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?
Good article, thank you for highlighting this topic. I spent five years caring for my mother (Alzheimer’s) and went into it with great intentions and considerable ignorance. I thought I would be able to continue my freelance career, but within a year realized how impossible that was going to be. Not only is there no support for family caregivers (this was in Laval, Quebec), there is no time to even look for support! My parents are not well off, so we couldn’t afford to hire extra help in any area except mowing the lawn and clearing the snow. I did find time to take a course offered by the Alzheimer’s Society in the evenings, but that was over-the-top exhausting and the material was extremely outdated. My mother’s geriatrician was useless except for wanting to put her on drugs. Suffice it to say, by the end of my five-year caregiving journey, I had spent over $20,000 of my precious savings, was utterly exhausted (PTSD, adrenal fatigue, insomnia and anxiety) and so angry at the healthcare system that it gives me tachycardia just thinking about the inhumane policies in place. I would like to write a manifesto for family caregivers; I’m just too tired and angry right now.
According to the Family Caregiver Alliance, family caregivers provide about $450 billion per year in free services–a huge savings for the US Government. I think family caregivers are the backbone of American health care–unsung heroines and heroes who deserve understanding and financial aid.
My husband went into Hospice at home 4 years ago and is still alive after being given only 4 to 6 months to live. I work 40 hours per week and am still expected to take care of him around the clock. It has made my life so stressful my health is starting to fail. My husband has grown children who promised to help but they do not. No one can truly understand this sacrifice if they have never had to do it. My life would be so much easier if I could be home to take care of my husband. That way I could quit my job and stay home to take care of him.
I am fortunate to live in a state who pays me a stipend every month to care for my adult son with disabilities.
Less stressful hire strangers if possible
Hiring strangers is never less stressful. Spend an afternoon trying to convince your elderly grandmother, who can’t be alone, and won’t let you move in, that SOMEONE has to be there with her when she showers, someone has to cook and shovel snow, etc. Since she wont let you move in, it has to be a stranger. THAT goes over well. I’m a full time caregiver for my husband, who has dementia. I have been doing this for 10 years now. I’m disabled on my own, but I get no benefits. When his dementia progresses to where he needs a nursing home? I will lose ALL income . I don’t get paid for caring for him because I’m his wife. However, if our daughter were his caregiver? SHE would get paid! I will be broke, homeless and disabled, with no way to support myself and no way to qualify for any programs that would help me change that due to a total lack of income. I should get paid for this. I never will. I’ll die homeless and alone, with no medications for my own health issues, and no food to eat. But I will have taken care of someone for free for years, and saved the government a ton of money!
This is terrible I had no idea you couldn’t get paid depending on where you live. FYI : for all those taking care of a loved one, child, friends that is considered disabled and can not complete daily tasks with out assistance. That are on a fixed income , med-ical eligible can get IHSS . Home support services. This is going to help me so much having the responsibility of my senior parents. And not getting support from family. I can get that help I so badly need. I hope that are county shapes the heck up. Saddening…
It is a terrible position to be in to be punished financially because you love someone so much.
The real reason Caregivers aren’t paid caring for loved ones
You Can’t Afford Us ❤️
I’m living in the aftermath of this situation and it’s hard. I love my dad and cared for him out of love. But now he is gone and I mourn. Then reality hits. If you can work it is very hard to do both. But I’ve been out of work 6 years. A hole in my resume. I haven’t put anything into a 401k. I wasn’t paid to care for him and I put a lot of miles on my car which means lots of repairs. I have 3 siblings. 2 who did nothing and 1 who helped when she wanted too. They don’t have the hole I have. I loved my dad. No doubt. But the reality is it takes more then love when you are left to pick up the pieces. There is no one to help with the rebuilding process
Wow, there are so many of us. We need to get all of us together and try to for coverage, we are an institution. We should be a relevant institution.
This is me.
My mother still had some money in her bank when she began to decline. We had hired caregivers a few hours a week to be paid, and they were very good. But of course not enough. I did all the shopping, and running around doing errands, trying to keep up the house, arranging for the lawn to be cut. I didn’t take any money except for a few groceries for my family now and then, when I bought her weekly food and stuff over, and $20 for gas.
All seems to point to pointless IMO
My sister-in-law asked for 11.50 per hour to sleep at her parents house when her father was brought home to pass. The other siblings knew nothing of this until he passed away!! I will never forget that she took money from her mother.. such greed.
We’re too busy working other jobs and keeping our own lives together along with what caregiving, cooking, cleaning, advocating, escorting, appointment making, laundering etc etc to have time to advocate for why we should be compensated.
My brothers swore I was getting paid !
Who the heck would have been paying me. Eleven years devoted to that angelic mom and zero help from them. I would do it again.
I would not.
