave her the most beautiful send off. When she passed they put this beautiful quilt on her and they had her fixed so pretty and they let us stay with her as long as we wanted. When they carried her out they played a song of our choice it was so beautiful. The hospice house was beautiful and the workers was all so nice and caring. We had family coming in to visit with us and Mom at 2 am and they never said a word. When my Mom passed they was 35 people there with us. It was all so beautiful. I never could have made it that beautiful for everyone here at my house. Im so glad that I decided to make her last days be there. I will never forget it. – Ann E.
Thank you to those who choose to be hospice caregivers. I was very humbled when my uncle and mother-in-law were cared for by such compassionate teams. So grateful. – Jane P.
I am humbled to be a part of the Hospice family. Hospice is about living every moment to the fullest. – Yolanda R.
Hospice workers were absolutely great helping me through the last days of my Mom and my husband. They have complete compassion for the family. They all deserve a halo. – Lou B.
I don’t know how we would have gotten through my Daddy’s last few months without Hospice. It’s been 21 years since Daddy passed. Hospice was there whenever needed anything. These people are truly angels. – Liddie T.
Hospice helped me with the death of my wife. There are wonderful people who volunteer to be there day after day, seeing nothing but death, but make dying easier. They deserve all the praise we can give. – Marty C.
They are my heroes. They took incredible care of my dad in his final days. – Debbie B.
You can read more messages about hospice care on our Facebook page.
So many of us have grandparents who have already passed. We each find different ways to honor their memories.
What traditions does your family have to remember your grandparents?
My grandparents were so in love. They married at 18 and were together for the rest of their lives. They’ve been gone for six years now, but my whole family still gets together every year to toast their anniversary. They’re the reason we’re all here and they were such an incredible example for all of us. – Nicole R.
I light a candle at church for my grandmother every week. – Michael D.
Before my grandfather passed I sat down and did an oral history with him. We spent weeks on it, sitting around the kitchen table talking. I learned so much about him. I edited it and we had books printed for our whole family. My sister went through all the family albums, scanned and labelled the best photos, and added them into the stories. The books are lovely. But the thing I cherish the most is the tapes. Listening to his voice is like having him here with me again. – Doris W.
We talk about our grandparents all the time. It’s like they’re still here with us. They were such warm people. They made us who we are. – Barbara D.
My grandparents died before my kids were born, but I always give them presents “from their grandparents” on their birthdays and Christmas. Each year I have them make their grandparents birthday cards and I tell them stories about them. – Deanna J.
My grandfather was a hero in WWII. When I was in high school I made a children’s book about him. Now I read it to my son as a bedtime story. – Bernadette G.
I sleep with a quilt my grandmother made me before I was born. It means she’s always here with me. – Annie K.
Every recipe I make is from my grandmother’s cookbook. – Susan E.
I found the letters my grandparents wrote to each other while they were dating. Sometimes I’ll sit with a cup of tea and read them. – Jennifer P.
My grandparents loved animals. I volunteer at an animal shelter in their honor. – Mara H.
We have a mass in honor of my grandparents each year for their birthdays. – David R.
My family has vacationed at the same spot on Fripp Island every year. My grandparents went there on their honeymoon and loved it. Now it’s tradition. – Vita J.
Every time I go fishing with my son and his cousins, I think of my grandfather. He’s the one who always took me fishing and it was what brought us together. – George M.
My husband is disabled and requires more assistance than some care receivers. More assistance means more requests. I’ve been his caregiver for two years and, as the months passed, realized I was being interrupted constantly. When I was doing laundry, or preparing food, or writing at the computer, he would call me. I stopped what I was doing and helped him.
All of his requests were justified. Still, I had to learn how to work with snippets of time. Since my husband couldn’t change his health care needs, I had to change and adapt. Although my solutions were simple, they have been helpful. Here are my tips for working with snippets of time.
Have a routine. A daily routine provides structure for you and your loved one. Keep in mind that you can modify your routine if it isn’t working. My husband’s daily routine begins with stretching exercises for his legs, a necessary task for health and wellness.
Plan together. Your loved one may have many time-saving ideas. Asking for input helps your loved one retain some control over a life that may seem out of control. Because my husband is a retired physician I always seek his input. We plan the day together.
Keep your promises. When my husband calls, I try to finish what I’m doing, something that isn’t always possible. I tell him, “I’ll be there in ____ minutes.” Sometimes it is two minutes, sometimes five, sometimes more. What’s important is that my husband knows I will keep my promise.
