Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.
But as Cathy put it so perfectly:
It isn’t a competition regarding when we started caregiving, every version of it is hard.
I asked our community members how old they were when they became a caregiver. Here’s what they had to say.
My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara
If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric
I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria
I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole
I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen
I was born into it. – Connie
At birth. – Skyler
I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy
I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda
From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca
I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne
My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy
My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta
The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine
My grandmother was ill…it was summer…what else needs to be said??? – Gwen
I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia
I was 16 and still in high school. – Tracy
I became a caregiver at 17. Now I’m 34. – Rachelle
I took care of mental challenged children. They had been abused and their parents on drugs. – Jo
I started taking care of my mother at 18. I became a nurse when I was 27. – Lois
I was 18 when I became a caregiver for my grandfather. – Margie
I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia
I was 19 when I started as a health care aid. – Mara
I started at 19 years old. I’m 22 now. – Bri
I started at 19, as a professional caregiver. – Beth
I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz
I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane
I was 19. Now I have been doing it for about 20 years. – Kama
My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela
I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany
My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle
I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane
I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda
I was 21. I’m 57 now and still caregiving. – Michelle
I was 22 when my husband had a TBI. – Mel
I was in my 20s. I’m still going strong in my very late 50s. – Deborah
I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie
At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly
Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn
At 24 I took care of my mom for a year before she passed away. – Fatin
My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz
Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny
I became a caregiver at 25. I’m 41 now. – Shannon
I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey
I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria
It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti
I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie
I was 27. I have a 19 year old with Spina Bifida. – Jackie
At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey
When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly
I became a caregiver at 29, when my son was born disabled. – Terri
I was a caregiver at 29 and again at 43. – Jennifer
At 30 I became my parent’s caregiver. – Kim
I will be starting my 26th year on May 27th. – John
I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️ She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi
Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle
I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral
At 33 I started working in a hospice house. – Karen
I was 34. It was the end of everything. The beginning of everything. – Charles
I was 35. It has been 5 years since my husband’s accident. – Stephanie
I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina
I was 37. Momma had Alzheimer’s. – Mary
I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie
My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie
My son had his TBI when he was 12. He’s 25 now. – Tina
My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy
I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy
Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne
I was 42 when my mom had a stroke. – Robin
I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine
I became a caregiver at 45. I never saw it coming. – Louis
I was 45. My daughter was 12. It takes the two of us to handle it. – Kim
I was 46 years old when I started taking care of my 52 year old husband. – Cindy
I was 46 when I started being a caregiver. – Roberta
It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie
I became a caregiver at 47. My husband is sick. – Lorraine
I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude
My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy
I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie
My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan
I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela
I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne
I became a caregiver at 54…I will be 64 next week. – Annette
I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda
I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula
We took care of my mom after my dad died. We were all over 55. – Julie
It became full-time from 56-64. – Christine
My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen
My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly
You can read all of the responses on our Facebook page.
Sometimes people don’t know 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
Having a parent or grandparent in a nursing home can be incredibly difficult, especially when so many of us have promised we’d keep them at home forever. So often residential care hardly feels like it reduces the amount of time we spend caregiving, with all the driving back and forth, paperwork, laundry, and endless errands.
And then there’s the day we visit mom and she has bruises on her. One of the hardest parts of dementia is that she can’t tell me what happened.
Before you panic and yank her out of the nursing home, read this:
Take it with a grain of salt
Her explanation, that is. People with dementia often mix up the details. Did the aide hit her or did she hit the aide? Remember that you can’t take her story at face value. I’m not saying to ignore her story, but look for some evidence before you make any accusations. Asking her what happened is just one step in figuring out what to do.
Was there a procedure involved?
Routine blood draws, physical therapy, and other minor medical procedures can leave bruising. Check with the nursing staff to find out what medical professionals she’s seen recently and what they’ve done that might cause bruising.
Check her medications
Some medications increase susceptibility for bruising, like blood thinners and heart disease medications. Even pain killers, antidepressants, and asthma medications can cause people to bruise easily. Some supplements, like fish oil and ginkgo, act as blood thinners and can lead to bruising.
Other medications can cause dizziness, leading to bumps and falls.
Check in with the pharmacist to see if this might be the explanation and if there’s any cause for concern.
Liver problems and other conditions can also lead to bruising easily. If nursing home staff aren’t sure where the bruising is coming from, make sure she’s checked over for health problems that might be causing it.
Bruising can also be a sign of vision or balance problems. Talk to her doctor and get her vision checked. Make sure there are grab bars installed in the nursing home and that she’s using a walker or cane if she needs to.
It might be benign
Older people tend to have delicate skin and bruise easily. This is especially true for women. The loss of fat under the skin increases someone’s risk for bruising, as does past sun damage and a host of other factors.
If you’ve ever hoisted an elderly person out of bed when they weren’t being cooperative, you can understand that it’s possible to bruise someone accidentally in the normal course of affairs, even when you’re being careful. It often doesn’t take much force to cause bruising in someone with delicate skin and frail blood vessels.
Talk to the nursing home staff to see if there have been any problems. Has she been resisting being helped with mobility? Has she been bumping into things? Has she been getting the supervision and support she requires?
It may be time to get her physical therapy to help her move around more safely or an investigation into what might be causing her to be uncooperative when getting in and out of bed.
Not only is it easier for elderly people to bruise, they take much longer to heal. A bruise that might heal in two weeks on a young person may still be there months later for someone who’s elderly. This can lead to occasional bruises adding up — and making it seem like a major cause for concern.
It might not be benign
Some dementia patients are placed in nursing care because they’re aggressive toward caregivers — they may be violent toward other patients, too.
Watch how the staff treat other patients to see if a certain staff member is handling them roughly. Make sure they’re lifting patients correctly. Improper lifting is dangerous to both the caregiver and the recipient!
Unfortunately, figuring out if this is a case of elder abuse or not can become tricky with dementia. The signs of abuse we look for — bruises, social withdrawal, confusion, depression, hygiene issues, and weight loss — are all relatively common among elderly dementia patients.
If the staff seem poorly trained or are constantly turning over, that’s a sign that things aren’t well run behind the scenes.
If you suspect abuse, the National Center on Elder Abuse can guide you through what to do.
Finding a safe nursing home
Even in the best nursing homes, where patients are safe and supervised, patients will get bruises occasionally. There will even be occasional bumps and falls.
We can’t protect our parents from everything — and I’ve certainly gotten my share of bruises from bumps I don’t remember. It happens.
But if you’re seeing a pattern of bruising or are noticing other causes for concern, look into it. The more time you spend in the nursing home with her, the better off you’ll both be.
If nothing seems amiss, bruising easily may be part of the new normal. Make sure staff are extra gentle with her. Icing and elevating bruises right away can help reduce marks. Long sleeves and long pants may help give the skin a little extra protection.
Thankfully, as long as bruising isn’t a sign of abuse or an underlying condition, it won’t cause long-term damage.
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!
It’s a question I’m asked all the time by family caregivers:
Can I get paid to be a family caregiver?
It’s usually accompanied by qualifiers:
- I’m not trying to be greedy, but I had to quit my job to take care of my mom.
- My husband isn’t comfortable having a stranger take care of him.
- My insurance will pay for someone to take care of my disabled sister and I’m a trained medical assistant – can’t they just pay me?
Family caregivers often spend a large portion of their income – not to mention their savings – to care for their loved ones. You might even be taking unpaid leave or feel forced to quit your job to fulfill your family obligations. Family caregivers who quit their jobs lose out not only on a paycheck, but on retirement plans, pension plans, and social security benefits. Family caregivers are saving insurance companies and government agencies billions of dollars by providing care – shouldn’t there be a way to get paid something?
Unfortunately, there are only a few programs that will pay family caregivers. We know how hard you work and how much you deserve financial support, but most of the time it is not possible to be paid to be a family caregiver. Because health care differs so much, I can’t provide specific information. However, I can point you in the right direction to find some answers.
Government programs to pay caregivers
Each state and county provides different services for the Administration on Aging. Some programs will provide stipends, reimburse caregivers for supplies, offer training, and provide respite. Paying for Senior Care maintains a list of Area Agencies on Aging and Disability Resource Centers that’s searchable by state and county.
Guardians of children
Guardians of disabled children who are not their biological or adopted children can become subsidized guardians. This allows relatives to receive financial help to care for children and keep them out of foster care.
Structured Family Caregiving
In some states, family caregivers of Medicaid recipients can be paid through the Structured Family Caregiving program. In order to participate, you must be referred by your local Agency on Aging, which is typically run at the county level. The program is run by Caregiver Homes. Caregiver Homes is available in Connecticut, Massachusetts, Rhode Island, Ohio, and Indiana, and will be in other states soon.
- The person receiving care must be eligible for Medicaid and deficient in at least 3 of 5 activities of daily living: dressing, bathing, grooming, using the toilet, eating, walking, or getting in and out of bed.
- Caregivers and patients must live together.
- Stipends typically range between $900 and $1,200 a month, depending on the level of care.
- You will be assigned a registered nurse and a care manager who will meet with the caregiver and patient to develop a care plan and will provide ongoing coaching, training, and other support.
Medicaid varies by state, so contact your local Medicaid office to find out if you may qualify. If your Medicaid office isn’t responsive, the National Resource Center for Participant-Directed Services can help connect you to the state programs that allow the patient to decide how to spend their health care money – sometimes including the option to pay a family member for care.
Unfortunately, Medicare does not pay for in-home care or adult day services.
Private sources of support for family caregivers
Disease or condition specific organizations
Some private organizations will provide stipends or grants to support caregivers. Organizations who offer this each have their own requirements, so contact a social worker to find out more.
Sometimes parents will recognize the financial hardship their care causes family members and will pay their family members to care for them. This may take the form of an adjustment in the amount of inheritance or some other creative reimbursement. Sometimes relatives will pool their money to pay the primary family caregiver. It’s wise to write a caregiver contract and check with an elder care benefits planner or elder law attorney if you decide to go this route, as it can have implications on Medicaid eligibility, taxes, and inheritance.
There’s also the possibility that family members could share the cost of caregiving, so it’s not all falling on one person.
It’s important to make sure family members are in agreement. Finances can bring out the worst in families, especially during stressful times. You may consider family mediation services – the National Academy of Elder Law Attorneys can help you if you’re caring for an aging relative.
Long-term care insurance
Certain types of long-term care insurance will pay for in-home assistance, including family caregivers. These types of policies are relatively unusual and most exclude people who live in the same household from being paid. These types of plans tend to be significantly more expensive. Talk to your insurance agent to learn more.
What if none of these programs will help you?
Even if you can’t get paid to serve as a family caregiver, you may be eligible for programs that will cover adult day services, in-home support, or other ways to ease the financial burden.
Department of Welfare
Caregivers may qualify for other programs, including cash assistance, food subsidies, and medical assistance. Check with your state welfare office for more information.
Resources for those over 55
The National Council on Aging can help you find out if your loved one is eligible for financial assistance for medication, housing costs, and health care. Get started with their Benefits Checkup.
Social service organizations
There are numerous organizations that provide grants or emergency assistance to families. Many of these are specific to location, employment history, and condition. Organizations will provide grants for rent, mortgages, and utilities. Other organizations provide support for food, medication, supplies, and grants for home modifications to meet the needs of people with disabilities. Each agency has its own eligibility requirements, so you will need to search online by specific needs, contact a local social worker, or discuss it with hospital staff.
If you’re caring for a relative and provide for more than half of their basic living expenses, you may be able to claim them as a dependent on your taxes. You may also be able to deduct their medical expenses, even if you can’t claim them as dependents. Visit the IRS website or call the IRS help-line at 800-829-1040. You can also talk to an accountant about these options.
Working while serving as a caregiver
Some companies are more caregiver-friendly than others. Your company may allow you to work part-time, have flexible hours, work from home, or provide additional time off. Or they may not.
Under the Family and Medical Leave Act, eligible workers are entitled to 12 weeks of unpaid leave per year. Some companies even have employee assistance programs. Check your employee handbook to see if your company has set policies. Go over the options with your supervisor and HR before you make any big decisions.
Getting help is possible
It isn’t easy and it isn’t enough, but help is out there. Find out where other caregivers have found help and how it turned out.
Do you use one of these programs? Have you tried to enroll? Is there another program we should know about? Please let us know in the comments.
This article was originally published in September 2014. It’s been updated several times in order to reflect changes to available caregiver support programs.
So many caregiving guides make it sound like there’s plenty of help to be had, if only caregivers would ask.
We know that’s not quite how it works.
Yes, some caregivers don’t ask for help and your chances of success improve if you ask the right way, but it’s a fact that lots of our requests for help will fall on deaf ears.
Or the ears of people who really would love to help, but are too busy that day. Some people just won’t help.
Here’s the story of real caregivers who’ve gotten help, how they got it, and how it worked out.
It’s worth it to keep asking and keep searching.
I have been wanting tangible help for years. I have tried to get VA caregiver respite and they say it is a long process, so try the county. I contacted my county, but unless you are broke and nearly homeless you don’t qualify — and if the receiver can handle most ADLs, forget it.
That leaves either pay $30 an hour or hire a kid. When what we need is some help with chores and companionship, $30 an hour is best saved for other things.
In 10 years the only respite I have found was through Lifespan Respite. They offered $1000 worth of time in a voucher, but that included drive time for the caregiver and the only women who could come was an hour away. We lost two hours worth of her service, but she was great.
But that was 3 years ago. I have yet to find a way to get a break. As the caregiver, I knew I would need help. Friends are great, but I wanted a helping hand from someone who could think in advance about what I might like — because a caregiver knows.
Yesterday I had help — but it became a major annoyance. Three guys all at once felt like it was a football party not a recovery room.
I am parent and primary caregiver to my 26 year old disabled son. He was on the waiting list in our state of PA and after completing his schooling at 21, then was pulled from the waiting list and after a few months or so was approved for caregiving services in the home.
We went through 2 agencies and about 10 caregivers before coming to the conclusion that it wasn’t working for us. The caregivers were either poor in attendance, were no-shows, or actually fell asleep while on the job. We could not depend on them.
Now, I was approved back in summer 2016 to be paid to caregiver for my son. I went through the application process, job interview, training and am now an employee of a caregiver agency.
I really needed the financial support so this worked out. The only drawback is that I never receive respite. I only have my middle son to fill in for me when I need to leave the home to run errands.
The rest of extended family and father to my son has basically “checked out” of the situation. So it goes.
My son, Rob, has seizure disorder, Epilepsy and is both mentally and physically challenged. He falls into the Autism Spectrum and is officially diagnosed as developmentally delayed. He is homebound. His first seizure was at age 2 1/2. His physical body slowly deteriorated over time. He use to be able to walk and attend school and social functions until his late teenage years when his legs gave out and he couldn’t walk and eventually could not sit up.
He is mostly a happy young man with a great smile and a laugh that brightens up the room.
When I ask for help, it’s asking for driving assistance to either a haircut or the dentist. If help is not available, I just rearrange my schedule. So far, I haven’t need ‘personal’ assistance in the form of toileting or grooming or walking-type help…but it’s coming.
So, I have no ‘helpless’ experiences other than those I create in my head. I’m fortunate, as my husband’s Atypical Parkinsonism is not acute enough to warrant daily assistance.
My husband had a buddy who was a former coworker who would take him for coffee each weekday morning and sometimes on the weekends, too. He was retired and probably felt obligated to do something for him.
After my husband was released from the hospital he had outpatient and home visiting therapists and nursing. He performed well for the therapists, but didn’t follow through on his own. He had two times that he was sent to care centers near the end of 2015 and almost used his 100 days covered by Medicare because of silent aspiration pneumonia.
The county supplied a senior companion. He worked out great, he had been a CNA, knew about electronics and got a DVD and earphones set up for my husband. They got along great. My husband was against the idea of a senior companion at first, but once he met the guy he came around. The company he was working through went out of business. Before we could arrange for him to come back through a different company my husband was back in the hospital and passed away.
I asked for help and didn’t get any more times than I can get into.
People tell you to let them know what you need, but come up with all sorts of excuses when you ask for their help. No one truly understands your situation unless they’ve experienced it themselves.
My favorite way to find help is by hiring someone whose personality is a caregiver personality but who is not a CNA/Medical type caregiver. The people that I have hired this way are now friends of mine and helped my Dad get through some very tough times with his Lewy Body Dementia.
Joy Meason Intriago
I do not get any help at all in being caregiver for my dad who is 78.
Because he retired from the railroad and does get enough benefits to
support himself. However those benefits do not provide any help for me, his caregiver.
Just recently my son qualified for an IFS Waiver, which allows me to get paid to be his caregiver. However the maximum hours I get are 37 hours a month.
Some responses have been edited for grammar and clarity.
When we first become caregivers or when there’s a new emergency, we go into super hero mode. You know what I mean: you do it all, without stopping, at the same time.
Nothing can stop you, until you can’t keep it up. It’s unsustainable. You can only suck it up and forge ahead for so long before you’ll burn out.
You’re burning out
The problem is, even super heroes aren’t super heroes around the clock, day in and day out.
Taking care of someone else all the time without a break leads to anger, resentment, and sheer exhaustion. You can’t think clearly. You snap at people. You can’t connect with people. You’re so anxious you can’t sleep. You’re miserable.
You know what they need. Do you know what you need?
Take a minute to ask yourself: What are you missing? What do you have? The more specific the better.
Most of us have a few coping methods we cling to, often from childhood. They may or may not be right for the challenges caregiving presents. Caregiving is often presenting new challenges, all on top of each other. You’ll need a whole arsenal of coping methods to make it through in one piece.
Think about what you really need. What specific things are getting to you the most?
Of the things that are getting you down, which ones could possibly be changed? Even a little?