I am still doing “it”, being a caregiver to my mom. My mother has never been a nurturer, so, nothing new to being a mom to her, exhausted, aged, over all of her ugliness. I will continue caring for my mom, but will never say that this is a privilege or an honor.
Sandra, I am sorry for your situation. I will pray for you. It’s hard at its best.
Do you have any siblings that step up and help ?
Does she have dementia or Alzheimer’s ?
they dont pay caregivers that come in and take care of the family member. That is my experience. I got hardly any pay for what I did.
I live in iowa and don’t get paid for taking care of my husband either and it’s rough but i do it because i love him.
You can be gifted up to 14k per year if the person you care for has funds.
It’s the ultimate insult to our disabled and ill loved ones that their care requires martyrdom.
We don’t get paid because we’re too tired as a group to get organized and lobby for it.
Truest statement ever.
if we lived next door in alabama, i’d be paid for my caregiving. but…we live in GA, where it’s just considered to be my job to take care of my husband. on top of that, though, i work FT to support us both, and my company doesn’t offer health insurance. i’m grateful my husband is on disability so he gets the care he needs, but i do not. i had an eye infection this weekend and lay awake wondering what would happen to us if i lost my vision.
Are there any free clinics that can help you? Having insurance these days isn’t always the answer either…my $500 deductible is now $1000 because we switched providers. I don’t have $1K to throw to the cause.
i do go to a free clinic to have my prescriptions refilled but that’s really all they do.
Not everyone in alabama qualifies to get paid
I am 24/7 caregiver to my aunt the only pay I get is a smile from her.
Your comment makes me wonder how often people actually move to other states where the laws and other provisions are friendlier toward caregivers and those who need caregiving.
Not sure there will be any life left in me. Missing out on grandchildren but trying not to be resentful of that. Choice is difficult some but my duty. Feel indebted to my dad…plus.
I don’t know where you all live, but in the state I live in we can get certified to be a caregiver and get paid for so many hours a month depending on the assessment of the client
Most states do not have any such programs . What state? Maybe we all need to live there.
Dont eithe but two counties over you can Go figure.
Washington State and Oregon does too. Though Washington has better benefits for the eldery/disabled person and the caregiver.
Please tell us your state.
The reason we don’t get paid is because we LOVE and the government knows that. When you love, there are no limits as to what you do including sacrificing your own career, marriage, a family, friends, our health, etc. NO ONE gets the constant attachment we feel to our loved ones than us. I say it everyday, (usually to myself!) No one gets this role unless they’re in it and living it day to day. Even with paid caregivers who are not family, it’s impossible to fully step away. There are so many tasks that only family can do (work limits on paid help). Also, as family it’s different, I care about his quality of life and him having and doing things I know he likes. Bottom line is, the government doesn’t care how hard we work and especially that we do it for free. I believe from their standpoint, we’ll just die sooner and be one less person who will “need help” one day. Rant over! Thanks for reading!
Good job! Well said.
Diana Hale thanks! Nice to know I’m talking to myself for once!!!
Yes. The Republcans WANT millions of us to die. Hopefully their evil plan will crash and burn before the end of the month, thanks to John McCain. Keep your fingers crossed and pray, or we, our loved ones, our children and grandchildren are all doomed.
I agree Melissa Benanti. Others know we will do this no matter what as we love so deeply. Since we will wear ourselves out sooner rather than later, we won’t be here, and the number of people who will receive back the money they paid into the system working since they were 16 is substantially reduced since they will be dead. Their families will not be given that money back either.
My husband is on age and wavier medicaid and yet I don’t have home health aids cause they don’t have help in this area if u get help they are not dependable. I had one who was old enough to have his own aide. I was forced to give up a job to stay home and take care of him no substitute for wages there.
I agree. I had to leave my work at 59 to date for my wife with Alzheimer’s
If I got paid I would get some much needed medical care and rest but since I do not, I will just wait until I am all done! Having help in would be a option but not allowed either unless you are on medicaid.
I’m. So. Tired.
I don’t regret a day. We are not heroes or saints. Quit with the words and pitch in for an hour or two and give a caregiver. Break. We are human too and deserve to be treated as such. Talk is cheap my friends. Stop for a visit. Have a cup of coffee. Do something normal with ME. We will never be the same. Lost my son almost three years ago I still have nightmares. Stop with The talk and give one a visit.
I totally agree with this: 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.
The federal government in Canada has a caregiver benefit that can be applied, but the catch is, the senior’s maximum pension income amount is $15K a YEAR in order to be qualified. And no, we don’t qualify because we made too much. So basically, I am working to keep up with the expenses to the household.
Luckily the VA started a program so I now get paid to be a full time caregiver.
Except they are cutting the program. Can’t nares just recalled it. St least they might be overhauling it
Rebecca, the recipient must have seen active duty. My husband served 7 years in the cold war but am told that because he did not see active duty, he does not qualify.