Make menus. I don’t have time to plan weekly menus, so I plan meals for three days. In fact, I’ve learned to speed shop for groceries. Often I start a recipe one day and finish it the next. For example, I cook pasta ahead of time, drizzle it with olive oil to prevent clumping, and refrigerate until needed.
Build “Me Time” into the day. I set aside a half hour for reading, or watching birds come to the backyard feeders, or emailing family members. These brief breaks re-charge me for hours. Without “Me Time” I would be a grumpy caregiver. My husband understands my need for this time and is respectful of it.
Practice Self-Care. When he was discharged from rehab, my husband was advised to join a health club and exercise on a special bike to strengthen his legs. I drive him there in our wheelchair van. While he is using the bike, I walk a mile on a treadmill behind him. In addition to being physically active, I get regular medical and dental check-ups.
Constant requests come with the caregiving territory. Frustrating as these requests may be, we can’t allow them to make us angry or impatient. We can learn to accomplish our tasks in snippets of time, try different methods, and work more efficiently. All of these things are possible. And remember, life itself is only a snippet of time.
We recently asked our community members what’s your best advice for someone who’s currently caring for a loved on that’s dying? Here’s what you had to say.
Bobbi Carducci: Be with your loved one every moment you can. Having been at the side of my mother and years later, my father-in-law, I had the opportunity to hold them as they passed. My mother saw three angels without any wings waiting for her. Rodger had a dream that God told him his job here was done. I believe them both. As hard as it is, being with someone you love and care for as they leave this earth is a precious gift.
Linda D: Let them talk, and just listen.
Elizabeth B: Listen to them when they say they are ready. Help them prepare their way.
Rick Lauber: Enjoy what time you have left with your loved one by visiting. Ask any unanswered questions so as to not have any regrets. Respect that person’s final wishes (read and understand the Will). Make plans and decisions with other family members about a parent’s forthcoming death. Keep a senior as comfortable as possible and maintain his/her best quality of life. Expect to feel anticipatory grief (expecting the loss of your loved one) and take whatever time you need to heal (grieving is a personal process and each one of us copes differently). Find a healthy means to manage your own increased sadness and stress that you will often feel at this time.
Connie R: My husband passed away nine weeks ago while in hospice. We kept a normal routine for both our sakes. I encouraged those who knew him to stop in, cried when he cried and I was just there. Each person is unique – you’ll know what to do.
Christy P: Keep them as comfortable as possible, encourage laughter, and make sure they feel well-loved and preserve as much of their dignity as possible. That’s really about all you CAN do.
Sue P: Allow them to talk about dying.
Donna Thompson: I think one tricky aspect of caring for a dying person is balancing the ‘heavy’ conversations with the light ones. People who are dying will want to discuss their death and the meaning of their lives, but not all the time. They will want to live in the moment and then reflect on the past. I think it’s really important to look for signs of a dying loved one’s comfort zone in the moment and take their lead. In a palliative situation, the caregiver is the orchestra and a dying loved one is the conductor.
Janie B: Make the journey beautiful. Play music. Cook favorite foods – the smells speak to their memories of family and of love. Light candles and talk. Fill the room with life even in the end. You must be part of the journey.
Becky T: There is no one size fits all. At the end my husband could not hear. All you can do is the best you can with what you know at the time. Most of all be kind to yourself.
Corrine C: Live in the moment try not look too far ahead. Worry steals the joy in your life. Be there to share the time given to you and them.
Every year over 500 children in the US are murdered by their parents.
In fact, that number is a low estimate. Other organizations say over 1,500 children died of abuse or neglect in 2012. 80% of murdered children are under the age of 7. Half were beaten to death. Murdering their own children is one of two crimes that women commit as frequently as men.
In the US, children who are too young to go to school are murdered by their parents more often than by anyone else.
Of course, most children who are abused or neglected survive. Nearly 1 in 3 children have been physically abused, while 1 in 5 have been sexually abused, and 1 in 10 suffer criminal neglect (CDC). Nearly 1 in 10 witness family violence (Safe Horizon). Half of the men who abuse their spouse also abuse their children. In cases when only one parent is abusive, the other parent will often permit the abuse or refuse to believe it. Half of homeless youth are running from abusive situations, many because of sexual abuse.
Children who experienced multiple instances of abuse have an average life expectancy that’s 20 years shorter than children who were not abused.
Some parents continue to abuse their children into adulthood, while others only abuse them when they are young or for a certain period of time. Other parents leave their children in the care of relatives and re-emerge years later. Or raise their children in loving homes, only to disown them for coming out as gay, trans, or marrying outside of their religion.