Fight decision fatigue
Caregivers get stuck with a lot of responsibility. So many of the choices we face have no good answer, leading to immense guilt and anxiety.
Decision fatigue is a real thing, and it’s exhausting. Do yourself a favor and eliminate any decisions that don’t matter. Patterns, habits, and rituals are great for this.
- Grab a few things from your closet that all match each other and fit you. Ignore the rest of your clothes and rotate these.
- Eat the same things every week. Stick with one simple grocery list. If you can, get them delivered automatically…or from a neighbor who’s going to the store anyway.
- Schedule appointments at the same times as much as possible.
- Schedule times to make phone calls, do paperwork, and other chores.
The less you have to think about chores and things that don’t really matter, the more time you can think about the things that do.
Get back control
Sure, we’re making decisions all day, but it doesn’t feel like we’re in control at all, does it?
What makes your life feel out of control? What can you do to feel like you’re back at the steering wheel?
Is someone demanding help constantly when they could really wait an hour? Set up ground rules for requests.
Is the unknowing of a lack of diagnosis driving you to your wits end? Turn to meditation or faith to learn to accept the unknown.
Has your life become a random series of chores? Set up a routine and stick with it as much as possible. Everyone works better when they’re following a routine.
Remember that caregiving is a choice. Perhaps it seems outlandish to imagine being able to walk away, but you could. What would it take? What would make you do it? Every moment you’re taking care of someone else is a moment you’re choosing to do so. You’re doing it because you want to be here, even if it’s hard.
Get in touch with you
You’re a human. Humans make mistakes, say the wrong things, and let people down. You’re going to lose your patience. That’s okay. We all do. Remember that. Other people probably have unrealistic expectations of what you should do. Let them, but remember there are limits to what you can do. You’re already going above and beyond.
Find a way to remember how proud you are of yourself. Maybe it’s journaling, a gratitude jar, or just thinking about it as you brush your teeth. A daily moment of reflection doesn’t have to be involved to be meaningful.
As a human, you still need to have an identity besides being a caregiver. Even if you barely have time for the other pieces of yourself, make that tiny bit of time. People who only take care of other people 100% of the time end up bitter, angry, and empty. This is your life, too.
You’re spending a lot of time thinking about someone else’s physical needs. Lots of caregivers neglect their own — and then die before the person they’re caring for, or become so ill they need a caregiver themselves. Stay in touch with your body, too. Go for a walk, even if it’s short. Don’t skip meals. There are lots of little tricks to stay healthy, even when things are hectic. Other caregivers are happy to share them with you.
You’ve cut out a lot of things in your life to be a caregiver. Surely there’s something caregiving related you can cut back on to make some time for yourself.
When you’re in super hero mode, everything that’s non-essential falls away. Friends and other relationships tend to get cut.
It’s fine to neglect your friends for a little bit, but in the long term it has huge consequences — for your physical and mental health.
Maybe you don’t have time to go out, but there’s always time for a quick text. Things like Facebook can help you stay involved, even if you don’t see someone regularly. It’s also a great way to let people know you could really use some company.
Adrienne found she didn’t want to talk to her old friends about caregiving. She wanted to keep her friendships as a bubble of her old, normal life. Instead, she wanted to talk to other caregivers, who better understood what she was going through. So she created this community.
It’s true — your friends might not understand what you’re going through. Those long hours in waiting rooms and hospital cafeterias are an opportunity to meet new people who get it.
But don’t let go of your old friends. Even if they’re awkward around you now, remember they have their own struggles. Invite them over for coffee, even if your house is a mess and you’re stressed out. Write them an email. Ask how they’re going and listen. You need them.
Know your strengths
None of us are good at everything.
Some of us are just not good at keeping track of bills and insurance paperwork.
Some of us have limits to our patience with other peoples emotional needs and poor behavior.
Some of us aren’t very good drivers.
You’re going to do a lot of things, but you can’t do everything. You shouldn’t do everything. Identify the things you just aren’t your strengths and find help with them.
Who will help? Social workers, librarians, and faith communities are a great start. There are community organizations that will help you with your taxes, provide free transportation, do your yard work, and provide companionship for your caree. Every community has different services, but someone you know can help you find help in your area. You can’t do this alone. And you don’t have to.
This is one of those times when Facebook can really help. Ask for something specific and you’ll have better luck.
If you’re providing 100% of the care and not sharing the burden, if something happens to you, whoever steps into your shoes will be lost. It’s not good to be irreplaceable. Other people will do things differently. They’ll be annoying to deal with. They’ll disappoint you. But it’s still worth it to get help.
People don’t feel good when they can’t contribute. Is there something your caree can do to help you? Ask them to do it. Everyone has something to give — and they feel better when they have the opportunity to share it.
Know what you need
It’s incredibly difficult to know what we need. What will make us happy? People have been studying that for millennia.
When you know what you need, you’re half way to solving the problem. Identifying a need means you can find ways to meet that need…or learn to accept that it’s going to be unmet.
Not getting what you need leads to resentment. Resentful caregivers are not good caregivers, no matter how hard they try.
The thing is, no amount of self-care will allow you to be a 24/7 caregiver for a decade without burning out. Sometimes you need a real break — a vacation from caregiving.
Lots of us are taking care of people we love. We don’t want to go on vacation without them. That’s fine. Bringing in a professional caregiver — or a cleaner, handyman, personal assistant — can free you up to have quality time with the person you love. Rather than focusing just on caring for them, you can really be with them.
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.
Our private Facebook groups are pretty active, so you might find they take over your Facebook news feed.
Don’t worry, there’s an easy solution.
Find a post from the group that’s taking over your news feed and click on the little triangle in the upper right corner to reveal a menu.
By “unfollowing” a group, you’re still a member of the group, but posts from that group won’t appear in the news feed anymore.
In order to participate in the group conversations, you can add a shortcut. Go to the group you want to create a shortcut for. In the upper right there’s a button with “…” that will reveal a menu. Choose “pin to shortcuts.”
Now a shortcut for the group appears on the left side of your Facebook account.
When there are new posts to your group, a number will appear next to it. This way you can stay a part of the conversation without getting constant notifications or filling up your Facebook news feed!
A friend of mine in Brussels casually mentioned how she’d wanted to take a sabbatical, but the new government had changed the program. She’d hoped to take some time off to work on personal projects, but she worried about what would happen to people who relied on a sabbatical to take care of relatives. What would they do now that the program provided no financial support?
Her comment really piqued my interest — what programs are available to family caregivers in Belgium?
Belgium’s time credit system
In Belgium employees were able to take a tijdskrediet / crédit-temps or ‘time credit’ while collecting most of their regular salary. To be eligible they had to have worked full-time for two years and at least one full year for their current employer. Employees can take up to a full year off or can work half-time for slightly longer than a year. They can also work 80% of the time for up to 5 years, or longer if the employer agrees to it. At the end they would be able to get their job back or return to full-time work. Employees could do this for a maximum of three years during their working life.
The government would cover most of the cost, with the employer covering a ‘supplement.’ The employer cannot deny an employee’s request for a sabbatical without a serious business reason. In a country where the social safety net makes it expensive and difficult to reduce the workforce, sabbaticals can be a way for a company to reduce their expenses while encouraging their employees to take care of their families and pursue interests. This was also seen as a way to get people back into the workforce, as it increased the number of available temporary job opportunities.
Encouraging work/life balance
Employees who are ill, have a new child, or have an ill relative are all encouraged to take a sabbatical. The government has introduced tax incentives to encourage people to outsource household tasks, like cleaning, cooking, and childcare. This is intended to reduce stress on working women and turn unpaid work into paid career opportunities. Overtime pay must be paid to people who work over 39 hours per week. Still, many more women work part-time than men in Belgium.
The history of time credits
The time credit system was introduced in 1985, as a way to reduce unemployment and address work/life balance. Employees could interrupt their careers for family obligations, education, personal projects, or any reason at all. Employers were required to hire an unemployed person during the sabbatical, bringing many people back into the workforce.
In 2002 the law was changed so employers were no longer required to hire an unemployed person to fill the position during a sabbatical. Trade unions have generally supported the sabbatical system as long as employees were taking work reductions voluntarily.
The option to work 80% of the time has become very popular among men and women over the age of 50, who are very likely to be providing support for their own parents as well as grandchildren.
In January of 2015 the time credit system was changed so that the National Employment Office no longer covered any of the employee’s salary. Employees can still take time off for a sabbatical, but they have to do so without pay. Older persons wishing to reduce their hours indefinitely to ease into retirement must now be 60 years old.
Luckily, Belgium provides other support for the 12% of the population providing family caregiving. Of the elderly in Belgium, 82% have an informal caregiver.
Paid family caregiving
Family caregivers in Flemish Belgium are provided with allowances. The amount of financial support and eligibility criteria are different for each region. There’s also a small payment intended to cover out-of-pocket expenses, which averages 30 euros per month. Flemish Care Insurance is mandatory for all residents. In most cases, cash benefits provided are reduced if the household income is over a certain amount.
Anecdotally, because many people providing care don’t identify as caregivers, they don’t apply for financial support designed to help caregivers.
In addition to sabbaticals, family caregivers have access to:
- Palliative care leave for terminally ill parents (2 months + 1 month extension, with 750 euro/month)
- Medical assistance leave (up to 12 months, taken in 1-3 month increments, with 750 euro/month)
- Emergency leave (10-45 days/year)
Caregivers in Belgium have access to training through nonprofit organizations. There is no centralized service for respite care and counseling, although these are available to most people. Like the US, most services are designed based on the location and condition of the person receiving care.
Because 99% of the population is covered by compulsory health insurance, patients face limited health care expenses. However, these expenses can still be a serious burden on families. Home care is covered for low-income families and on a per-diem basis.
Disabled people in Belgium are given a dependence allowance and a personal assistance budget, which are meant to assist with caregiving expenses. However, these funds are used at the discretion of the care recipient. Care recipients are also eligible for an income replacement payment and other allocations.
Like caregivers in the US and Canada, caregivers in Belgium are hesitant to use the respite care available to them because of feelings of guilt, objections from the care recipient, and fears of loss of privacy.
Social Entitlement credits
Belgium worked to create a legal definition of family caregiving from 2008, passing the law in May 2014. The goal is to provide tax benefits for caregivers and social security credits for time spent providing care. This could also provide family caregivers with specific rights and workplace protections.
Thankfully, even self-employed persons in Belgium are entitled to caregiver support and sabbaticals.
Belgians are legally obligated to provide for their elders and the average nursing home cost exceeds the average pension payment.
Family caregivers in Belgium suffer from fragmented information sources and a lack of continuity in care. One survey of family caregivers in Belgium of people with mental health issues found that 1 in 4 were dissatisfied with the support they received from their workspace.
Would you like to see these programs extended to the US or Canada? Do you think they would work in another country? Have you provided care for a loved one in another country?
Things have changed a lot in the US during my grandmother’s lifetime.
My grandmother retired before I was born. Usually the people I remember as having been “old” during my childhood turn out to have been slightly older than I am now. Not so with my last remaining grandparent, who looks quite old in photos where my parents are younger than I am.
I used to tag along with my dad to her house multiple times a week, making sure everything was taken care of. She could live alone, but she needed help with little things. She’s never been a fan of children and I can’t imagine I was much help, so I’m sure no one really cared when I stopped going.
Why did I suddenly refuse to visit my grandmother? I was so angry that she knew who my sister was (the pretty one) and had not the slightest clue who I was (the nerdy one), even though my sister visited her only for required family occasions. The first time she forgot who I was, everyone brushed it off. I boycotted grandma.
It was nearly 20 years before anyone diagnosed her with dementia. The amount of help she required each week grew gradually, until it was clear she needed my father to move in with her.
When my grandmother was working age, it was unusual for a woman to work. The elderly and infirm were expected to be cared for by the wives who looked after the children. The daughters were expected to help.
Now only the wealthy can afford to survive on a single salary. Even those who could afford to have one spouse stay home often have ambitions beyond their homes. As the pay structure and societal expectations shifted, the rest of the world failed to shift to accommodate the needs of childcare and eldercare.
When Social Security was unveiled, the life expectancy of an American was 62 and payouts began at 65. Today, most people live to see 80. No wonder the system is always on the verge of collapse — it wasn’t designed for this.
More and more people rely on Medicare while fewer people pay into the system.
With many parents requiring care starting in their 60s, most people will spend more years providing eldercare than childcare. Children spend hours a day at school, elders require 24/7 care with little financial support.
They’re expected to support themselves, save for retirement, put their kids through college, and support their parents. People are collapsing under the weight of these unreasonable requirements.
As soon as I was living on my own, my parents eldercare responsibilities intensified. And now they’re providing childcare for their grandkids while still taking care of their own parents. So much for an empty nest. While the other elders in our family have passed away, grandma still needs 24/7 care.
My parents have been fortunate: they’ve made it through the financial and emotional gauntlet of eldercare with their own lives largely intact. They had jobs that provided the flexibility to provide eldercare, often for multiple people at a time, without having to give up an income. So many haven’t.
Our lives have changed. It’s time our system for eldercare changes, too.
We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.
Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.
In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.
We can’t support each other if we’re busy tearing each other down.
The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.
Millions of caregivers means millions of opinions
We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.
There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.
That’s a lot of different people, in different situations, with different hopes and dreams and ideals.
No matter how different we all are, there’s one thing that binds us together: caregiving.
Because there are some things only another caregiver can understand.
Are politics on your mind?
The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.
If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.
If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.
The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.
It doesn’t matter how you voted, or if you voted. At The Caregiver Space we believe all caregivers deserve support.
Are you thinking it’s time to schedule a family meeting to talk about your aging parents?
Don’t do it.
I’m really comfortable talking about caregiving and I love my family, but the thought of sitting down with them all at once to discuss it stresses me out.
Would you want your entire extended family to gather together so they could plan out your impending death? That sounds awful. Let’s save family gatherings for fun stuff.
Start the conversation
You don’t need a special occasion to talk about aging.
The sooner you start talking about aging, the better it is for everyone. The longer the conversation is delayed, the more it’s going to feel like a big, scary problem. Aging isn’t a problem. Enough of us need help, even temporarily, long before we’re getting AARP in the mail that it’s good to have these discussions with everyone we care about.
First, write down all the questions you have for your parents. Maybe you want to ask them:
- What will you do if you need help every day?
- How much can your family help you?
- What would you do if you couldn’t stay in your own home?
- How can you adapt your home to make it safer?
- How can we pay for medical care?
- How can we pay for home health care?
- How can we pay for nursing care?
- What’s most important to you if you become very ill?
- Who do you want to make decisions for you if necessary?
Then, answer all of these questions for yourself. What would you want if you were ill or injured?
Look over your insurance policies, your medical coverage, your savings, and your bills. Fill out a living will. Think about what your family would do without you.
Then think about how you should approach these topics with your parents.
Perhaps the easiest way to start the conversation is to talk about yourself. I’m a millennial, but I’ve given both of my parents copies of my living will. Calling my parents to discuss insurance plans elicits information on their own plans and concerns. My debates on whether remodeling my bathroom to conform with universal design surely get them to look at their own bathrooms with a critical eye.
Know what matters
The idea isn’t to get ready for your parents to die, it’s about knowing what they value the most. What pieces of their identity are most crucial? What gives their life meaning? These are the sorts of things parents are probably happy to talk about.
The stronger your relationship and the better you know each other, the easier it is to talk about what they’d want their lives to be like if they were to be seriously ill or disabled.
These aren’t things most people think about. Sometimes people can’t answer because they have no idea what they want. You have to talk it through a couple times before you can stick a medical directive in front of someone and expect them to fill it out.
These conversations are so important. My mother hasn’t written out a living will, but we’ve talked about enough things over the years that I feel confident that if something happened, I could make the choice she’d want me to make for her.
Plan from the beginning
We spend so much time planning our retirement, but people will refuse to talk about picking a home where they can age in place or sketching out a long-term care plan. Not talking about these things doesn’t make them go away, it just makes it scarier when it does happen.
When you evaluate a new place to live, think about how you’d be able to navigate it on crutches, with a walker, or in a wheelchair. When looking for a new job, think about the medical and disability coverage. How much is enough to save for retirement care? Ask your parents how they navigated these decisions as each of them comes up.
Don’t make it awkward
Any time someone tells me “we need to talk” I feel a little panicky. Don’t make it more awkward then it has to be.
There are so many great articles, podcasts, books, and movies to prompt deep conversations about what matters to someone. We talk about what we’d do if we won the lottery, we can learn to talk about things that are more likely the same way.
Then you’re talking about this amazing book you just read, not planning their demise.
If you’re really ready to get creative, plenty of historic cemeteries offer tours. Quite a few of them are gorgeous places with fascinating stories. If your family shares a certain type of humor, bringing it up while standing in a crypt is one way to make the conversation unavoidable.
Resilience isn’t being impervious to hard times, it’s the ability to recover from difficulties.
When you’re caring for someone who verbally abusive or requires every moment of your attention, it’s incredibly emotionally draining. It’s unrealistic to try to not be offended or learn to live without alone time. It’s realistic to learn how to recover emotionally and regain your balance.
Assess the situation
Take a moment to think of how you really feel. If you’re upset, what does ‘upset’ break down to? Disappointment? Frustration? Longing for appreciation?
Think about how you feel and why you feel that way and you might just be able to make the situation a little easier to improve.
Reframe the situation
People usually aren’t being inconsiderate because of something about you, it’s usually about them. Someone snaps at you because they’re over-tired. Someone is late because they overslept. Someone lets you down because they’re caught up in their own needs.
Peoples actions aren’t always a reflection of how they really care about you or value your help.
We tend to overestimate people’s physical needs. It’s okay to push someone to try to be more self-sufficient — or a little patient — if it’s not going to put them in danger.