Well that really stinks.
Keeping my spouse home and safe till the end is all the pay i need. The joke around here is i get paid a box of banana Twinkies a night. And yes i eat a box a night
Love your humor…sometimes it is hard to hold on to that. Thanks.
Yes it is, But sometimes i have to show it to get through all this
We have a program here in Oregon that pays spouses for care of long term chronic illness. Last year they cut $1,000 per month. This year the legislator is ending all live in care. My wife has Huntingtons disease needs full time care 24/7 every day. Now what, skilled nursing home? Guess we have no value to the state. I wonder if Gov. Brown had HD or ALS or some chronic disease in her family, would she cut these needs? Shame on the legislator!
Amen . Perfectly written. If one more person says I need to take care of my self, I don’t know what I will do.
Rachel, I know how you feel. I have responded to that with, “well, you could come over for an hour and sit with my husband so I could actually leave the house..” Guess what I got? “o no, I couldn’t do that. I have blah blah blah….Why don’t you ask another neighbor?” One I know takes care of 3 grandchildren and a mother-in- law…Pleassse, spare me.
Exactly! If someone offered to give me a break, I’d take a nap.
I was paid as Caregiver to my boyfriend with traumatic brain injury
Forced free labor to live in poverty pipeline of institutional racism bullied by the government!
Look into your states fine print. I’ve heard the state takes your assets ie home or property in exchange for payments for home health providers. This may also apply to family caregivers paid by the state.
When people are getting a free ride, they generally don’t offer to pay.
Iowa does not pay. They would rather have them institutionalized
NYS does pay family members to care for there family. It’s called the Consumer Directed Program, its been in place for about 8 years now, although I just found out about it seven months ago, not something they advertise… but basically the person who needs care can choose who they want to take care of them, so if your family member is already receiving care aids, they can request who they want, and if they are not receiving care aids but should, talk to there insurance company and get the ball rolling…took about two months to get it going.
i fought for nearly 3 years just to get medical assistance for my IS. every agency i spoke to said spouses do not get paid . i lived in ny my entire life. i still dont get paid but at least now in iowa he has insurance coverage that covers what the va doesnt and a good care team.
Yep, we’re free labor.
Colorado DOES pay family caregivers
Sorry, I am not the caregiver, my sister is. She is caring for our mom full-time.
What program is this? I live in Colorado and have been told many times the state does not pau
Medicare and Medicaid
The IRS doesn’t either. I had to put on the taxes I ‘just live’ by my dad. Why? Because the two years with it just being us, he’s gone from ‘married’ to ‘head of household.’ Medicaid requires I file taxes too. The past two years with the new HOH status was been refused because I put myself as his caregiver, and dad put at the most expensive level which is ‘single.’ This year, I did things differently in hopes to stop this stupidity. 1) as I said, on my form, I put I just live with my dad. 2) I used a regular 1040, avoiding the EZ. Fingers crossed.
I get screwed every time.
This is the truest article I have ever read.
What a shame! 🙁
I was my mom’s primary caregiver for 4 years in her final struggle with dementia, I had people tell me I could get paid for it, could never find anything out
They do however take us for granted.
The solution is a guaranteed basic income for anyone doing 35 hrs of caregiving per week.
There are some ways to get paid but they’re complicated and take a while to figure out, and often involves bending the rules.Theres a great deal of stupidity and incompetence involved, the whole thing is a bureaucratic nightmare. The whole system needs to be torn down and started over from scratch.Whats frustrating is, theyre always touting the fact that they want the disabled to be integrated into the community, to have all sorts of opportunities, to get real jobs, receive minimum wage and live in independent housing….and no one says where that money is coming from.And the rules are so dumb…here in NJ, a guardain Cannot be a paid caregiver. can some one tell me Why??? a person who is caring for someone around the clock Can Not live in the same house with them. Well if someone needs round the clock care, how is the person going to help them if they are not in the same home at 3 am??
Loved through this with both of my parents…heavy sigh…
Sometimes we are not even valued by the people we care for….
Or mothers. It’s a hard job. You feel all alone in it.
Haven’t had a job in years because my husband had cancer. He died, then I went right to taking care of mom. She died, mow I’m with dad. When do I get a paycheck since i am so good at what i do. I don’t regret it but gee wiz.
I totally understand. It does not feel heroic… now. But one day it will mean more. It’s a loss of dignity for both of you. It’s not what you planned to do. It’s valid that you would think these things.
In NYS there is a program where the states pays a family member who is acting as caregiver for a family member.
[CHANGING A DIAPER DOESN’T FEEL HEROIC] – But, you help her just like she probably helped you when you were a baby/toddler (and SHE didn’t make a BIG DEAL of it, changing YOUR diaper. Like MANY things in life, they just NEED to be done. Some are NOT pleasant, but for her well being, hygiene and happiness, do what you have to do, rollup your sleeves (if necessary) and do it with a SMILE on your face.