That leaves millions of adult children to grapple with the decision of whether or not they should provide support to their abusive or estranged parents when they become ill or elderly.
One study of 1,000 caregivers found that 19% had been abused as children and 9% had been neglected. Caregivers of abusive parents were more likely to experience signs of clinical depression.
Some people make peace with their abusive parents, but that doesn’t mean there will ever be a healthy relationship between them. As Laura B. pointed out, many of “the abusers don’t feel guilt…[they] feel the world has cheated them and they are owed and no one has cheated them more than their own children.”
Providing care to an abusive parent could be a beautiful opportunity to build a new relationship…or it could mean putting yourself back into an abusive relationship. The potential psychological cost of attempting to care for an abuser is high. Those who decide to care for an abusive parent will need to be very aware of their boundaries and needs in order to make it through unscathed. Many abusive parents suffer from untreated mental illness and substance abuse — issues that make abuse easier to come to terms with, but suggest children should stay away until there has been adequate treatment.
Survivors who decide to distance themselves from their abusers may face judgement from relatives and friends, who often minimize the abuse or insist that family ties overcome all things — even with parents who’ve raped, beaten, and starved their children. This becomes especially complicated when only one child was abused. People fault women for staying with abusive husbands and condemn them for cutting ties with abusive parents. At least states with filial responsibility laws exempt children of parents who abused or abandoned them.
After reading The Debt: When terrible, abusive parents come crawling back, what do their grown children owe them? our community had a strong response. A number of people opened up about their relationship with their parents, the abuse they faced, and how they decided what level of care (if any) to provide.
We don’t owe them anything but forgiveness. – Rene L.
My father was a massive manipulator to keep his secret life of a pedophile away from my Mom during their 50 year marriage. I don’t believe my Mom knew but by the time all this was disclosed, she had Alzheimer’s & no longer knew me, their only child. Her last lucid comment was that she didn’t want to be in the same nursing home or buried with him. I could not have him around my children anymore. He should have been in prison but I found a facility about 90 miles away that accepted him. I went every two months, met with staff & spent 15 minutes with him. I made sure he had personal items. I would recover in a couple of weeks. I had his body donated to science, with the cremains never returned. Each situation is different. I did what I had to do for my comfort level, to honor both my Mom’s and my children’s wishes & maintain my sanity. Anyone, that has to care for their abuser, don’t allow others to guilt you into doing what is uncomfortable for you. I lost family & inheritance but the secret stopped with me & for me, that is priceless. – Lynne K-D.
Parents don’t get a free pass to treat you horribly just because they are your kin. If they refuse to respect boundaries and continually make your life miserable, I say, move on. At some point, your self preservation and your immediate family’s welfare has to matter to you. – Denise G.
It is not about being bitter and angry, but deciding to not be caught up in their drama and manipulation. My son would be the one to have to suffer the most if I had to take care of them. They take your soul and stomp to pieces any beautiful about you. Why would I expose my child to such people? That would be abusing my child by proxy. – Joanna B.
Mom’s been dead three and a half years. Haven’t missed her yet. Estranged for nine years, keeping my children away from her, I went back to care for her after her lung cancer diagnosis. Boundaries, written by Cloud and Townsend, was my life saver. She hated that I stood my ground. God knows my pain. I did the best I could with what I had to work with. – Dianne E.
I had a narcissistic father who was a big shot in the city when he worked, Only my mom and I knew how he really was. Outsiders who didn’t have to live with him thought he was the greatest guy on earth. I was an idiot, I promised I would never put him in a home. I took care of him to the bitter end. And believe me, the abuse was never ending. If I had to do it again I wouldn’t. All I have is the satisfaction of keeping my promise of taking care of both my Alzheimered parents in their own home. – Hawk B.
Both of my parents passed away with in the last 2 years I did not attend the funerals and I have not shed 1 tear… when you are not believed about being raped by your sibling for 6 yrs and they live with him there last days and left me out of the will you betcha there is no love lost here. – Brenda P.
My mom favors the others but that didn’t make me love her any less..we became close when she became ill..I love her because she is my mom. – Lotomai T.
Being related doesn’t give anyone the right to abuse you, walk on you, threaten you and then expect you to put up with more and play kissy. Forgive, yes. forget…no. – Lillian F.
I recently had to “cut off” my own abusive mother because it was just to hard and to much work for me. Why do so many people, including myself until recently, feel like it’s okay to let someone treat them bad simply because they are family. I’m 37 and have tried for the longest to have a good relationship with my other when it has finally come to a point where I cannot do it anymore, nor should I have to just because. – Tanya E.