Agreeing to do things you can’t possibly do or taking on more than you can handle isn’t necessarily better than saying “no” with love.
Accept your own abilities
No matter how hard you try, you’ll screw up. You’ll let people down. You’ll make mistakes. You’ll hurt people’s feelings. That doesn’t mean you’re a bad person, it just means your a person.
When you start to feel guilty about something, ask yourself if it’s really something you were responsible for. It’s okay to feel sad about how things turned out, but there’s no need to take on the blame.
Even if you were responsible for something bad that happened, remember that we all do things we regret. Think about what lessons you can learn and forgive yourself.
There’s no need to go it alone. We all feel alone sometimes, but there are things we can do to lessen that. Connect with other caregivers, online or in person, and reach out to your social network.
You deserve support, encouragement, and understanding.
Remember why you’re here
Some days you probably want to walk out the door and never come back. But you don’t. No one is really forcing you to stay, as much as it may feel that way. What keeps you there?
Remembering the reasons you have to stay — and reminding yourself that it’s a choice — can help you feel in control of the situation.
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.
I don’t need to tell you how expensive caregiving is.
I won’t claim that tax breaks for caregivers are enough to really lessen the financial squeeze. Every little bit helps, though.
A tax deduction lowers the amount of taxable income you have. If you make $30k a year and have $5k in deductions, you only owe taxes on $25k.
A tax credit reduces the amount of taxes you owe. If you owe $5k in taxes and have a tax credit for $1,200, you will only have to pay $3,800 in taxes.
If you’re self employed, there are other considerations, too.
Who’s a dependent?
Generally to be your dependent, you must provide at least half of their financial support and they need to be either related to you or have lived with you for a full year.
If several family members provide half or more of the support, you must choose which family member will claim them as a dependent. You’ll need to file a mutual support declaration, form 2120. A person can only be claimed as a dependent by a single tax payer.
Not sure if the person you care for is a dependent in the eyes of the IRS? Find out here.
Payments your caree makes to you
If you take care of a family member and they give you money to help with household expenses, you don’t need to pay taxes on this. This is not considered income by the IRS. It does, however, count as support in determining if your family member is a dependent for tax purposes.
If you cash a family member’s social security benefits and use them to pay for their care, you don’t pay income tax on them. It’s still considered their income.
Medical and dental deductions
If you itemize your tax deductions on Schedule A, you can deduct medical expenses for you, your spouse, and your dependents.
In order for medical expenses to be tax deductible, they have to total more than 10% of your adjusted gross income (AGI). If you or your spouse is 65+, they have to total more than 7.5% of your AGI.
How much can you deduct
You can only deduct expenses over the allowable amount. If you’re 32, your AGI is $35,000, and you have $7,510 in medical expenses, here’s how the math would look:
35,000 x .10 = D 7,510 – D = medical expense deduction
35,000 x .10 = 3,500 7,510 – 3,500 = 4,010
You would be able to deduct $4,010 of medical expenses on your taxes.
What can you deduct?
- Payments and co-payments to doctors, dentists, surgeons, chiropractors, psychiatrists, psychologists, and nontraditional medical practitioners
- Payments for in-hospital or residential care, including the cost of meals and lodging
- Rehabilitation, therapeutic, preventative, and personal care services for people who are chronically ill who need support for ADLs
- The cost of eyeglasses, contact lenses, hearing aids, false teeth, crutches, wheelchairs, and guide dogs
- The cost of prescription drugs and insulin
- Medically necessary home improvements
- Special medical equipment you have installed in your home (must be adjusted based on any increase in your home value)
- Handicap accessible vans or vehicle adaptations
- Payments for transportation to and from medical care appointments (including taxi fare, standard mileage, tolls, and parking)
- Payments made for insurance premiums for policies covering medical and long-term care.
- Medically required food
- The cost of attending medical conferences related to a chronic disease you, your spouse, or dependents have (but not meals and lodging, only admission and transportation)
- Treatment for alcohol and drug addiction and smoking cessation
- The cost of medical weight loss programs if it’s to treat a specific condition diagnosed by your doctor
What can’t you deduct?
- Anything your employer or insurance reimbursed you for
- Funeral expenses
- Over-the-counter medicines
- Health club fees
- Diet food
- Toiletries and cosmetics
- Costs of medical tourism (but the procedure itself is allowed)
- Most cosmetic surgery
- Non-prescription nicotine gum or patches
You can only deduct medical expenses in the tax year they were paid. You can get more specific information from the IRS.
Child and dependent care tax credit
The federal government and more than half of the states provide tax credits for the expense of home care or adult day care. This credit is up to 35% of qualifying expenses, based on your AGI, and is filed on form 2441. You must name the care provider on form W10.
Any money paid to your spouse, the parent of the qualifying person, any of your dependents, or anyone under the age of 19 is not eligible.
You cannot claim this tax credit if you’re married filing separately.
If you pay an individual, you may be required to pay social security, Medicare taxes, and unemployment taxes if you are considered a household employer. You cannot claim expenses for anyone you paid ‘under the table.’
Most states allow you to deduct a percentage of your federal tax credit from your state taxes. Check to see if your state provides a tax credit for dependent care.
If they’re not a dependent
Even if someone isn’t considered your dependent, they can still claim their own medical expenses on their tax return.
Elderly and disabled tax credit
This credit is for people who are elderly or disabled and file their own taxes (not as your dependent). If someone 65+ or who is disabled (and any age) has an AGI lower than the required threshold, they can get the elderly and disabled tax credit. This goes on Schedule R.
Few people expect helping a family member to require them to become a bit of a tax expert, but many of us find ourselves navigating major financial decisions.
Your real estate attorney or financial advisor may not offer up information about the tax breaks you’re due as a family caregiver. Asking them if you qualify can save you thousands of dollars of taxes you don’t need to pay!
If you’re about to sell your home or the home of a family member because of their health, read this first and talk to your real estate lawyer and accountant.
We also have tips to share on how to get a home ready to sell. Many caregivers find themselves in charge of selling houses that haven’t gotten a face-life in a while and we need to get the best price for it that we can!
The capital gains tax exclusion
Many people are aware of the capital gains tax exclusion on your primary residence. If you’ve lived in your home for 2 out of the 5 years before you sell it, you don’t owe taxes on the first $250k of capital gains. If you’re married, that number jumps to $500k. That means if your home sells for more than what you bought it for, you don’t owe any taxes on the first $250k or $500k of profits.
Any money you spent increasing the value of the home –like an addition or upgrades, but not routine maintenance — counts toward the original price you paid. So, if you bought a home for $100k, spent $25k in renovations, and sold it for $250k, the IRS sees $125k as the price you paid for the home and you get $125k in tax-free profit.
If you own your home with someone you aren’t married to, you can each claim the $250k tax exemption, for a total of $500k, as long as you both qualify.
You can only use this capital gains tax exemption on your primary residence once in any two year period. However, this requirement is waived if you move twice in two years because of a change of employment, health, or other unforeseen circumstances.
This tax exempt status is incredibly important for everyday Americans who own their home. It helps families support themselves in retirement, pay for college, cover major health care expenses, and climb up the economic ladder.
What if you don’t meet the requirements?
There are many reasons why you may buy a home and have to sell it before you’ve lived in it for two full years. The IRS isn’t known for being a caring institution, but it does try to help family caregivers who need to move. That’s why they waive the requirements if you have to move because of a change of employment, health, or other unforeseen circumstances.
The IRS will grant you a reduced tax exclusion for quite a few caregiving related reasons.
You qualify for a reduced capital gains tax exemption if:
- You can no longer afford to stay in your home because your caregiving has required you to cut back your hours, quit your job, or resulted in you losing your job.
- If you’ve gotten a job transfer or taken a new job to be closer to a loved one who needs support. This generally needs to be more than 50 miles from your old home.
- Your home is not suitable for a family member because of their disability.
- A family member needs to move in with you for health reasons and your home is not large enough to accommodate them.
- If you moved to be closer to a treatment facility for yourself or a family member.
- If the climate of the area you lived was not suitable for a family member’s health.
- Anyone in your household has passed away.
- Anyone in your household has lost their source of income.
- You and your spouse get divorced.
- You’re forced to move because neighbors object to a family member’s mental or physical disabilities.
- A family member requires a service animal and your condo prohibits animals.
A family member, in this case, is your spouse, any children or step-children who live with you, a co-owner of the home, anyone who lives with you, a parent or step-parent, grandparent, grandchild, sibling or step-sibling, your in-laws (including siblings), aunts or uncles, nieces or nephews, and cousins.
If you’re selling a family member’s home for them, they can qualify for a partial capital gains tax exclusion if:
- They need to move into a residential care facility for physical or mental health reasons and have lived in their home for one full year.
- They have become disabled and their home is not accessible.
- Their neighbors object to their mental or physical health issues.
- They can no longer afford their home because they’ve lost their income or their income has been reduced.
- Someone in their household has passed away.
- They’ve gotten divorced and can no longer afford their home.
- They require a service animal and their condo prohibits animals.
You’ll want to get a letter from your doctor to support your need to sell the home in case you’re audited.
If the home owner requires residential care
If your spouse or another family member owns the home you live in, they can include any time they were living in a licensed assisted-care facility as part of the two years, as long as they lived in the home for a year in the 5 years before the sale. If your parent buys a home and lives in it for a year before having a health issue that requires you to place them in a nursing home, they can claim the tax exemption as long as you sell the home within 4 years of when they’re moved to residential care.
If your spouse has died
If you’re selling your home because your spouse has passed away, you can claim any period of time your spouse has owned and lived in the home as if you had lived there and owned it, too. So if you were married less than two years ago and moved into a home your new spouse had owned and lived in for more than two years, you can claim the full capital gains tax exclusion when you sell the home.
If you sell the home the year your spouse passed away, you can file your taxes jointly with your deceased spouse and claim the full $500k exclusion. If you wait and sell the home in a future year, you can only claim your $250k exclusion.
What’s the reduced exemption?
The reduced capital gains tax exemption on your primary residence is determined by a formula.
Maximum capital gains tax exclusion multiplied by the number of days divided by 730
The maximum exclusion is either $250k (if you’re single) or $500k (if you’re married).
The number of days is:
- the number of days you owned the home and it was your primary residence
- the number of days you used the home as your primary residence
- the number of days between when you used the capital gains tax exclusion for a prior home sale and the date of the current sale
You use whichever of the three options is the fewest days.
730 is the number of days in two years.
Let’s say you and your spouse bought a home and a year and a half later, your sister-in-law is in an accident and needs your support. You and your spouse decide to sell your home and buy a new home that’s accessible for her needs. You’d be eligible for a partial capital gains tax exclusion. The math would look like this:
500,000 x 547.5 / 730
273,750,000 / 730
In this instance, you won’t owe taxes on the first $375k of proceeds from the sale of your home.
As America becomes more and more fractured, caregiving is one thing that can bring us together. The burden of caregiving is inescapable.
Rural, urban, suburban, caregiving cuts across geographic divides. No political affiliation is immune to illness, disability, or aging.
No amount of money can insulate you from the stress of caregiving. Even the wealthiest worry about the cost of medical care and support.
We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.
Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.
We’re not taking sides because there is no “other side.”
There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.
The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.
No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.
Let’s come together and ask that every political platform include support for caregivers.
As the oldest child, my mother has been called upon to serve as the executrix for multiple family members. I recently asked her what was involved with executing a will and she was kind enough to write this up for us:
Being named executor of someone’s estate is a daunting task, involving patience, fortitude and responsibility. Talk with the individual about his/her wishes and financial holdings when you are both calm and clear-headed, well BEFORE the final act.The conversation should include funeral arrangements; location of the legal will; where financial docs, passbooks, stock certificates, deeds, etc. are kept; how the contents of the home should be distributed; if the individual has a prepared obituary available.
The legal will should NOT be kept in a safe deposit box.
When the meeting with the funeral home takes place, try to have someone accompany you. Mourners are sometimes moved by guilt and grief in spending more than might be prudent.
Order more death certificates than you think you will need. For each account (bank, life insurance, investments, even EZPass) one must submit a death certificate with a raised seal.
Probate the will. This means bringing the original will and death certificate to the county seat in NJ where the deceased resided. Sometimes satellite offices are set up at local libraries. As a result of this meeting, a surrogate’s letter (sometimes called letter of testamentary) will be generated. When the executor of the will liquidates the deceased’s assets, a death certificate and surrogate’s letter minimally must be produced.
Regarding the deceased’s checking account, it would be optimal if the deceased and executor have a joint account. Bills must be paid for the deceased while the estate is being executed, which sometimes takes months. If a joint account has not been established, be aware of how long the checking account will be kept viable by the bank before it is closed.
Notify by mail the heirs named in the will.Notify all agencies of the deceased’s holdings (banks, investment companies, life insurance, pension offices, etc) of the owner’s death. The funeral home will notify the Social Security office automatically.
Keep careful records of all financial transactions while liquidating the deceased’s holdings. Include detailed expenditures and deposits in the checkbook.
Should the contents of a home need to be removed, enlist help. Hopefully the deceased will have already distributed special possessions to the special people in his life or included directives in the will. Additionally it is recommended before death to clean and organize the home as much as possible. If multiple visits to charitable drop-off locations (Goodwill, ASPCA for pet bedding, local thrift stores, Elks for medical supplies) is not possible, there are agencies who will empty out a home. Freecycle is another option.
Depending on the estimated value of the estate, enlisting an account or an attorney could be prudent. Although there are numerous resources on-line, in local county offices and in publications, it is often easier to phone a professional for advice.
It is possible that financial holdings should not be liquidated without tax waivers. This is pertinent if the estate’s value is very substantial (check the actual number according to the residence of the deceased). Taxes for the estate must be paid, including federal and state income tax and estate tax. Hopefully the deceased has considered financial planning BEFORE his passing which could include trust funds, gifting and other options.
The caregiving for my Uncle fell upon my mother. He did not want the family to provide hands-on care, so he made sure to have a live-in home health aide. The logistical and legal aspects of care and his estate were still significant.
After his passing, I went with my mother to help clear out the home he’d lived in for over 25 years.
His home was always meticulous, so it was odd to see things that didn’t belong.
The TV captures his personality so well.
Even retirement communities don’t design space for mobility devices.
You can die at home, but rarely in your own bed.
Meticulously kept records of his daily status.
My uncle was a very frugal man. These pencil stubs made us all laugh.
I suspect these ingredients are left from before my Aunt died…when I was in elementary school.
If this, then that is a handy little free tool to automate tasks. This isn’t an app that’s going to take up a bunch of your time — I use IFTTT every day, but I only log into my account once a year or so. Set it and forget it.
Here are some tasks you might find helpful…
Send a message when you’re on your way
If someone wants to know when you’re heading home — or leaving home — this is a handy tool.
Android / Skype / Gmail
Keep your family in the loop
This is a simply way to email your whole family — or anyone you’d like on the list.
Keep a list of notes to email yourself at the end of the day
Get an alarm clock phone call
Here’s an alarm you can’t snooze.
Get an escape phone call
Have a neighborhood who’s a little too chatty? Text for help and get an “urgent” call.
Figure out your location
Not sure where you are? Or maybe this is something for your loved one to use!
Get a reminder about the rent
Or whatever other bills you have to pay. Not all of us are comfortable with automatic bill pay, so automatic reminders are a sure win.
Get a notification if it’s going to rain tomorrow
Getting caught in the rain can be pretty terrible. Get a notification to your phone to let you know when you’ll need to be prepared. You can also get an email. Want to know if the pollen count or UV index will be high? Consider it done.
Internet of Things IFTTT tools
These applets require gadgets (that can be pricey!) but are cool enough that I couldn’t resist including them.
Start your morning routine
Turn on the lights, start your coffee, and get going.
Blink the lights when the doorbell rings
This is perfect for the hard of hearing, or people like me who’ve learned to totally tune out background noise.
Text a caregiver if the smoke detector goes off
What happens if you’re not there when the smoke detector goes off? If you have a Nest, you can make sure you or a neighbor gets the message right away. You can also use Nest to tell you if someone’s home.
IFTTT also works with a whole collection of tools that can help you keep an eye on home when you’re away, but I’ve already promised some of our community members to create a separate round up of monitoring tools.
We’ve all heard stories about people using Facebook to reconnect with long-lost classmates or make new friends. I love Facebook because it helps me keep in touch with friends around the world. Now, when I call someone I haven’t spoken to in a while, I already know a little bit about what’s going on in their lives, so I can ask specific questions and skip the small talk. It’s easy to remain a regular part of someone’s life through a quick comment or share. It also lets me know when to reach out to a friend who might be in need of support. Facebook is a great tool for anyone who wants to maintain relationships with people they don’t get to see on a regular basis. It’s an amazing way to rally support when you need it — people are always online, so you’re really never alone.
If you’re not on Facebook yet, you can get started with this guide. If you already have a Facebook account, keep reading.
Facebook is a great resource, but it can cause trouble if you don’t use it wisely. I’m going to walk you through two important topics: Privacy and Pages.
First, a little terminology:
- Newsfeed: The page you see when you first login to Facebook
- Profile: Your webpage on Facebook or the webpage of another person
- Page: Like a profile, but for organizations or companies
- Wall: aka Timeline. The part of a Facebook profile or page that shows content that has been shared in chronological order
- Post: When you share an article, an update, a photo, etc. you’re creating a post
Privacy on Facebook
One of the neat things about Facebook is you have a lot of control over what you share with who. Your profile can be public or private. In fact, you can make post only visible to specific people, a list of friends, members of a group you belong to, or friends who went to a certain school. Visit Facebook’s instructions for details on how to control privacy.
Posts to groups will either be public or private, depending on group settings.