I know you’re well meaning but this is not a good/accurate example
Because many family members want the money themselves in the end …I hate to state, but true in my case…it was horrible and sad
MONEY CAN’T BUY LOVE ! ! !
Plz cn u plz offer me a job i am a caregiver n i hv lot of expirence bt no job for me
Caregivers do get paid for taking care of family members, Just call your “Public Authority” in your county and get and evaluation done. A county social worker will come out to your home and do an evaluation and determine what you do and how long its takes to do it, how many hours you put in, among other things and if your income isn’t to high and you qualify you can get paid for taking care of a relative.
There are some programs that pay family caregivers the prevailing wage (usually around minimum wage) but it’s only available in some states and most places forbid spouses from being paid.
I ASK MYSELF THIS OFTEN.”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.” NOT FINDING ANY ANSWERS.
I cared for my mother at home for 10.5 years. She died of Alzheimers Disease recently but we fought hard. I would keep on caring for her if she were here. I have no income to speak of, but I don’t qualify for any assistance. At 64, outlook for Social Security is bleak. And I am in debt. Our society’s lack of compassion and respect for caring for others is a disgrace. I am an artist and I have a Masters degree in Astrophysics. And I advocate for caregivers and our beloved care recipients. The medical community should be ashamed that it is in the hands of the insurance and pharmaceutical industries.
Great article…so sad that this is so true for so many of us.
I was a caregiver for my dad and my mother. My dad passed away 14 years ago and my precious mother passed away in January. Many times I would think The Lord has put me here for a reason, but why????? What am I suppose to learn and use from this experience to help others. I know from my experience and it was one with lots and lots of bumpy road I understand what we must deal with daily. But I still don’t know how to help others in my small place in this world. I wish I could send surveys to caregivers on how to help
I actually feel the same way you do.
Great article! I’d at least like to have my social security credits from the 16 years I took care of my dad back. I have no clue what I am going to do in my later years (never married and no kids). Thankfully, a friend helped me get a job–which I will be forever grateful for. I actually pray I won’t be around that long.
I gave up working to care for my mother and mentally disabled sister, every time I get to the overwhelmed point I read some horrible article about nursing home abuse, and it renews me to carry on with what I am doing, I love my family.
Yes, so true..
You’re an angel, and I completely understand your point of view. What I saw in the residences (even before the pandemic) was appalling; I would never allow my parents to be warehoused like that. I have a disabled friend in a residence, and from what she tells me, the horrors are very real.
I am the caregiver for my disabled husband. I stay home and we live on his disability pension. Since I was a hotel manager, this was a serious pay cut. But I am ok with that. What I am not ok with is not having access to affordable health care. The ACA wants 25% of our pitiful disability to insure me. So we have done without. Now the worse has happened. I have a mass in my jawbone. I have already had a biposy ( results next week) and I am looking at 2 surgeries in the next 4 months. One to remove a section of my jaw, one to reconstruct my jaw. All out of pocket. And I need a caregiver and hubby still needs a caregiver.
I’m sorry, wish you guys the best.
I will pray for you. I was caregiver for my husband and to make matters worse was my son had three strokes ending up with dementia and cancer . I have lost both of them . I believe caregivers should be given funds to help and in your case your husband should be cared for without any cost to you. Our health care is not what it should be.
I am caring for my disabled husband. We moved to be close tlto our daughter and his Medicaid and Medicare pays for a caregiver while I work Part time. I cannot pay all the bills and I also have no insurance. Uuuuggghh!
So many prayers sent to you both❤️
Don’t know where you are, but I would hope if you call your county, or your city hall or United Way, even a social worker at the hospital, they should be able to link you to some resources that can help, and help care for your husband while you recuperate. I’m sure all the stress is making it all the harder. Take care…
Nancy, do you guys pay taxes on your husbands disability pension? And do you live in a state that participates in the ACA expanded Medicaid?
Who would pay me? I work 24/7 caring for my husband and have for many years, he is only 64,and I care for my Dad.
Depends on your state, there are different programs.
Look into the Consumer Directed Services paid by Medicaid, in your state. That will be a start for you.
Oh my lord, what a fantastic article. Think you hit every major issues surrounding care giving today. We are dogged by archaic thinking and the reality of modern medicine, and caregivers are forced to make up the gap. Even the archaic notion that care giving exclusively a female role. Latest figure show males are making up 45% of care giving and that alone, compounds all the points you touched on.
Cori Carl, as a caregiver to my mother of 91, for the past 6 yrs and my father for 5 yrs before he passed away I fit all your definitions, I never took this on expecting it to last 12 yrs, and I never did this for thanks from my two out-of-state sisters. But I also never expected them to abandon me or my mother.