I cut off contact my mother when I left home because I had to save myself. – Jan R.
I tried so hard to [care for my parents] because I am a Christian. Even when my father said I was a mistake and that he hated me…I made sure his basic needs were met and that he was safe. I pray he asked forgiveness before he died. I had to set up a hedge of protection around my Mom, my children and myself from the evil person he was. – Lynne D.
When either of your parents abuse you mentally or physically from your early years they don’t deserve your care – Nancy M.
Just because your parents raised you doesn’t mean you have to give up your life to take care of them. You have you in life and if nobody else understands that God does. – Laura H.
I didn’t have the best parents but I did the right thing and also what the Bible said. I honored them for giving me life and forgave them for they did the best they could with what they knew at the time. That is what love is all about. Forgiveness is a soul cleanser. – Martha R.
You do for your parents out of love and concern for their well being. When situations arise that the become angry and verbally anusive then it I’d time, not matter what age to make the decision. It is your sanity that is at stake. You cannot allow them to belittle you. You must stand. We honor them. But when they do not honor you. Your life is just as important. You must honor yourself. You must allow them to have what they want. You do not have to agree. It is to much work doing you. Life is precious. Live it for you. – Julia W.
Some posts have been lightly edited for clarity. You can read the original posts here.
Want to share your experience? You can add your comment below.
For more information on child abuse:
Adult survivors continuing relationships with abusive family
Why people discount the (adult) child and defend the abuser
Why do parents murder their children?
When parents are too toxic to tolerate
Child Help: Child abuse statistics
Child Welfare Information Gateway: Child abuse & neglect statistics
When parents kill
Experts say some children are singled out for abuse
Struggling with an abusive aging parent
Why do people sexually use or abuse children?
Why do adults fail to protect children from sexual abuse or exploitation?
A risk in caring for abusive parents
The undeserving parent
Poisonous parents: Should you cut them off?
Sometimes caregiving has wild ups and downs, but other caregivers face endless days that are the same.
I know people mean well, but asking if someone with an incurable disease is feeling better wears on my nerves. Sometimes I find myself wanting to let people know that if they find a cure they’ll be reading about it in the New York Times. I’m not the only one who’s torn between appreciation that they care enough to ask and frustration that they just don’t get it.
I’m tired of that question along with “Has he had any improvement ?” You don’t get better from advanced P.D.! – Sandra T.
Sandra, I am with you. Especially from family member who never visit or offer any assistance. I am tempted to ask, “Why”? – Doris M.
How do you respond to family and friends who regularly ask for updates on someone’s condition when their condition is stable…and not going to get any better?
I thank them for asking. – Viki G.
I usually say “he’s stable” and “we’re taking it one day at a time”. – Malki S.
I welcome the question. It tells me that you care, about me and my child. I thank them for asking and move on. Since it is my adult child that I’m caring for these days and he has been just diagnosed with a rare and incurable liver disease, lots of people are asking lots of questions. – Dianne S.
I always thank them for asking. I, personally, never tire of someone caring enough to ask about my loved ones who are chronically ill. – Holly V.
I always thank them for asking and say that he’s doing well today; some ups and downs, but well today. It’s really all I can offer and I think it’s all people want to hear. – Carolyn V.
I feel like most people forget. Or because you’re not in the hospital everything is fine. I don’t want to depress anyone or anyone to think I’m depressing so I just say we’re doing well. – Marissa A.
I say she is doing as well as can be expected and leave it at that. – Sandy D.
I’m glad when people care enough to ask how my Dad’s doing and I tell him who asked about him. – Laura C.
I just say “she’s okay” what else can I say? she’s the same as she has been. – Vicki H.
I say Dad is fine, the same and stable…But I sure could use a cherry pie! – Lynn V.
I just say we’re taking it day by day. We rejoice in the good days and pray through the bad days. – Lisa-Marie G.
Oh he’s ok thanks for asking me, you can stop by if you want – Darlene A.
My default answer about my mom is “She’s ok.” Sometimes I might throw in a “Some days are better than others.” – Ana M.
I have a strict Confidentiality and never respond. If it is a Close relative I refer question to primary care MD. – Rachel C.
Truth is hard to explain..and most people don’t understand either. “He’s doing okay” is all I manage to say. – Veena M.
I say she is holding her own, really no worse no better..and also say to me that is a good thing…because she really won’t get any better and I try to not let people who ask is she doing any better questions kinda blow with the wind. – Donna G.
I put the needle on the record…needle on the record…needle in the record… – Gina Z.