All posts on Facebook pages are public.
ublic posts don’t just appear on the profile, group, or page where they’re originally posted. Public Facebook posts can be shared with other profiles, pages, or groups. They can appear in the timelines of people who are connected to the author, the author’s friends, the group, or the page. They can also appear in public search listings, like on Google.
What does it mean if a post is public?
If there’s someone you can think of who shouldn’t see your post, don’t put it on Facebook! This is why we encourage caregivers to vent and share personal experiences in our caregiver forums or our caregiver Facebook group.
Reasons to not share personal information on Facebook:
- If you discuss someone else’s healthcare, you may be accused of HIPPA violations. Paid professional caregivers have been fired for posting patient information on Facebook.
- If you complain about a family member not helping, they may see your post and it could make the situation worse.
- If you share details of someone else’s life, they or someone they know may see it and be offended.
- If you share personal details of caregiving, people may react negatively. Posts about hygiene, mental illness, and other sensitive topics have elicited responses that were critical and unproductive.
You deserve a safe space to openly discuss what’s on your mind. Facebook is an open forum with millions of members – including bullies and scam artists. We maintain a separate website in order to create a safe space for caregivers. Facebook is a great tool, but it doesn’t cater to caregivers.
Is this post public or private?
When you look at a post, there’s a little icon next to the date and time. If you see a globe icon, the post is public:
If you see something that looks like this you’ll know it’s private:
If you place your cursor over the private icon, you can get more information about who can see the post:
In a Facebook group
Our Facebook page shares articles from our site and other things that caregivers should know about. Our Facebook group is a place where you can connect with other caregivers.
A Facebook group is either closed or public. If a group is closed, people need to be approved by a moderator before they can join the group. All posts within the group are visible to group members only. It says ‘Public Group’ or ‘Closed Group’ under the name or the “about” section.
Our Facebook group is a closed group, so anything you write there is only visible to other caregivers in our community.
If a Facebook group is public, anyone can join and all posts are public.
Connecting with Facebook pages
Controlling what shows up in your newsfeed
If you ‘like’ a page on Facebook, you can still choose whether or not you want to see posts from that page in your newsfeed. If you’re ‘following’ a page, you’ll see posts from that page in your newsfeed. If you aren’t following (like in the example below), you won’t see posts from that page in your newsfeed.
You can customize what you see in your newsfeed using Facebook’s settings.
Why don’t I see Caregiver Space posts in my news feed?
Facebook can be a bit tricky sometimes. They try to guess what we want to see, but sometimes they get it wrong. Luckily, you can adjust your settings to decide what shows up in your newsfeed.
I’m going to use Donna Thompson’s page to show you how adjusting your settings works. This works for any Facebook page.
If you go to the Facebook page you want to see more of, you’ll notice there’s a little arrow on the “Liked” button. If you hover over that, it’ll show you a few options.
If you click on the little pencil icon to the right of “In your news feed” you’ll get these options:
If you set it to “See first”, our posts will almost always show up in your news feed. If you choose “default” it will guess based on the algorithm. If you choose “unfollow” it will un-like the page. We post pretty frequently, so if having it set to “see first” is too much, you can also occasionally go to our page and “like” or comment on a few of our posts. That will let Facebook know you want to see more from us.
You can also click on “Notifications” and it’ll give you a notification when we post things.
If you select the “notifications option, it’ll show up in the notification bar, where you see the “13” in the screenshot below:
Where’d my post go?
I get messages from people all the time who’ve posted something to The Caregiver Space’s page and can’t figure out where it went. Most organizations and companies aren’t as eager as we are to have people post on their pages, so Facebook puts posts by anyone who isn’t a page moderator off to the side. In this screenshot, you can see where the ‘Visitor Posts’ are…way, way down at the bottom on the right side.
We want to help caregivers connect, so we’ll usually ‘share’ your posts. However, this makes it very likely that people you know will see your post, even if they don’t ‘like’ our page. This is why we share some messages and not others. We’re not trying to censor you – your original post is still there on our page – but we don’t want to draw attention to something that might be personal.
If you’d like to connect with caregivers privately, join the conversation on our caregiver forums or our Facebook group.
- posts asking for support
- pictures of you and the people you love
- relevant articles from a variety of sources
We don’t share:
- posts containing personal details
- posts containing medical information
- advertising, even requests for donations
We encourage you to share the things you need to get off your chest, requests for advice, your personal caregiving experiences, and requests for donations on our forums.
Why are they ignoring my message?
You meet someone on a Facebook page who is in the same situation as you and take the time to write them a thoughtful message. And then they never respond. What happened?
It’s likely that Facebook has filtered out your message into their ‘other’ inbox. That’s Facebook’s version of a spam folder. That’s where messages end up if you’re not ‘friends’ with someone on Facebook.
Facebook has a lot of options and features which can get a little confusing. Don’t get too worried about it, though — the simplest thing is to just keep your information private.
Want to know more? Mashable has a great guide for Facebook beginners.
Featured image: JaysonPhotography / Shutterstock.com
Prostate cancer is highly treatable. You will hear over and over again that men die with prostate cancer, not of prostate cancer. You might be shocked to discover how many men you know have had prostate cancer or are living with prostate cancer. Prostate cancer is the second most common type of cancer for men worldwide.
1 in 6 American men is diagnosed with prostate cancer during their lifetimes. The vast majority — almost 100% — of men who are diagnosed with prostate cancer are still alive 5 years later.
1 in 36 will die of prostate cancer.
Nearly 3 million men in America are living with prostate cancer.
Every cancer is unique. Your treatment team will figure out how to treat your specific type of cancer.
We don’t get cancer in a vacuum — most prostate cancer patients have other conditions or disabilities to contend with as well. Other health issues can complicate things, changing how you respond to treatment and what treatments are safe for you.
Many people are successfully treated and undergo periodic prostate cancer treatments for the rest of their lives. It’s not uncommon for prostate cancer patients to live for decades with the disease.
Understanding prostate cancer
Diagnosis, indicators, and other tests
Prostate cancer typically doesn’t cause any symptoms in its early stages. Most men will never experience any symptoms of prostate cancer. Those who do may notice:
- Frequent or burning urination
- Difficulty in having or maintaining an erection
- Pain when ejaculating
- Blood in urine or semen
- Pain or stiffness in the lower back, hips, or upper thighs
Those symptoms could have myriad causes, so your doctor will conduct tests before giving you a diagnosis.
Early diagnosis of prostate cancer does not necessarily reduce the chance of dying from prostate cancer. Small, asymptomatic tumors may be developing so slowly that they effectively present no risk.
Some men with prostate cancer may never know about their cancer before they die of natural causes or from another cause. Detecting non-threatening tumors is considered overdiagnosis and treating these non-threatening tumors is over-treatment. Because diagnosis and treatment all carry risks, over-diagnosis and over-treatment can cause problems for men and their loved ones.
Prostate Specific Antigen Test
The PSA test is a blood test that checks for an antigen that is elevated in men with prostate cancer. The PSA is used both as a diagnostic tool and to monitor the progression of prostate cancer.
There are other benign conditions that can elevate the PSA score, so a high score does not mean you have prostate cancer. Not all men with prostate cancer have elevated PSA levels. Of men who have an elevated PSA score, only 25% of biopsies show cancer. The other 75% of men with elevated PSA levels do not have cancer.
Doctors monitor PSA levels to look for changes in prostate cancer, to see if it’s progressing, and to see if it’s recurred. An elevated PSA level may be the first sign of a prostate cancer relapse. There is no official normal amount of PSA and PSA levels can fluctuate. Types of cancer treatments and UTIs can change PSA levels.
While PSA levels aren’t a foolproof way to diagnose and monitor prostate cancer, the generally strong correlation between PSA levels and prostate cancer make it an important tool.
The American Cancer Society provides more information to help you understand your PSA levels.
Digital Rectal Exam
During a DRE, your doctor will feel your prostate with his or her finger. Doctors are looking for bumps or hard areas. An exam can help determine if cancer is on one side, both sides, or if it’s likely to have spread beyond the prostate. A DRE relies on the subjective impressions of the doctor conducting the exam.
During a TRUS, a small probe about the width of a finger is inserted into the rectum. Ultrasounds use sound waves to create echos and turn them into an image of the inside of your body. A TRUS is usually done at your doctor’s office or an outpatient clinic and only takes about 10 minutes. It feels weird, but shouldn’t be painful. If you do experience any pain, the doctor can numb the area.
A newer alternative to TRUS is a Doppler ultrasound. This measures blood flow within the prostate gland. Prior to a Doppler ultrasound, some doctors will inject you with a contrast agent.
Prostate Cancer Biopsy: The smaller malignant glands (acini) of prostatic adenocarcinoma (upper left) show invasion around and between the larger benign glands (lower right).
During a core needle biopsy, your urologist will insert hollow needles into the prostate to collect tissue samples. A transrectal biopsy goes through the wall of the rectum. A transperineal biopsy goes through the skin between the scrotum and the anus. It’s uncomfortable, but not painful. Your doctor will usually numb the area first and each sample is taken in a fraction of a second. The procedure usually takes about 10 minutes. Your doctor will usually give you antibiotics to take before the procedure to reduce the risk of infection.
Doctors sometimes use an ultrasound to view the prostate while taking tissue samples. They may also use an MRI. This helps the doctors make sure the tissue samples they are collecting are from areas they are concerned about.
Afterward you’ll be sore and may notice blood in your urine or from your rectum. Blood in your semen may persist for weeks after the biopsy.
Tissue from the biopsy is then examined under a microscope for cancer cells. The findings are written up in your pathology report. Because your prostate may contain cancer and the needles may not take a sample of that area of the biopsy, your doctor may do more than one biopsy if he or she is concerned about false-negative results.
The pathology report will say how many samples were taken and how many contained cancer. It’ll say what percentage of each sample was made up of cancer cells. It will also say if the cancer is on one or both sides of your prostate.
Some cells may appear abnormal, but not cancerous. These suspicious areas are called prostatic intraepithelial neoplasia (PIN). Low-grade PIN looks mostly normal, high-grade PIN looks mostly abnormal. When high-grade PIN is found, 1 in 5 men will have cancer somewhere in their prostate, so doctors will conduct another biopsy.
When atypical small acinar proliferation (ASAP) is detected, a few cells look cancerous, but there aren’t enough of them to be certain. Doctors will conduct another biopsy, usually after a few months.
Proliferative inflammatory atrophy (PIA) is when prostate cells are unusually small and there’s inflammation. It’s believed that PIA increases your risk for high-grade PIN or possibly prostate cancer.
The American Cancer Society has a guide to understanding your pathology report.
If your doctor suspects the cancer may have spread outside your prostate, they’ll use imaging to see. If the likelihood that your cancer has spread is extremely low, they may decide not to put you through the hassle, discomfort, and expense of testing.
Your Gleason score is a simple way to capture your cancer’s clinical stage and grade, using a number between 2 and 10. This is composed of your two Gleason grades. Normal prostate tissue is a grade 1, very abnormal tissue is a 5. Most cancers have a Gleason grade of 3 or higher.
Because prostate cancers have different areas with different grades, grades are assigned for the two areas that make up most of the cancer. The highest Gleason grade is always included, even if it’s just a tiny spot. These grades are then added together to form the Gleason score, or Gleason sum.
A Gleason score of 6 or lower is low-grade, 7 is considered intermediate-grade, and 8 to 10 is high-grade.
Lymph node biopsy
Sometimes a lymph node biopsy is done as a separate procedure, usually when the prostate is going to be left in place but it’s suspected that the cancer might have spread to your lymph nodes. With a laparoscopic biopsy a long tube with a camera and tools are inserted through small incisions in your abdomen. Recovery usually takes only a day or two and you’ll have very small scars. With fine needle aspiration (FNA) a sample of your cells from an enlarged lymph node will be taken using a long needle inserted through your skin. Your skin will be numbed with a local anesthetic. Generally, they’ll keep you in the clinic for a few hours after the procedure, but you should feel back to normal in a day or two.
Computed tomography scan
A CT scan makes cross-sectional images of your body using x-rays. This helps doctors see if the cancer has spread to your lymph nodes, pelvis, or organs.
Prostate cancer is known for spreading to lymph nodes and then the bones. Often it spreads to people’s lower spine. A bone scan is used to see if cancer has spread to your bones, before it causes damage and pain.
You’ll be injected with a small amount of radioactive material, which will settle in damaged areas of your bones. A picture is taken of your skeleton. This can identify suspicious areas, but doctors will use x-rays, CT scans, MRI scans, or biopsies to make a diagnosis.
Magnetic resonance imaging
An MRI scan uses radio waves and magnets to create a images of the soft tissues in your body. They’ll sometimes inject you with a contrast material, gadolinium, to see things clearer. An MRI can provide a clear picture of the prostate and the area around it. Sometimes they’ll insert a probe, an endorectal coil, into your rectum for the scan. You can opt to be sedated if they use the probe, as it can be very uncomfortable.
Deciding on a treatment regimen
Bring a notebook and take detailed notes when discussing treatment options with your medical team. Don’t be shy about asking them to repeat information or spell a term. You may even want to record the conversations, with their permission. Even incredibly smart people with excellent memories find themselves overwhelmed with information. It’s different when it’s your life they’re talking about. The American Cancer Society has a list of questions you should ask your doctor.
Getting a second or third opinion can seem exhausting, but it’s an excellent way to make sure you’re aware of all of your options and making the best choice for you. Your urologist, oncologist, and GP may all provide you with different information about risk factors and recovery time — they each have a different expertise and talking to all of them about the options gives you the most complete picture.
There are many factors to look at when developing a treatment plan. Doctors who have different opinions aren’t necessarily wrong, because there is rarely one right answer when it comes to treatment.
Do you have to act now?
Prostate cancer typically takes years to develop to the point where it’s detectable. You can take the time you need to make a decision about what treatment to pursue, as a few days or weeks is unlikely to change the outcome. It can be very upsetting when patients are told to wait a month for an MRI or for treatment to begin. While the waiting can be incredibly stressful, your treatment team knows it’s safe to not rush into action.
If you are elderly or in ill-health, it may be unlikely that prostate cancer will advance to the point where it’s a danger before you die from something else. In this case, you may be able to safely skip the side-effects of radiation and surgery. Instead, your doctors can make sure cancer symptoms don’t impact your quality of life. Cancer can be viewed as a chronic disease that can be managed.
If you have a slow growing cancer that’s been detected early, you may not need to treat your cancer right away. Some men can live with prostate cancer for decades before deciding to treat it. Some men may never need to treat their prostate cancer. Leaving prostate cancer untreated is not a death sentence or an act of suicide. You can talk to your treatment team about treatment options, side effects, and overtreatment and decide what you need to do to live the life you’d like to live.
When prostate cancer is detected before it has spread, it appears that surgery, external radiation, and brachytherapy all have similar cure rates. Newer types of treatment, like da Vinci robotic surgery and proton beam radiation, appear promising but have much less research and long-term data. This makes comparing treatment options as much art as science.
What’s important to you?
Do you need to act now and go big to fight against cancer? Are you comfortable putting off treatment and seeing your doctor regularly to monitor your cancer?
Do you need to know right away if surgery has removed all of the cancer? Are you comfortable waiting weeks or months to see if radiation works?
Do you want to choose treatment options that are well established and backed up by lots of research? Are you eager to go with the latest and most cutting-edge treatments?
How would you feel if you became incontinent, had bowel problems, or erectile dysfunction?
Do you have a support network in place to help you during recovery from surgery or during treatment? Are you in good enough health to be a candidate for surgery? Do you have other conditions or chronic illnesses that would complicate treatment?
Is the cancer likely to spread and cause you problems before you’d die of old age?
Every treatment carries certain risks and side effects. Even the most effective treatments overall may not be effective for you. Try to figure out which side effect profile you are most comfortable with. Remember that you and your family are the ones who have to live with the outcome of your treatment, not your doctor.
Prostate cancer patients who opt for active treatment will use a combination of therapies.
Common treatment options by stage
Radiation therapy or radical prostatectomy
External beam radiation and brachytherapy, alone or combined
||Combinations of external beam radiation, hormone therapy, brachytherapy, and radical prostatectomy
Hormone therapy, sometimes with chemotherapy
Combinations of external beam radiation, brachytherapy, and hormone therapy
Bone metastases treatments
Cancer treatment has come a long way — today’s treatments are more effective and have fewer side effects. However, treatment can still be difficult to endure and have a huge negative impact on your life. Many instances of prostate cancer advance very slowly, meaning the cancer will not spread or grow large enough to impact your life before you die from another cause.
If you have a non-aggressive cancer and it has not spread, many doctors will suggest active surveillance. So long as the cancer does not grow or spread, people can live their lives without the negative impact of cancer treatment. If the cancer eventually grows or spreads, you can work with your treatment team to choose how to respond.
With active surveillance, your doctor will typically run tests every 6 months. Tests often include your PSA blood test and a digital rectal exam. Doctors may perform annual biopsies. Even if you ultimately do undergo treatment, you can enjoy additional months or years of life without worrying about side effects. Men who undergo watchful waiting have the same life expectancy as those who pursue treatment immediately.
Some prostate cancer tumors are fed by testosterone, so by blocking it you can starve the tumors. This is through reducing hormone levels, also known as androgen deprivation therapy.
- Hormone therapy can be used before surgery or radiation to shrink the tumor
- Hormone therapy is used when the cancer has spread
- Hormone therapy and radiation may be used together to reduce the risk of cancer coming back
- Adjuvant hormone therapy reduces the chances of high-risk prostate cancer from coming back after a curative treatment
Hormone inhibitors may be pills, injections, or small implants under the skin. Lupron is one of the most common hormone therapy drugs. These keep the body from making hormone. Needles can be anxiety inducing, but the side effects are generally mild. Some people do have side effects that are serious enough that treatment will be stopped.
Hormone therapy tends to decrease in effectiveness after 2-3 years. In order to account for this, some oncologists will have you start and stop therapy. This is called intermittent androgen deprivation.
With an orchiectomy the testicles are removed through a small cut in the scrotum. Most of the male hormones are made in the testicles. This is an outpatient procedure with low risks of complications. However, after surgery men typically have very little sexual desire and aren’t able to have erections. Many men will have hot flashes afterward, which usually go away quickly, but may persist.
Side effects vary widely based on the hormone treatment used and how your body responds to it. Common side effects include loss of sex drive, impotence, hot flashes, shrinking of the penis and testicles, breast tenderness and growth, thinning bones (osteoporosis), weight gain, loss of muscle mass, and an increased risk of circulation problems.
The American Cancer Society has information on what treatment options are still available if your cancer does not respond to hormone therapy.
Radiation, or radiotherapy, uses high-energy x-rays to kill cancer cells. It can be used to shrink tumors, relieve symptoms, and reduce the spread of cancer.
People respond to radiation very differently. Some people find themselves overwhelmed with exhaustion and requiring significant help from family and friends. Other people continue to work through treatment. The fatigue subsides a month or two after treatment ends.
Radiation damages the cancer cells, but it also damages healthy cells nearby. The main short-term side effects of radiation include redding of the skin, diarrhea, and difficulty urinating. It’s not uncommon to see blood in your urine or stool. Some patients develop radiation cystitis. These side effects will usually go away shortly after treatment ends. Some people continue to experience problems with stool leakage even after treatment ends.
Radiation can cause bowel complications. It can also cause erectile dysfunction, although problems tend to develop in the future, rather than immediately, as with surgery to remove the prostate. Radiation can damage the nerves around the prostate, as well as the arteries that carry blood to the penis.
While undergoing treatment for radiation, your oncologist may advise you to not allow children to sit on your lap.
External Beam Radiation
EBR is typically a daily outpatient treatment. If you live near a cancer center, it could mean stopping by for 15 minutes a day. Treatment length can vary, but it’s typically around 7 to 9 weeks. In some cases, patients may need to undergo radiation as an inpatient procedure.
Imaging tests will be done to see where the cancer is, so the beams can be directed there. Radiation techs may mark the spot with ink or in another way. Two types of advanced radiation are 3D-conformal therapy (3D-CRT) and modulated radiation therapy (IMRT). These reduce the damage to nearby tissues. Some oncologists will use proton beam radiation, also called proton therapy, which uses proton beams instead of x-rays. This is thought to reduce damage to nearby tissues, although the evidence is currently inconclusive.
With high dose radiation (HDR), also known as brachytherapy or internal radiation therapy, radioactive material is inserted into your prostate to kill the cancer. Your surgeon will use a transrectal ultrasound, CT scan, or MRI to place the material in the right spot.
With short-term brachytherapy, tubes are inserted into the skin of the perineum and into the prostate. Your doctor will insert radioactive materials into the tubes, usually 3 times a day for 2 days. The treatment takes about 10 minutes each time.
With permanent brachytherapy, also known as seed implants, radioactive pellets are surgically inserted directly into the prostate. Up to 100 seeds, each the size of a grain of rice, are put into the tumor. They’ll give off radiation for weeks or months and over time will stop being radioactive. They typically don’t cause discomfort because the seeds are so small.
While you’re undergoing brachytherapy, you may need to stay away from small children, pregnant women, and pets. Some people experience burning, pain, or diarrhea, but these are relatively rare.
They can also use gel to physically move the prostate away from the other nearby organs, reducing damage to those organs.
This treatment option reduces the likelihood of impotence from alternate treatments, like the prostatectomy. Recovery is easier, compared to having your prostate removed.
High-intensity focused ultrasound
HIFU is relatively new to the US. It kills cancer cells with ultrasonic beams.
Chemotherapy is used to shrink tumors. It may be used on its own or it may be used to shrink tumors so they’re easier to remove with surgery. If the tumor can’t be removed, chemo can slow tumor growth and reduce symptoms, increasing your quality of life and lifespan.
Chemo may come as a pill or through an IV, or a needle in your vein. Since chemo goes through your bloodstream, it can damage cells throughout your body. Your oncologist will try to make the chemo strong enough to kill cancer cells without destroying too many healthy cells. Popular chemotherapies for prostate cancer include docetaxel (Taxotere) and cabazitaxel (Jevtana).
Prostate cancer patients may feel that chemo side effects aren’t as bad as they expect. There are many types of chemo, varying doses, and different frequencies, all with their own side effects. Common side effects include nausea, vomiting, hair loss, mouth sores, taste changes, and exhaustion.
Prostate cancer vaccine
Sipuleucel-T, or Provenge, is an FDA approved vaccine used to treat advanced prostate cancer that isn’t responding to hormone therapy. The prostate cancer vaccine is not mass-produced, so it’s made for each person who gets it.
Side effects typically only last a day or two, including fever, chills, fatigue, back pain, joint pain, nausea, and headache. Some men will experience problems breathing and high blood pressure.
Prostate cancer surgery has a high success rate, although the potential for side effects is high. The potential for incontinence and erectile dysfunction can cause major quality of life concerns and have a major impact on the self-esteem of prostate cancer survivors.
Regaining bladder control can take 6 months or more. You will have to exercise your bladder muscles to hold your urine, but you may experience leakage when your bladder is very full or when coughing or sneezing. Some men never fully regain control of their bladder. This can be managed through medication.
About 40% of men will not be able to achieve an erection, maintain an erection, or have a strong enough erection for sexual activity. You can start trying to have erections about 6 weeks after surgery. This is called penile rehabilitation. Loss of the ability to have an erection may not be permanent, as it may come back after as long as two years. Generally, the younger and healthier you are, the more likely it is that you’ll be able to maintain erections after prostate surgery.
Ejaculation becomes impossible after surgery, but this doesn’t mean you can’t have an orgasm. In fact, you can orgasm without having an erection. There are a variety of medications and devices that can help you resume an active sex life after prostate surgery, with or without erections.
Some factors make certain people more likely to need radiation in addition to surgery or even after surgery.
Like any surgery, the use of anesthesia and pain medication carries risk. All surgeries carry the risk of infection.
When surgeons talk about ‘radical’ surgery, they’re talking about ‘the root’ — meaning that a radical surgery removes the entire tumor and some of the tissue around it.
With retropubic surgery, an incision will be made in your lower belly. During retropubic surgery, your doctor will remove lymph nodes near the prostate to check them for cancer. Sometimes doctors will check the lymph nodes for cancer right then, called a frozen section exam. If they do contain cancer, your doctor may not remove the prostate and will instead talk to you about other treatment options. Usually the lymph nodes are simply removed and sent to a lab to be examined later.
If the bundle of nerves on either side of the prostate, which are needed for erections, have not been impacted by the cancer, your surgeon will leave them. This is what they mean when they talk about ‘nerve sparing’ surgery. Nerve sparing surgery does not guarantee that you’ll be able to have and maintain an erection after surgery, but it does improve your chances.
With perineal surgery, your doctor will make an incision between your scrotum and your anus, known as the perineum. This type of surgery is more likely to damage your nerves, but it is often a shorter operation.
With laparoscopic surgery, your surgery will be done through several small cuts, usually 4 small incisions in the abdomen. A camera and special instruments will be used to remove your prostate. The da Vinci system and SMART surgery are two types of robotic-assisted laparoscopic prostate removal.
After a radical prostatectomy, you’ll usually have a catheter for about a month. You’ll also experience pain after surgery, but your treatment team should be ready with a pain management plan to keep you comfortable during recovery.
You may be given postoperative radiotherapy (XRT). XRT increases survival rates in high-risk prostate cancer patients. Internal soreness from XRT can last months, either from the radiation itself or scar tissue forming from surgery. People with XRT are also more prone to UTIs, so it’s important to stay hydrated.
With cryosurgery, also called cryoblation, your tumor is killed by freezing it. Long, thin needles are inserted into your perineum and into the tumor. They’re then filled with very cold gasses, freezing the tumor. The surgeon will use a transrectal ultrasound (TRUS) to guide the needles into position. Men who undergo cryosurgery are more likely to experience erectile dysfunction.
Transurethral Resection of the Prostate
TURP does not treat the cancer, but it does make it easier to live with the cancer. Some tumors grow to block the urethra, making it difficult or impossible to urinate. This surgery removes the blockage. This is a good option for men who aren’t able to have a radical prostatectomy and are having difficulty urinating.
AJCC TNM staging
The American Joint Committee on Cancer TNM staging system describes how far the cancer has spread. It’s made up of:
- The primary Tumor
- The status of the lymph Nodes
- Whether the cancer has Metastasized
- The PSA level at diagnosis
- The Gleason score
The clinical stage is based on your doctor’s estimate from the DRE, lab tests, biopsy, and imaging. If you’ve had surgery, the doctor can determine the pathologic stage.
- T1: No tumor can be seen or felt
- T1a: Cancer is found during a TURP and is less than 5% of the tissue
- T1b: Cancer is found during a TURP and is more than 5% of the tissue
- T1c: Cancer is found by needle biopsy
- T2: The tumor can be seen and/or felt, but is confined to the prostate
- T2a: The cancer is in one half or less of one side of your prostate
- T2b: The cancer is more than one half of only one side of your prostate
- T2c: The cancer is in both sides of your prostate
- T3: The cancer has grown outside of your prostate
- T3a: The cancer is outside the prostate, but not in the seminal vesicles
- T3b: The cancer is in the seminal vesicles
- T4: The cancer has spread to your urethral sphincter, recutm, bladder, and/or pelvis
Lymph node staging
- NX: Lymph nodes have not been tested
- N0: Cancer has not spread to any nearby lymph nodes
- N1: Cancer has spread to one or more nearby lymph nodes
- M0: Cancer has not spread beyond nearby lymph nodes
- M1: Cancer has spread beyond nearby lymph nodes
- M1a: Cancer has spread to lymph nodes outside your pelvis
- M1b: Cancer has spread to your bones
- M1c: Cancer has spread to other organs
You can view the TMN classification for prostate cancer on Medscape.
Stage I prostate cancers are small and fully contained in the prostate. They have a low PSA level and a Gleason score of 6 or less. They grow slowly and may never cause any symptoms or health problems.
If you are young and healthy, you may opt for watchful waiting, knowing you may need to treat your cancer at some point in the future. Some people want to treat their cancer right away and go forward with radiation therapy or have their prostate removed. Men who are elderly or in ill health often choose to monitor their cancer and may escape having to ever treat it.
Stage II prostate cancers are still contained in the prostate, but are more aggressive. They are larger, have higher Gleason scores, and have higher PSA levels. Stage II cancers are more likely to eventually spread and cause symptoms.
Active surveillance is still an excellent option for Stage II cancers, especially when it’s not causing any symptoms. Men who are elderly or ill often choose to skip treatment, as they are unlikely to suffer any ill effects from the prostate cancer.
Men who are young, healthy, and/or want to treat their cancer may decide to have their prostate removed or treat the cancer with radiation.
At this point, the cancer has spread outside the prostate, but it hasn’t gone very far. At this point, most people will have their prostate removed, get radiation, or have hormone therapy. While it hasn’t yet spread to lymph nodes, it’s now considered more likely to come back after treatment, even if it’s successful. Some people with stage III prostate cancer will still decide that watchful waiting or less aggressive treatment is the best choice for them.
Stage IV prostate cancer has spread out of the prostate and into other areas. It may be in your bladder or rectum, to nearby lymph nodes, or in other organs. Any place the cancer has spread outside of your pelvis is considered ‘distant.’ Your experience and prognosis will be very different, depending on how far the cancer has spread and where it has metastasized.
While sometimes stage IV prostate cancer can be cured, most of the time you will have cancer the rest of your life. Many men live with incurable prostate cancer for years and can continue enjoying their lives. At this point, most doctors will aim to shrink the tumors and keep the cancer from spreading further. They will also provide you with treatment in order to improve your quality of life — so you can continue spending time with your family, working, and enjoying hobbies — and make sure you aren’t in pain.
Prostate cancer nearly always spreads from the lymph nodes to the bones. Once cancer has spread to the bones, it can cause fractures, breaks, and intense pain. If you have extreme pain in your lower back or hips, you should go to the ER immediately. Doctors can help stabilize your bone structure and manage your pain. The American Cancer Society has information on managing cancer pain.
Bone metastasis, while serious, it is not likely to kill you. People can live for years after cancer has metastasized in their bones. High blood calcium levels can be dangerous.
There are specific treatments for prostate cancer once it’s reached your bones.
Bisphosphonates slow down bone cells called osteoclasts. Osteoclasts can become overactive when you have prostate cancer, so bisphosphonates can help relieve pain and high calcium levels, slow the growth of cancer, and help strengthen bones if you’re getting hormone therapy. The most common bisphosphonate is zoledronic acid, or Zometa. You’ll get this through an IV about once a month, along with supplements for calcium and vitamin D.
Bisphosphonates can leave you feeling like you have the flu. They may aggravate any joint or bone pain you’re already having. They can also cause kidney problems, so make sure your whole treatment team knows about any kidney problems you might have.
The most serious side effect from bisphosphonates is osteonecrosis of the jaw (ONJ). This is rare, but can lead to tooth loss and jaw infections, so you should have a dental checkup before you start treatment. You should not have any dental work done during treatment and you should carefully floss, brush, and get regular dental checkups. You can learn more about ONJ from the team at Savor Health.
Denosumab, also known as Xgeva or Prolia, also blocks osteoclasts. It can help prevent fractures and slow the spread of cancer. It’s frequently used for men when bisphosphonates and hormone therapy aren’t working as well as they should. It’s typically injected once a month, along with calcium and vitamin D supplements. Denosumab can cause nausea, diarrhea, and leave you feeling exhausted. It also puts you at risk for ONJ.
Radiopharmaceuticals kill cancer cells in your bones. They’re administered through an IV and settle into damaged areas of your bones, so they reach cancer in your bones throughout your body. The most common radiopharmaceuticals are strontium-89 (Metastron), samarium-153 (Quadramet), and radium-223 (Xofigo). These drugs decrease your blood cell count, which puts you at risk for infections and you have to be very careful about bleeding. Different drugs can cause different side effects, so ask your treatment team what to expect.
In order to gain FDA approval, treatments must go through clinical trials. Clinical trials give you access to the latest treatment options and methods of controlling side effects. However, there’s no guarantee that these treatments will work, be worthwhile, or be safe. Your doctor can help you decide if the risk of a clinical trial makes sense for you.
Cancer.net is an excellent resource for learning about how clinical trials work and finding clinical trails recruiting participants.
Half of all adults in the US have a chronic disease or condition. Other conditions may limit your ability to tolerate treatment options and make certain procedures unsafe for you.
Your treatment team will let you know how your concurrent conditions impact your cancer and treatment options. If treating or managing both simultaneously isn’t an option, your doctors will generally treat whichever condition is the most serious.
Prostate cancer is slightly less common in men with diabetes. Some diabetes drugs have even been shown to aid prostate cancer treatment. However, other studies show that men with diabetes have more serious cases of prostate cancer.
Men with heart disease are more likely to experience bowel and urinary problems after prostate cancer treatment. Androgen deprivation therapy (ADT), also known as hormone therapy, may increase your heart attack risk.
Choosing a medical team
Prostate cancer is very common. Any large hospital will have an excellent staff, capable of providing you with top-level prostate cancer treatment.
If you decide to treat your prostate cancer, you will likely use several types of treatment, each with its own specialists. You may also require various experts to help you manage symptoms and treatment side effects.
Your treatment team
General practitioner or family doctor
Your GP will continue to provide support and information, although he or she will likely take a back seat to your oncology/urology team. Your GP can be a fantastic resource for managing other conditions you have, as well as managing side effects.
Urologists are specialists in the urinary tract and reproductive organs. This includes the urethra, bladder, and kidneys. This includes treatments for cancer, incontinence, and sexual function.
If you’re about to go to your first urology appointment, you can learn what to expect.
It’s common for urologists to perform surgery:
- Transurethral resection of the prostate
- Transurethral needle ablation of the prostate
- Sling procedures
- Opening blockages or making repairs
A urologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. A urology resident is undergoing this training in a hospital, but has already completed medical school. Urologists are certified by the American Board of Urology after completing a certification exam.
A urologic oncologist is a urologist who specializes in cancer care. They treat:
- Masses or tumors of the adrenal glands
- Kidney masses, cysts, or cancer
- Bladder cancer
- Prostate cancer
- Testicular cancer
- Penile cancer
A urologic oncologist has completed all of the requirements to become a urologist and then completed an additional year or two of training in urologic oncology. A urology fellow is undergoing this additional training. Urologic oncologists are certified urologists; there is currently no additional certification for their specialization.
An oncologist is trained to diagnose, stage, and treat cancer. They specialize in using chemotherapy and hormone therapy. Your medical oncologist is often the best person to talk to when deciding on the right treatment for you. Your oncologist keeps up with the latest research and can connect you with clinical trials. Typically, your oncologist will be the point person for your cancer care and will coordinate with the rest of your medical team.
An oncologist can also help you manage symptoms and side effects. Your oncologist will also typically be the one to start palliative care or hospice care.
A medical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They are then licensed by the state to perform medical oncology.
A radiation oncologist specializes in treating cancer with radiation. They can also help you choose between your treatment options and manage your side effects and symptoms.
A radiation oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. They must pass an exam from the American Board of Internal Medicine. Radiation oncologists must pass an exam to be certified by the American Board of Radiology. Certification must be renewed every 10 years.
A surgical oncologist performs biopsies as well as removing tumors. They are critical for staging your cancer as accurately as possible.
A surgical oncologist has completed a 4-year college degree, 4-years of medical school, and then 4-5 years of medical training at a hospital. Surgeons who specialize in oncology are tested and certified by the American Board of Surgery.
A pathologist performs and interprets imaging tests, like x-rays, ultrasounds, and MRIs, to diagnose and monitor your cancer. They also examine tissue samples. They are important for making treatment recommendations.
A pathologist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They are certified by the American Society for Clinical Pathology. A pathologist who has a specialization has undergone an additional 1-2 years of training.
A pain management specialist can evaluate, diagnose, and treat pain. There are a huge variety of types of pain, causes, and treatment options. A pain management specialist may also coordinate physical therapy, psychological therapy, and rehab.
A pain management specialist has completed a 4-year college degree, 4-years of medical school, and then 4 years of medical training at a hospital. They then completed at least one year of additional training in pain management. They may be certified by the American Board of Anesthesiology, The American Board of Psychiatry and The American Board of Neurology, or the American Board of Physical Medicine and Rehabilitation.
Nurses are a tremendous resource for education and support. They are often the primary point of care, rather than a doctor. Many nurses specialize in a certain type of care, such as in oncology or urology. A nurse may monitor your condition, prescribe medication, and administer treatment.
A nurse (RN) has completed a 4-year college degree and passed the National Council Licensure Examination (NCLEX). An oncology nurse (OCN) has worked as a nurse for at least one year, with 1,000 or more hours in oncology, and been certified by the Oncology Nursing Certification Corporation.
X-ray & radiology technician
An x-ray tech, or radiologic technician, uses special equipment to take images of the inside of your body. These images are then ready by a radiologist or pathologist.
An x-ray tech (RT) may have a 2- or 4-year degree run by a program accredited by the Joint Review Committee on Education in Radiologic Technology (JRCERT) or The American Registry of Radiologic Technologists (ARRT). Certification by ARRT is not mandatory, but most medical centers require it. Most states also require that x-ray techs are licensed.
Oncology dietitian nutritionist
A registered dietitian who is a certified specialist in oncology nutrition (RD CSO) can help you manage the side effects and symptoms of prostate cancer and treatment. You can learn more about what to expect when working with an oncology dietitian and how to get the most out of working together.
Remember that anyone can call themselves a nutritionist. An RD has a 4-year college degree, 6-12 months of supervised training, and is certified by the Academy of Nutrition and Dietetics and Commission on Dietetic Registration. An RD CSO has 2,000 additional hours of oncology training and passes a certification exam every 5 years. Some registered dietitian nutritionists refer to themselves as RDs, others use the term RDN. They both indicate the same training and certification.
A pharmacist is an expert in knowing what each cancer medication is used for, potential side effects, and potential interactions. Your pharmacist knows all of the medications you take, as well as any supplements, so they may catch potential problems when different specialists prescribe medications that may interfere with each other or cause problems for other reasons.
A pharmacist completes both a 4-year undergraduate and a 2-year graduate degree. They are then licensed by the state.
Physical therapy can help prostate cancer patients maintain strength, mobility, and function. With prostate cancer it can help offset bone weakening from hormone therapy.
Physical therapist assistants have a 2-year degree. A physical therapist will have a master’s degree or a doctoral degree from an accredited program. They are then licensed by the state.
Oncology social worker
A social worker can provide a wide range of counseling services and support for prostate cancer patients and their families. An oncology social worker will connect you to resources, help navigate health insurance coverage, and support you as you cope with the emotional aspects of cancer.
A social worker has a bachelor’s and master’s degree (MSW). They must pass the Association of Social Work Boards exam and meet other requirements to be licensed by the state.
The healthier you are, the better your chances are of beating cancer. Eating nutritious foods can help you manage side effects, reduce fatigue, and maintain your strength. Keep exercising, or start now.
While eating healthy is important, this isn’t the time to dramatically change your eating habits. If you suddenly go vegan or start juicing obsessively you can put yourself at risk for nutritional deficiencies — plus, you’re making your life more complicated during a difficult time.
This is a great time to start introducing small changes to what you eat to make things healthier. Eat a little less meat and a little more veggies. Substitute unhealthy snacks with a homemade version or a healthier option. The Savor Health website has lots of tips on how to do this and our cookbook has 150 recipes for you to try.
This is the time to stop smoking and cut back how much alcohol you drink.
Learn more about using what you eat, and how you eat, to manage your treatment side effects.
Exercise has been linked to an increased survival rate for some cancers, like breast cancer and colorectal cancer. While it hasn’t been specifically studied for prostate cancer, which already has a very high survival rate, evidence suggests it could be helpful. Studies suggest brisk walking has a positive impact on prostate tumors. We know that people who are active have a lower rate of aggressive prostate cancers.
Learn more about how you can safely get fit, and stay fit, as a cancer patient.
CBD oil, or cannabis oil, has become a popular home remedy for treating prostate cancer. Most people who use CBD oil also get traditional treatment for their cancer. Unfortunately, there have not yet been reputable studies on its use as a treatment.
This experimental treatment is only legal if medical marijuana is legal in your state and you follow proper procedures.
It’s important to keep doing the things you enjoy. Make new happy memories. Stay in touch with your close friends. Spend quality time with your family. Remember what you are fighting for; your life is more than just healthcare.
You’re very likely to develop prostate cancer, but it’s not likely to kill you. Of people who are diagnosed with prostate cancer, this is how many of them are alive in 5, 10, and 15 years:
Even when prostate cancer is incurable, you can live for a very long time with a terminal illness.
People who are diagnosed with prostate cancer that is contained within the prostate or has spread to nearby areas have a 5 year survival rate of nearly 100%. Once the cancer has spread to distant lymph nodes, bones, or other organs, 1 in 3 men will still be alive in 5 years.
Of course, you aren’t 1 in X people, you’re an individual. Statistics can give you an idea of what to expect, but every person’s experience is unique. This is why your doctor may be reluctant to give you a clear idea of how long you have to live, your odds for successful treatment, and what to expect — there’s no way to know for sure what will happen to you.
Cancer treatments are improving all the time. 1 in 3 men diagnosed with prostate cancer in 1975 did not live to see 1980. Your odds are a lot better today.
Living with cancer: Quality of life
Having cancer doesn’t mean you’ll be in pain. When you do experience pain, your treatment team can help you relieve it. There’s no need to be stoic — your doctors and nurses are there to keep you comfortable.
Many people are concerned about becoming addicted to pain medications. This is incredibly rare among prostate cancer patients. Talk to your doctor or pain management specialist about your concerns.
Blocking testosterone can increase the natural process of bone loss due to age, causing potentially serious problems. After having hormone therapy or an orchiectomy, you should make sure to get plenty of calcium and vitamin D. Your doctor or oncology dietitian can help you determine the right amount. Radiation therapy and certain types of chemotherapy can also decrease bone density. Your doctor can measure your bone density and provide you with medications.
You should not get more than 1,500 mg of calcium a day. Two servings of dairy a day will generally provide plenty of calcium without providing too much.
Stress and uncertainty
Living with the symptoms of cancer, treatment side-effects, and stress of dealing with a potentially deadly disease can be incredibly stressful.
Connecting with other patients and survivors can be incredibly helpful when dealing with the uncertainty of living with cancer. Most hospitals have support groups for cancer patients. Large hospitals will have groups specifically for prostate cancer. Even if support groups aren’t your style, get in touch with other people who’ve experienced prostate cancer in whatever way you feel comfortable.
Sex and masculinity
Prostate cancer’s impact on your ability to have sex the way you’re used to having it can be incredibly distressing. It can be helpful to talk to a counselor or psychiatrist who specializes in sexuality. Men find that they feel generally unhappy with life or less like themselves when their sex life changes dramatically for the worse.
Hormones have a huge impact on how you feel about yourself and your personality. Hormone therapy dramatically changes your hormone levels. It can also change the way you look and your sexual desire. Talk to your treatment team about the side effects and how you can cope. The side effects of hormone therapy have a huge impact on the traits men associate with their masculinity: virility, libido, strength, and endurance. It can be shocking for a man who’s had a high sex drive and an active sex life to suddenly find himself without any libido. Our sexuality is an important part of how we view ourselves.
Depression is a common side effect of hormone therapy, so don’t be ashamed to ask for a referral to a psychiatrist as soon as you start to feel down. You may also experience problems concentrating or remembering things.
Any prostate cancer treatment can make it more difficult for you to get and maintain an erection, not just surgery. In fact, 4 years after surgery, the rate of men who report ED is the same for both radiation and surgery. Doctors don’t understand why some men lose their ability to have erections while others don’t.
Some doctors believe that it’s important for men to get erections soon after surgery, often with the help of medications such as sildenafil (Viagra), tadalafil (Cialis), or vardenafil (Levitra), to keep the tissue healthy. You can also use penile injections or vacuum devices to create an erection. It is thought that the increased blood flow to the penis helps the nerves heal, even if you aren’t able to get an erection. Many men find that they can orgasm without an erection. You can please your partner without requiring penetration.
Regardless of your ability to get an erection, you can still be sexual. Sexual touching, alone or with a partner, can help you feel like yourself and learn to feel comfortable with the changes your body is going through. Remember that you and your partner are going through a lot of stress and that changes in sexual desire may have nothing to do with appearances or skill. Talk to your partner and your urologist about your options.
You can learn more from the American Cancer Society’s guide on sexuality for men with cancer.
Incontinence and urine leakage
Incontinence and urine leakage is a temporary side effect for most men, but sometimes it’s here to stay. Up to half of men experience leakage a year after surgery. More experienced surgeons have lower rates of incontinence after surgery. It’s no shock that incontinence is a huge psychological burden.
Thankfully, most men who experience incontinence are able to regain control through pelvic muscle exercises, bladder control techniques, biofeedback, electrical stimulation, and medications. Avoiding caffeine can also help.
Some men work through prostate cancer treatment, while others are unable to continue working. This depends on what sort of career you have and how flexible it is, as well as what treatments you choose and how your body responds to treatments.
If you aren’t in pain or are able to manage your pain with medications that don’t interfere with your ability to think clearly, you may be able to continue working. You may find that you need to take breaks throughout the day because you have less energy.
Survivorship and preventing recurrence
Cancers that can’t be cured can often be managed like a chronic illness. Even when your cancer is cured, many cancer survivors are worried about it coming back. Learning to live with cancer can be very stressful.
Your treatment team can work with you to develop a survivorship care plan. This plan should outline what sort of follow-up tests are necessary and a schedule for monitoring your cancer status. It should clearly explain what side effects may last or even start after treatment has ended. Some treatment side effects appear years after treatment. Your doctor should explain what symptoms you should look for as a sign of recurrence or related health problems. It should also explain dietary changes and exercise regimens that can help reduce your risk of the cancer coming back. Cancer survivors have worse diets than people who’ve never had cancer.
Doctors commonly recommend PSA tests every 6 months for the first 5 years and once a year after that. Your treatment team may also recommend bone scans or other imaging tests. Prostate cancer may recur years after treatment, or you may develop a secondary cancer. Men who’ve had prostate cancer are more likely to get small intestine cancer, bladder cancer, thyroid cancer, thymus cancer, and melanoma. If you’ve had radiation, you are more likely to get rectal cancer or acute myeloid leukemia. This makes monitoring and follow-up care especially important.
It’s important to keep copies of your medical records. You will need these to make sure your treatment team always has access to the information they need, when they need it. Be sure to look over your medical records to check for missing information and errors.
For family, friends, and other caregivers
Talking about medical problems can be difficult for many men, so when it’s connected to their sexual function, it certainly doesn’t get any easier.
Caring for someone with prostate cancer
If someone you care about has prostate cancer, the first step is to talk to them and see how they’re doing. This can give you an idea of how you can support them. Remember, you can’t save your loved one. He’s still able to make his life choices and everyone is best off when those choices are respected.
Some people are eager for help researching their health and having company and support for doctors visits. Others aren’t. Don’t force it. On the other extreme, there’s no need to make cancer a forbidden topic. Pay attention to his response when you ask questions to see when your attempts to be helpful feel like prying and nagging.
People with prostate cancer often appreciate help around the house, with meals, with errands, and transportation to and from appointments. Walking the dog and helping with childcare can be a wonderful way to help.
Don’t turn your relationship into a chore. Keep doing the things you love to do together, even if you have to modify them or get creative. Dying of cancer is difficult, but this will not be a totally bleak experience. There is still joy ahead, even in the dying process.
One important thing is to not turn to the patient for support in dealing with your own struggles with their illness. You don’t need to keep a happy face all the time — in fact, you shouldn’t — but it’s best to seek outside support. Talk to your other friends and family members about how you feel. If your emotions are interfering with your life, or even if they’re not, working with a professional counselor can be incredibly helpful.
What kind of support do prostate cancer patients need?
When friends and family hear someone they care about has been diagnosed with cancer they want to help, but many people aren’t sure how to help.
Many men resist going to the doctor, even when they know something is wrong. Congratulate him on being brave and proactive about his health. Acknowledge that getting a cancer diagnosis is terrifying, but that most men with prostate cancer either never have to treat it or are successfully cured. There’s no need to start planning any funerals.
Don’t pressure someone to talk about their feelings. Let people know you’re there and ready to listen, if and when they want to. The most important thing is just being there. Do fun things together — and keep him company for the not-so-fun things.
Don’t force him to get healthy. Radical changes in diet and exercise can be traumatic when so many other things are going on. If you’d like to help him eat healthier, find healthier recipes of the foods he loves rather than trying to force him to eat different foods. That includes junk food. Sneak in a few more veggies. If he drinks lots of soda, help him to cut back gradually and experiment to find alternatives he enjoys drinking.
Don’t let cancer take over his life. Help him stick to his normal routine, hobbies, and activities as much as possible. Encourage him to continue doing the things that give his life meaning.
If you spend a lot of time with someone, you may notice that they’re not feeling well before they do. You may also spot side effects and other signs that something’s wrong. Check in to see if he’s feeling alright and encourage him to talk to his doctor or even seek emergency treatment if symptoms are serious enough.
Remember that it’s his body and his life. Express your concerns, but respect his decisions. Be sure to give him a chance to talk to his treatment team privately. That’s normal and doesn’t mean he’s trying to exclude you from his support team.
Getting a prostate cancer diagnosis can be incredibly stressful, in part because it takes so long to get an official diagnosis. Waiting weeks or months to determine whether or not he has cancer, what stage it is, and what treatment is necessary is incredibly stressful.
Sometimes distraction is the best plan of action. Throwing himself into work or other projects doesn’t mean he’s in denial.
Remember that ultimately any treatment decisions are his decision. You can express your concerns and opinions, but once he makes a decision it’s your place to support him. There is never a single correct course of action in medicine, so whatever decision he makes is the right choice for him.
And, it’s a cliche, but don’t forget to take care of yourself. There are tools to help.
When not in treatment
Even when someone is not undergoing treatment, knowing he’s living with cancer can weigh heavily on his mind.
- Be around to listen
- Don’t forget to do the things you normally do together
Don’t forget to treat him like a normal person. He’s not just an inspirational cancer fighting figure, he’s still the person he’s always been.
- Giving rides to and from appointments
- Help carrying out doctor’s advice, if they’re open to it
- Help make sure he’s eating enough and staying hydrated
- Help with household chores and yard work
- Help caring for children and pets
- Preparation of healthy meals and snacks
- Be there to listen
- Do things together, even if it’s just watching TV together
Getting back to normal after prostate cancer can take months — or years. Some people never feel like their old selves again, which can cause feelings of grief as they adjust to their new lives.
- If he is dealing with incontinence, choose seats and activities where there is easy bathroom access
- Giving rides to and from appointments
- Help carrying out doctor’s advice, if they’re open to it
- Help make sure he’s eating enough and staying hydrated
- Help with household chores and yard work
- Help caring for children and pets
- Preparation of healthy meals and snacks
- Be there to listen
- Do things together and help him get back to his normal activity level
As a survivor
Prostate survivors may find themselves worrying about the cancer coming back. They may still be coping with long-term effects of treatment and cancer, even as survivors.
- Find ways to make reducing the risk of recurrence fun, like cooking together or going for a hike
- Show compassion for his experience and support him
Some men will live for years with terminal cancer. This can be incredibly difficult for families and friends to cope with. Knowing that someone will die of cancer and experiencing the rollercoaster of treatment success and failure can be devastating. Nothing can prepare you for the emotions of dealing with a long-term illness.
Therapy and other professional support isn’t just for patients. Don’t hesitate to get support for yourself.
Hospice & palliative care
Many families find that calling in hospice care early is a wonderful support system. Many hospice programs provide:
- Visits from a nurse to answer questions and make sure the patient is comfortable.
- Visits from a health aid to help with bathing and other tasks.
- Assistance with acquiring and giving pain medications and other prescriptions.
- Access to social workers and chaplains to help the patient and family prepare for the end of a life.
A home health aid can help you with bathing, toileting, and other tasks family members may be uncomfortable doing. Getting outside help is a great way to allow you to focus on being a family, rather than healthcare and personal care providers.
Understanding risk factors for prostate cancer
Prostate cancer is rare among men under the age of 40. The average age of diagnosis is 66.
African American men are more likely to develop prostate cancer. Native Americans and Asians have a lower rate of prostate cancer.
Men who have a father or brother with prostate cancer also have a higher risk of developing prostate cancer.
If prostate cancer runs in your family
Screening for prostate cancer
If you have a family history of prostate cancer, you should start getting screened 5 years before the youngest first degree male relative was diagnosed. If there’s a genetic mutation involved, you should start getting screened no later than the age of 40. Genetic counseling is recommended if 3 or more relatives had aggressive prostate cancer or if there is a family history of breast, ovarian, or pancreatic cancer. When possible, family members with cancer are tested first.
These are just general guidelines, so you should talk to your primary care physician to determine when is the best time to start screening and discuss a referral to a genetic counselor.
Preventing prostate cancer
Unfortunately, prostate cancer has not been clearly linked to any preventable risk factors. Some cancers have well documented causes, prostate cancer does not. Cancer Research UK has an excellent guide to known and possible factors influencing your risk of developing prostate cancer.
Evidence suggests that maintaining a healthy weight reduces your risk of developing prostate cancer.
Eating a plant-based diet providing a range of nutrients and getting regular physical activity can reduce your risk for developing cancer in general, although we don’t know that it can reduce your chance of developing prostate cancer specifically.
Other prostate cancer resources
Prostate cancer guides
My Prostate Cancer Roadmap – Janssen Biotech, Inc.
Diet, Nutrition, Physical Activity and Prostate Cancer – World Cancer Research Fund International
After Diagnosis: Prostate Cancer – American Cancer Society
What’s new in prostate cancer research? – American Cancer Society
Harvard Prostate Knowledge: Patient Perspectives – Harvard University
Urological Care Foundation
National Association for Continence
Prostate Cancer Foundation
The Caregiver Space
ZERO: The End of Prostate Cancer
Men Who Speak Up
Prostate cancer blogs
MaleCare: Advanced Prostate Cancer
Invasion of the Prostate Snatchers
Living with Prostate Cancer
Prostate Cancer InfoLink
The Palpable Prostate
Yet Another Prostate Cancer Blog
Originally published on Savor Health
It’s rare when there’s a gift that’s perfect for 99.9% of any group of people, especially one as diverse as caregivers. But there’s one gift nearly ever caregiver is hoping you’ll give them:
We’re hoping you’ll call and say:
- You’re free this weekend and would love to keep an eye on mom.
- You can take her to the doctor’s the next few appointments.
- You’re running to the store and would be happy to pick up whatever I need.
- You’re going to come mow the lawn this week, so what time works for me?
Those gifts are difficult to wrap, though. Here are our suggestions for something you can put under the tree.
From the relaxing to the irreverent, there’s quite a selection of adult coloring books to choose from. They’re a great way to relax, as well as keep care recipients entertained
There’s a wealth of information out there about caregiving written by people who’ve been there, done that. Just be sure your attempt to help doesn’t come across as criticism.
Inspiration and affirmations
We all have days when we need something to pick us up and keep us going. These books have real words of hope and motivation from other caregivers.
Time for introspection
Journaling is both a wonderful activity for caregivers of parents or grandparents and a way to wind down after a long day. Caregivers so often get wrapped up in putting one foot in front of the other that we lose sight of the big picture.
A great companion gift is the promise to help out for an hour or two every week to give them time to write.
Peace of mind
Caregiving is incredibly emotionally difficult. As someone who hasn’t been a caregiver, it can be difficult to understand, but that doesn’t mean you can’t be supportive. Pair a helpful book with plans to get together and just chat, as well as the offer to help them run an errand or two each week.
Caregiving can both strengthen and challenge relationships. Here are some tools to bring people together.
A good rest
It’s tough to get a good night of sleep with constant interruptions and so many things to worry about.
We’d love you to be there each day to give us a hand and some support, but there are other ways to let us know you’re thinking of us every day.
I’m generally not a fan of gift cards, as I either fail to actually use them or end up buying things I don’t really want. Gift cards to places you know they shop at — be it their favorite store or something practical like their local grocery store, pharmacy, Amazon, and Target. See if they’d like a cleaning company sent over once a month or a laundry service. See if they’d like to be signed up for a meal delivery service. Don’t just ask “what do you need?” ask if x, y, or z would be better for them.
If you don’t have the money, perhaps you have the time to help them run errands, keeping the care recipient comfortable for a few hours, or cleaning up the yard. Sure, maybe you’re not up for the hands-on part of family caregiving, but we all have those things on our list we just can’t get to. There’s the porch that needs a fresh coat of paint, the light fixture that needs to be replaced, and all those other chores that pile up. Lending a hand at the things you’re good at would be much appreciated.
Caregivers make up the 65 million Americans who selflessly give their time, energy and resources to care for loved ones. From sick spouses, and children with special needs to aging parents or relatives with handicaps. Caregivers are the ones who sustain our communities, but who will support them?
The Caregiver Space is a dedicated online space for exhausted caregivers to safely express themselves, find emotional support and the tools they need to live healthier lives.
You know how hard caregivers work. Sending a caregiver a note of encouragement and support can make a big impact on their day.
Are you a caregiving expert? We’re always on the lookout for qualified experts – with both official accreditation and real world experience – who can write articles to guide caregivers.
Tell a caregiver about our site
What caregiver has enough support? Everyone can use a little advice and encouragement. You can help us build a stronger community by letting other caregivers know we’re here for them.
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Giving Tuesday is an opportunity to consciously vote for the non-profit organizations you value. Consider supporting caregivers this Giving Tuesday.
Your dollar matters. Vote with it by donating to The Caregiver Space.
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We’re thrilled to announce a new partnership that will bring The Caregiver Space’s resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and appear on many stories on the site, allowing us to get many more people involved with our organization.
The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.
Here’s an example of the kind of stories on The Mighty: What Nobody Tells You About Self-Care
We’re dedicated to providing comprehensive and support for people with caregiving in their lives. With this partnership, we’ll be able to help even more people.
We encourage you to submit a story to The Mighty and make your voice heard.
As caregivers, we spend a lot of time with the person we’re taking care of. Sometimes that leads us to neglecting other relationships…and sometimes the time is never quite right to say what we’ve been meaning to say.
Here’s what our community members wish they could say to someone they love, in 5 words:
I got my bachelor’s degree. To my dad. Quitting school was the one thing about which I felt I’d let him down. – S.S.
I understand and forgive you. – S.L.
I’m sorry I hurt you. – T.M.
I value your love Mom. – S.S.
I love you so much. – K.E.
Why do you do this? My dad never calls or talks to me. What did I do wrong? – J.D.
‘I love you’ to my dad…we never said this to each other. – J.E. & D.B.
“We finally planned our wedding-date” to my Nana, she helped raise me and passed on May 2nd 2015. She will not get to see get married. – D.Y.
You tried your best, Dad. – J.W.
I love you. I’m sorry. – F.H.
Thank you grandpa and grandma!!! – A.S.
You were always my hero. – C.R.
Thank you for raising me. – S.R.
I know you meant well. – P.C.
Wish I could have helped. My close friend lost battle with addiction. K.C.
Goodbye I love you Grandpa! – D.S.
You were always my rock! (To my Daddy) – K.J
Thank you and I’m sorry. To my mom. – P.V.
Tell me your story, Grandpa. – C.H.
Please forgive me. I’m sorry. – B.P.
I’m taking you home now. – S.S.
Why didn’t you tell me? – K.K.
Your granddaughter is 21 today. – S.H.
I forgive you dad! – L.S.
You can let go now. – C.V.
Dad, you tried your best. – B.S.
You have changed my life (for the better) – A.Z.
You were my life, Garry. – S.N.
You’re the definition of cool! – S.R.
I love you. To a boyfriend that died in the Army. – E.H.
Sometimes we just can’t get it out in five…
I love you thank you for raising me I’m sorry I wasn’t appreciative and loving to you I should of listened to you about him I’m a good person because of you. – R.G.
Thanks Daddy for being the best!! I love you!! – J.R.
Where did you hide the money? – A.L.
I will love you always!! – S.L. & T.C.
We focus exclusively on providing content by, for, and about caregivers.
You’re a caregiver if you…
- are supporting a loved one through an acute illness, like cancer
- are supporting a loved one in recovery after an accident
- provide support for a loved one who has a chronic illness or disability, like diabetes, mental illnesses, or autism
- help an elderly relative or friend with household chores, the bills, and other tasks
- are a professional caregiver in a home, nursing home, hospital, or other facility
- volunteer to support the ill, disabled, or elderly
- have ever done any of the things mentioned above
We welcome a wide variety of artwork and writing for publication on The Caregiver Space
Some of our authors are experts because they have degrees, certifications, and professional experience. Others are experts through lived experience. Many have both. We’re interested in honest stories with strong voices.
This is an inclusive space. We welcome all viewpoints and share stories that reflect a wide variety of opinions and beliefs. We each share our personal story without tearing down others. Your voice is welcome here.
- Nonfiction, essays, memoir, prose, poetry, interviews
- Photography, illustrations, and video art
- Reviews of books, TV shows, and movies
Topics that have been on our radar lately include…
- Planning for an uncertain future; living without a diagnosis; making sense of survival predictions
- What it’s really like to be a professional caregiver; moving to a new country to serve as a caregiver; being a caregiver at home and at work
- Losing yourself to taking care of someone else; maintaining your identity while caring for someone else
- Managing family discord in times of crisis; working together to care as a group; community solutions to providing care
- Juggling caregiving and earning an income; making the decision to become a caregiver full-time; paying the bills while caregiving full-time
- How illness and disability intersect with affordable housing, food justice, and discrimination
- Fighting the shame and stigma around disability and illness, especially mental illness
- Going back to ‘normal’ life after caregiving
…but we welcome submissions on any topic related to life while caregiving.
Please review our author guidelines before submitting.
Submissions can be sent to email@example.com (with your submission in the body of the email) or submitted online. You must be logged into your Caregiver Space account to submit your post online.
Deadlines: Rolling, submissions reviewed each Monday.
We all know there isn’t enough support out there for family caregivers. However, there is some support out there. As a family caregiver — a spouse, sibling, child, other family member, or friend — you may qualify for financial assistance.
Some programs in the US provide family caregivers with a set stipend while others provide an hourly wage. You certainly won’t get rich as a paid family caregiver, but it can help replace some of the lost income and cover some of the increased costs of caregiving.
I can’t work now. I don’t have an income but thankfully my husband does. We make HUGE sacrifices in what we do/buy. A lot of medical supplies/private pay Aids are paid out of pocket. Sure, it would be a blessing if it was all covered. We paid over $10,000 to make our house handicap accessible. It’s HARD! – Andrea R.
I left my job 3 years ago to care for both my parents. – Pat E.
I provide 24/7 care year round. No vacations or days off. My mom is 89 with dementia. I get paid $0.00 for this care. Yeah I have to get her up, bathe, and dress her. Also prepare meals, do her blood sugar, blood pressure, and medications twice a day. I change depends for her. Depending on her functioning level I may have to puree her food and feed her. I handle her medical appointments as well. – Elizabeth B.
My daughter became disabled at 21 and I had to be her caregiver. In Alabama caregivers get nothing. I’m single so had to move us home to my mothers. She is 25 now but praying I can find a part time now. – Kim H.
There were so many times I had to chose between getting mom her med’s or paying a bill. It’s sort of what I am going through myself now. Mom was a little better off, since she had social security and my dad’s retirement, plus my pay. Me, all I have is my disability. At the very least it puts a roof over my head, which gets rid of that stress. – Thom F.
The last day I worked outside the home was Aug 2, 2014. Lost my job, car, in massive debt I can’t pay. I finally swallowed some pride and signed up for food stamps. $194/mo is all I have coming in. I love my mom dearly. – Tom C.
My Mom quit her job of 35+ years to take care of my Gran; we did shifts – her, my brother, and me before she passed from cancer (she also had TN). I’m blessed to be a SAHM but I also have 2 daughters – 1 autistic and 1 bipolar/autistic, and a husband with multiple medical issues (2x heart attack, PE, diabetic, TIA, etc) and I have TN. Honestly, we sold our home and my Mom’s home now and we live in a trailer park 2 blocks apart. It sucks to be sick in America. – Maria E.
I have to take early retirement to take care of my husband who has Alzheimers with Lewy bodies dementia and Parkinsons. Plus he’s legally blind from glaucoma. We don’t qualify for SSI and my insurance won’t pay for in home csre, so at 62 it’s me. I just hope I can do it. – Vicky C.
I ended up having to use every penny I had as well as having to sell everything even my car so i could take care of my mom and dad. While i don’t regret taking care of my parents it changed my life in ways I wouldn’t wish on anyone. – Marsha H.
Life is interesting..thirteen years taking care of my husband who had a stroke with brain injury, dependent on insulin…took care of my father who died of emphysema and now have my mother who suffers with heart failure and diabetes. One day at a time..we are on SSI income with medical services and medicine going up all the time. Working on keeping my house and paying the bills each month. One day at a time..we are blessed and this too shall pass. – Carlene E.
Caregivers are heroic and save our country millions in Medicare/Medicaid dollars annually by doing this difficult work themselves, versus placing their loved one in a care system. – William W.
Getting paid or receiving some kind of stipend would definitely relief the stress and worry over money for sure. I haven’t found any solutions yet. – Barb G.
You can learn more about the different programs that provide financial support for family caregivers. Unfortunately, the US has a patchwork of programs, each with it’s own specific requirements, and many caregivers fall through the cracks.
The rules are different from state to state,county to county. In Prince William County,Va…they believe it is a Spouse’s Duty to take care of their spouse (I had to leave my job to take care of my husband),but if we lived 20 mins north,in Fairfax County,Va, I would be a paid caregiver! – Kimberly O.
Here’s how the programs work for real caregivers, like yourself:
I have been a paid caregiver to my hubby for sometime now, I’ve been home what seems like more then work. I am so grateful for this program, and even more so for the company I work for. Hubby hated new nurses coming out all the time giving his full medical history for every visit and never feeling any comfort or hospitality. I can recognize his needs before he does, and he too is grateful. – Shannon A.
I get paid. It helps, but I have to tell you the process in getting it took over 6 months and it’s a monthly battle trying to figure out all the red tape. You’re dealing with the government so keep that in mind. – Jeanne O.
I have a son. I am his carer and was on the carers payment and believe me it is not enough money to pay bills and live on. I gave it up and went back to work. But I still shower, feed, and dress my son before work. He can stay home a bit by himself till we get back and start all over again. – Valerie Z.
My father should have been eligible for this and was declined. – Sherry H.
I’m in Colorado and I get paid to care for my disabled husband. – Jessica C.
After many years as an unpaid caregiver for three different generations, I now qualify to be a paid caregiver for my adult medically fragile son who lives with me. Because of this, I can now afford his (expensive) special dietary needs, additional insurance that covers specialists who couldn’t/wouldn’t see him on medicaid/Medicare and to pay for uncovered medical expenses ie medications and his wheelchair. My son’s health is significantly more stable, it has greatly improved the quality of his life, but also mine. I’m no longer constantly torn between financial desperation and my son’s needs. It also saves the state money, as nursing home care would be expensive and as a family member I get paid a lower rate per hour than non-family members would. Win-win all the way around. – K.S.
In Kentucky I get a generous caregiver budget for my girlfriend. If we were married that wouldn’t apply. It’s not right. – Mike S.
In Texas they pay family caregivers, although you can’t live with the person. You can get paid 4 hours a day to be with them. – Heidi V.
In Texas there is a 6 month waiting list just for the paperwork to apply, even if patient is on hospice. If the patient has any funds over $2000 it’s a big fat DENIED! – Katherine W.
I get paid to care for my mother. We’re in California. – Kim D.
I get paid to take care of my son, but they will not take out social security for me for retirement. I don’t understand why not? – Colleen A.
Colorado has amazing benefits. You do get paid as a CNA to provide care. – Jessica G.
If you qualify for respite or nursing care in Michigan everyone can be paid except the spouse. The person that knows them and cares about their well being the most. The person that needs to be at every doctor appointment. It is so frustrating! – Danielle H.
I am in Maine. I don’t know about other companies, but the one I work for will pay you if you take the training. It’s all done online at home. – Cheryl M.
I am in the process of applying in California. The person receiving care has to be on Medi-Cal. Then they need a note from their doctor and a home visit. Fingers crossed that mine goes through. – Sharon K.
Yes, you can get paid in Illinois, but with stipulations. I needed to quit my job to be caregiver to my son and went through the process with the state, which took over a year. All they qualified me for was a respite care because the process took so long and I had already quit my job. Now the new governor coming in is probably going to take a lot of that respite away! – Nancy E.
In North Carolina you can be paid to be a caregiver for your adult children with disabilities. It’s not a lot and you can only get paid for 28 hours a week. It helps when you have to suddenly give up a job to care for your child. In our case, my daughter was severely injured in an accident over 3 years ago that left her a quadriplegic and with a TBI. I’m so grateful to have this income. I get paid through Independent Living. – Patricia W.
The state of Illinois has a program that I was paid through for over a year. It helped out a lot. I did it through the DHS’s DORS. Worked directly for my mother. It didn’t take long to do. In fact it was rather quick. Maybe 2 weeks? But with the state so messed up and all the budget cuts they were looking for anyone they could kick out of the program. And one day they showed up to do an unscheduled assessment. The case manager and his supervisor said my mom was too far gone and recommended a nursing home and kicked her out and that was that. – Aaron E.
In Illinois DHS DORS (Department of Human Services, Department of Rehab Services) only provides help for disabled people 59 and younger. I just got an email from them. They said go through Dept of Aging. Which I did and they said I would have to go through local senior services center, which told me the previous info I posted. So once again I’m in a dead end of endless chasing agency after agency. – Kelly W.
Yes, it is true you can get paid for caring for a family member. It’s very little, but better than nothing. – Judith M.
I am with vision home health care garland, Texas. It helps with my moms extras. – Angie P.
I get paid forty hours a week.. I only took up the option about a year ago. – Carolee S.
In Texas there is, but the waiting list is long. – Jewel K.
It isn’t the best deal. My niece lives in a state with generous caregiver benefits, and got paid. Then her dad died. She had no work skills or history and they lost the subsidized apartment. – Kathy G.
In Michigan they will pay anybody but a spouse. Our caseworker told us to get a divorce just a piece of paper! That’s crap we are still married! – Nikki D.
I live in the state of Arizona, I am a caregiver for my adult son. I work for an agency and became a certified provider. The agency can help you with paperwork to see if your loved one qualifies for services.If they do, you can become a certified provider and care for them. – Suzanne K.
In Georgia they have to be on Medicaid. My mom with ALZ will qualify for medicaid in the next year and then I can get paid to care for her as a registered CNA. – Sonja A.
If you live in Massachusetts, there are many programs that provide a money stipend for caring for loved ones in the home through medicaid. – Christine H.
I live in Ohio, I’m a certified caregiver for my adult daughter. I’m a independent provider through Medicaid and Department of Developmental Disabilities (DODD). It was a really simple process, requires CPR training, 8 hours of training, a background check, and a 20 page packet that I had to fill out. The worst part was the waiting; it took 16 weeks for me to receive my provider number. All well worth the wait, now I make a living along with caring for my baby girl! I thank God everyday for the fact it all worked in our favor. It took me four years to figure out that the program was available. – Scott T.
Only eligible for this if the loved one has Medicaid in Missouri. – Allyson L.
I get paid by Medicaid to take care of my husband here in Colorado. He’s paralyzed from his neck down following a car accident. – Ann T.
Oregon does, but it is a Medicaid program, so you pretty much can’t have much assets and there is a ton of other rules. And if you are a spouse then there are even more hoops to jump thru, as it’s a different program in Oregon, though still Medicaid. The process was supposed to take a couple months. Eight months later we finally got through all the red tape. – Dwight P.
My husband is disabled, C-4,5 quad. I am now able to be paid to be his caregiver. My hours are limited. Medicaid/Medicare keeps you stuck being dependent on them. My husband was a Master Plumber and could do some work from home on his computer. But, if he earns income, he loses his benefits. His medical costs are so high that we’re stuck. – Ann T.
I am in Maryland I have a 23 year old son with cerebral palsy, in a wheelchair and totally dependent of care. I left my job a year ago to take care of him full time. He has a caseworker, but they do not tell people these programs are available. I had to research and ask. Then they act like they know nothing about it. I pushed the issue and they found information. She applied for me to be put on his Medicaid waiver to be his paid caregiver. It has been a month I have heard nothing don’t even know what the pay would be. I hope everyone that needs this gets the help they need. It comes down to having to work but having to be home to care for them full time. I feel like there is either no help or very slow to get answers. – Linda S.
I get paid by medicaid to care for my mother. It’s a total blessing. – Angelina F.
Arizona has privately owned companies that hire family members or friends of family to provide in home care as well as people who just want a job. The client must qualify for care through state funded medicare. Client then gets assigned a company and caregiver. The client can request a specific company and caregiver to provide that care. More than half employees of in home care companies in Arizona are family or friend of the client. – Debra C.
I got paid thru Medicaid in Ohio to take of my Handicapped Brother. I took a lot of classes to get certified by the State. It’s not much, but it sure as hell helps. – Emma B.
In Tennessee if your loved one qualifies for both the PAE (physical assessment evaluation requirements) and the financial requirements for the Medicaid Choices program. However, I was told that in the near future Tennessee might do away with a family member being able to be the paid caregiver. For now it is in place. – Holly O.
In Illinois it’s a complete joke! I applied for this and was told my mom and I met the requirements. However, they would only pay 20 hrs a week and I had to go through training and get hired on through a company that works with the state. And if I was on the clock with them I wasn’t aloud to refill my mom’s meds or dispense her meds to her! Oh and she would have to apply for Medicaid and if she were approved when she passed away they have the right to put a lien on her house to repay back whatever they paid me! So I would have to go through training for someone to tell me how to take care of my Mom when they have no clue then they slap on a lien! We are sinking financially I have no choice to try to look for a job now and pray she’s ok alone. – Kelly W.
I was told I could be paid to care for my mom here in Illinois. But once she passes, her estate will need to pay the state back all the salary it had paid me. So, ultimately, my mom really has to pay me if we choose that route by taking it away from her beneficiaries. – Cindy H.
Each state has different Medicaid programs, so run a specific state Medicaid web search. There are also other options for paying for senior care services such as reverse mortgage or viatical settlement. – A.F.
Consumer Directed Attendant Support Services
I’m my fiancées full time paid caregiver. He has a Traumatic Brain Injury and Epilepsy due to his TBI. He is on Medicaid, so there is a Program so that you can be a paid caregiver called CDASS (Consumer Directed Attendant Support Services). It’s a home care choice for people with disabilities. Doesn’t matter if you’re family or not, if your loved one qualifies the caseworker determines how much care they require and that determines how much “allocation” (money) the state allows per month. The loved one can have more than one caregiver. They can have as many as they want, but you have to stay within your monthly allocation amount. Before this program was brought to our attention I was paid through a Seniors Resource Center so there are other options out there. Please be aware that it’s not the same in every state. I live in Colorado.
Community Based Alternative
In Texas it depends, I’m a paid caregiver for my adult son, but not until he was accepted for Medicaid and then we signed him up to a program called the Community Based Alternative or CBA. They pay me for 21 hours at minimum wage. It was a long wait, but we had nothing but time. He sustained a brain injury in a auto accident at age 30. It seems as though Medicaid has a don’t ask, don’t tell policy, so you have to ask. – Jan C.
Agency on Aging
If you have an Area Agency on Aging, that’s what it’s called here, you can ask them for help. I can take care of my mom and get paid, fill her meds and what not, but since she owns her home she can only get a voucher for $300. She has to pay whomever cares for her. Then she sends the signed paper to Agency on Aging of Westmoreland Co, then she is reimbursed. If she sells and rents a small apartment then she qualifies for more help. – Heather G.
Contacting your Dept. of Aging would be your first step. They will set an appointment to assess mom and her needs. My mom is non-ambulatory but was only given 15 hours a week. I had to go through my state rep to get a reassessment and I’m now at 22.5 hours a week. I had to go through a background check, fingerprinting and 3-day training class with Help at Home. I was told by the caseworker for DOA that I would get more hours if we didn’t live together, since they expect me to do all the other work anyway. – Michelle C.
I live in Arkansas and the Agency on Aging pays me two hours a day. It’s a joke. I am here 24\7. – Janet C.
In Illinois you can thru the Dept of Aging. Help at Home is the agency that I am paid thru for 22.5 hours a week at $10 an hour. Dept of Aging assesses the patient and determines the amount of hours that will be allowed. I am not allowed to give meds on company time. I had to give up POA to my brother. I am the only family member caring for mom. I am with her 24/7. The amount of hours paid is an insult but better than nothing. – Michelle P.
Supportive Home Care
It was a long processes for me in the state of Wisconsin. It took from my first initial phone call in February to receiving my first payment in July. Call your local Aging and Disability department. You can get paid Supportive Home Care (for doing laundry, cooking, errands etc) and then they have Supportive Home Care (for anything hands on…bathing, changing etc) you can make a decent amount of money. Plus the program is also to help keep your money in your pocket. They help pay copayments on prescriptions, if the person needs depends, disposable pads which is help and they have it delivered right to your house. It is most definitely worth checking into it. – Dawn
If you take care of a veteran, there is a benefit called Aid and Attendance available through the VA. I quit my job two years ago, moved in with my Daddy and he received an additional $700 per month to give to me for taking care of him 24/7. It’s not much but, it helps. – Stephanie T.
Rhode Island does not cover it unless you are 50% below poverty level and then it’s a huge waiting list to even get into the program if you qualify. Veterans affairs is even more bush, they don’t cover crap unless it was combat related. If not then ‘it’s we can give you a Dr or put them in the VA nursing home.’ If you have ever been to the VA you will understand that going to the local veterinarian would be a better choice. – Kevin S.
I’m in Tennessee and get paid through my papaws VA benefits. Differs in every state I guess. I’m sorry you all can’t get paid. Something should be done. – Elizabeth R.
I get a monthly stipend from the VA to care for my husband. Post 9/11 disabled vets and their caregivers should look into it. – Katy C.
In Florida we have VA Aid & Assist. My dad was a veteran. I get it for my mom. I am able to work and have someone with her when I am not. – Sandy H.
I’ve been my husband’s caregiver since November 2003. He became disabled due to service in Desert Storm; he was one of their guinea pigs that they injected with pesticides. The VA turned me down as his spousal caregiver since he’s not bedbound. – Glynnis P.
My husband has MS. He was also in Desert Storm and given a huge cocktail of unknown vaccines. We are currently pending on Aid and Attendance as well as SMC’S for various loss of use. I know the caregiver stipend is for post 9/11 only and for injury and not illness but there are other ways to get compensation, don’t stop fighting. – Tricia R.
Thank God, my mother took out an in home health care insurance plan back years ago that actually pays for a family member to care for her. If we didn’t have that, to where I’m paid to stay home and care for her…we would be sunk! Best decision she ever made by far! – Rita J.
I took care of my sister the last three years of her life.. Her insurance company did pay me to take care of her, but I was only able to get paid one month out of the year because I was a family member. – Jennifer G.
I’m getting paid to care for my mom. I had to become a CNA and register with a state-approved agency first. We’re in Louisiana. 50 hrs/weekly. It’s through her long-term care insurance. Still, it’s working out well. – Ruby D.
Shared Living Provider
Here in Massachusetts, I get paid (tax free) to be a Shared Living provider to my special needs brother-in-law. MA also has a program to pay caregivers for the elderly (even their own aging parents). It is a win-win all around. Group homes (for special needs) and nursing homes (for elderly) cost the government a small fortune for each individual. The brother-in-law living in a MA group home costs the government approximately $300,000 per year. To care for my other special needs brother-in-law, I get paid $30,000 per year, tax free. Just look at that massive difference! Government saves $270,000 annually and I make a living wage. Win-win. – Kim N.
Personal Care Attendant
In Massachusetts if the ill individual is covered by Masshealth then there is a strong possibility of qualifying for the PCA program. They assess, and approve hrs and a wage and Masshealth will pay someone to be the personal care attendant. It is a God-sent! Spouses can not provide the care but they can oversee the caregiver. I don’t want anyone having the difficulty we did getting enrolled. – Tiffany L.
In-Home Supportive Services
In California, there is the IHSS program (In-Home Supportive Services) via Dept. of Social Services for low income patients. I received payment for taking care of my mom, and later on, my husband’s uncle. – Penny F.
California has IHSS. However, you have to have SSI or MediCal to qualify. There is a MediCal waiver but it only applies to the developmentally delayed. My son is blind so we don’t get it. – Kassidee R.
In CA it’s called In Home Support Services. My 95 yr old Mother has 2 caregivers and I am their weekend relief and standby in case they need a day off or sick. – Debbie M.
If you have a special needs/disabled child/adult you can. It’s called In Home Support Services and they don’t go by family income, Bill Gates could get it! – Shawna S.
I get paid to take care of my disabled daughter through a federal SSI program administered by the state and county; it’s called IHSS. Annie A.
In California we have In-Home Support Services. You have to be low income, which I became after Part D went into effect years ago. I have multiple sclerosis and have a caregiver. Family member should not feel guilty or greedy. If you have to leave a job or cut back on hours, know that there are resources to get paid. – Janice V.
We have a support program here in California, but please read and be aware of issues that can happen. We took in my 90 year old mom-in-law after a long hospital stay and rehab. She is now on hospice care. We had to shift our work obligations to accommodate her needs. We knew that IHSS in California would take a while, but we thought it would be more like a month or so. It has been over three months, as she had to re-qualify for the support program as everything established to that date cancelled because she was in a facility over a month (she had received IHSS benefits for many years up to now). When she is finally approved again, she can “hire” me to be her caregiver. At that point I wilI need to go through the process of being approved, trained and fingerprinted, which may take possibly (they said) another 6 to 8 weeks. Now I realize that can mean much longer and I can’t do anything about it ahead of time. The good news is Mom is doing wonderful here at home with us. Needless to say, we now have some challenges financially to make this work. We will make this work no matter what, but I think it’s wise for anyone considering using a support program to realize that a any support program has many steps to quality for and know that the pay is minimal. Although she will be compensated back to the time she was out of the hospital, it would have been good to know that payment might be as much as six months later. Maintain your work status, if possible, until the support resource is established. – Patricia C.
I am actually a Social Worker who works at an agency that reimburses Caregivers through Medicaid for caring for a loved one in Massachusetts. The company is Caregiver Homes and they are in Massachusetts, Connecticut, RI, Louisiana, Ohio, and Indiana. – Christina H.
Guardians of Children
Parents of disabled children living in New York can now be paid, as of April 2016. – Bambi K.
Talk with your tax preparer. I do know there are tax deductions for caregivers. The amount would be deducted from gross income and your taxes lowered by your tax bracket. – John W.
The only thing I am aware of is the caregiver amount we can claim on our income tax. – Anita K.
My mother does not qualify for any state funded program so she pays me herself. I’d love to do it for free but cannot. She would have to pay someone whether it was a caregiving agency or a nursing home, so why not me? Besides, I am much much cheaper! Been this way for 16 years and it’s worked out fine. I feel bad for others who cannot afford this. – Beth I.
Ready to see if you could get paid as a family caregiver? Learn more about the different program and requirements.
The sad reality is that our society does not value the elderly, ill, or disabled enough to provide support for them or their caregivers.
This needs to change! We need and should have programs in place to provide care for our elders that are straight forward, easy to access and compensate the hardworking individuals out there who lovingly care for those that require caregivers. – William W.
We all need to speak up and demand that the government and the insurance industry stops relying on unpaid family members and starts stepping up to the plate.
Some comments have been edited slightly for clarity or grammar.
We hear it all the time — and I’m sure we’ve all said it, too — our society doesn’t value family caregivers.
It sure feels like we aren’t valued. Doctors refuse to share vital information with us, while they’re pushing more and more responsibilities on us — assuming we’ve got the time and the skills to be chauffeur, nurse, housekeeper, and errand runner.
But then there’s the stuff about how we’re saints and heroes. I personally find it cloying. I do not feel like a saint when I’m changing my grandmother’s diaper while she’s shouting for the neighbors to save her. It does not feel heroic to go to a dozen pharmacies in one day or spend hours on the phone to fix clerical errors. Was it my mission to be put on this earth to fill out insurance paperwork? I hope not.
Many of you feel differently and I’m not here to disagree or dissuade you. We each have our own calling, but the incredible number of people who find themselves responsible for the selfless care of someone else is so high I suspect this isn’t everyone’s reason for being.
Caregivers feel marginalized — are marginalized — despite how common we are. Why are family caregivers asked to give up months, years, or decades of their lives to care for someone else without any pay? The tremendous cost of caregiving leaves many family caregivers destitute, unemployable, and without a safety net of their own. Who will care for the caregiver when they need it? Even the most fortunate caregivers are not insulated from the emotional devastation.
It’s the ultimate insult to our disabled and ill loved ones that their care requires martyrdom.
Yet caregiving is seen as vital. A common synonym for family caregiver is natural caregiver. It is seen as natural that we give this much of ourselves, often without support. When my mother was unable to pick up her uncle after a medical procedure and his neighbors kindly volunteered, he was given access to home health aides, along with visits from a social worker and a nurse. When my mother was there at the hospital, it was simply assumed she would fill all of those roles herself.
When I saw the headline “Healthcare is a Business and Not a Right” I couldn’t resist the provocative title. The author, citing economist Robin Hanson, presents a compelling case for why people are so disgusted by the idea of people being billed for medical care. Caring for each other — from cooking meals for each other to helping someone work through a problem to watching after a child with a cold — all fall under reciprocal altruism. These are transactions that fall outside of the market system.
My father is not going to invoice me for giving me a ride to the airport. My mother is not going to present a bill for our lunches together. My best friend does not charge by the hour for the times I ask for her advice. My former professors don’t charge me for their mentorship, even if it was once a responsibility under their salaries. That’s reciprocal altruism. We support each other without a quid pro quo.
You can see how much society values caregiver when someone shirks their caregiving responsibilities. They’re vilified. Even providing care in a way that’s not acceptable — like putting your mother in a skilled living facility you’ve so carefully vetted and visiting her every day while finding a way to cover the costs — will get you snide remarks or open accusations of neglect.
Reciprocal altruism works just fine for a short-term illness. Chronic illnesses that are manageable work well, too. Yes, there is a cost of co-pays, out-of-pocket care, getting to and from appointments, and missing days of work. The community rallies around when someone falls ill or has a flare-up. Most of us weather this without major sacrifices. It feels like part of life, family, friendship.
The system falls apart when an illness is prolonged. The community does not maintain that rally for months or years. Your relationships suffer. The bills pile up. Friends drift away. You realize you cannot keep juggling work and care. You tap into your retirement. Then you sell your home. The bills keep coming. You grow increasingly isolated. You’re stressed to the point where taking care of yourself is not an option. Even the co-pays add up quickly. The medical supplies, the cost of parking. There are patchwork systems of support, but even the few who qualify for it find that it is not enough.
The question I hear most often is “How can I get paid as a family caregiver?” It is always couched in apologies, guilt, and shame. The explanations for why they do not want to ask for money for their time and sacrifices, but they are forced to.
When you get yet another bill for thousands of dollars and overhear someone else claiming “Their love is all the payment I need” it’s enough to make you lose it.
Our legal system and our society are set up for an age when the ill rarely lingered. When people with disabilities died as children. When the elderly were rare — having survived a gauntlet of accidents and illness — and could be cared for by women who weren’t permitted to work outside the home. Surely, we do not want to return to that age.
Our world has changed. Huge medical breakthroughs mean we can keep people alive longer — but no one has set up the systems to support them so they can thrive. We save them and then we send them home. This wonderful scientific advancement is creating it’s own carnage of people who aren’t being allowed to reach their potential.
The levels of care required are not natural. So many caregivers face a burden that is too great to carry on their own.
Unlike McArdle, I do believe healthcare is a human right. However, in a world where there are so few objectively right answers, she makes a powerful argument. If we all have the right to healthcare, why is it individual caregivers who are bearing the cost?