Today we know that seven out of 10 caregivers work full or part-time and make up more than 15% of the U.S. labor force. But these statistics only tell part of the story. The real story is told by the caregivers themselves, many of whom have been laid off because of caregiving, or were forced to quit their jobs, or are only now re-entering the workforce after a decade.
We recently asked our community of over 30,000 to share their story with us. Employers, corporations, small businesses, listen up— these are the experiences, not just the numbers, of what your employees face as caregivers.
Have you had to leave the workforce because of increased caregiving responsibilities? What has that been like for you?
I stepped down from a job I loved to care for my mom, it’s the hardest thing I’ve ever done. – Reese K.
I lost my job because I couldn’t tell my then employer when my mother was going to get better. They weren’t willing to work with me or change my shift. I also had to withdraw from University too. – Apria G.
Being a nurse I just went from paid to unpaid and there is no escape. – Karen P.W.
I am 60 and trying to re-enter the workforce after a decade spent caring for my mother who was challenged by Alzheimer’s and dementia. – Kimberly H.M.
I left my job as an office manager a year ago to help my husband. He was hit with an IED in 2011 and shattered 7 vertebrae. He is in constant pain 24/7 and due to all the nerve damage he has to use a catheter for the rest of his life and he is just only 36. – Jennifer S.
I quit my job to take care of my mom. It would be nice to have some extra income coming in. – Karen S.F.
I quit work 4 years ago. Of course when my husband improved somewhat I was sorry because of loneliness and stress, and because my life has become so small. Now I find myself at 63 not really having the energy to take up with a new job. The caregiving life is very limiting… often depressing. – Mary M.
I lost my job a year ago and have not been successful in finding employment. I am okay with that because I am fulfilling my purpose here, caring for my mom. I don’t get breaks, vacations or days off but I wouldn’t trade my life for anything. – Michelle P.
Financially horrible. – Janet Winter
I retired early to move back home with my parents 5 1/2 years ago. My sister was here but wanted to put Mom in a nursing home– she was still active at that time but had quit driving. She lived in the yard in a mobil home our parents had bought for her and her family to live in rent free. She would go for days and not check on them. When I came home she got mad and moved to another state. I am now receiving SS and thank God everyday I still have my parents my Mom is 90 and had moderate Alzheimer’s and my Dad is legally blind with congestive heart failure. It is just me and my grown kids they have their lives but do help. – Hilda T.
Left my job in 2001 to take over as spousal caregiver, monthly paycheck below poverty level, hours increased. To say it has been easy would be lying, learned how to get by on next to nothing, stretch a SSI check to last all month. Would I do it all over again if needed? Yes I would. – Charles S.
I had to take early retirement when it became apparent my husband could no longer be alone for any but very short periods of time. He is now in stage 6 Alzheimer’s, and I can not leave him long enough to even go to the bathroom. He calls out asking where I am. We have sold our home and moved into a travel trailer to make it easier for his need to be close. The only time he allows me to be more than 15 feet from him is when I am preparing supper. It’s hard not having friends anymore, and family is to far away too. But I know that this too shall pass. Picking up the pieces will be another story. – Judith H.
I had to quit working for 6 years b/c all working + caregiving was was just burning me out. Since we were receiving Housing assistance (sec 8) and SSI, any money I made went to those programs. It just didn’t make sense for me to keep working. And now, my husband and I have been separated over a year, now in the process of getting a divorce, I was forced out of our house, had to move in with my parents, and have been working a part time job training program for the last year, and am doing what I can to find a full time job so I can be on my own… caregiving is hard enough on its own… but the additional financial burdens… especially those ‘helped’ by outdated gov’t programs, can be enough to break the caregiver camel’s back– it’s just one of many things that broke mine, and caused my to get burnt out and for our marriage to fail. But the gov’t doesn’t care about that– they just care about saving pennies now, so they can spend $$ on Nursing Homes in 5 years!!! something needs to change… – Rebecca H.
I quit a job to care for my 90 year old Grandparents. I have done some freelance photography over the 4 1/2 years I have been a caregiver. I took on a temp job last winter for almost 5 months and it just about killed me. It is a constant fight within yourself that you should be able to do more. – Chris M.
I was an HR Director. I thought that job was tough… Nothing like a caregiver when it’s your own family. Wow. – Stefanie W.
I am caring for my 86-year old father (Lewy Body Dementia) & 84-year old mother (Alzheimer’s). I was stressed at work due to my parents still living at home all alone. I resigned from my position at a local high school in order to care for my parents full-time. – Maria C.
Quit work in 2012 to take care of mother in law. Since then, my mom has moved in with us. It is a roller coaster ride. My husband still works, wish I did. I do the best I can, wonder if its good enough… I want to do good, not sure if I am, trying though. No help, just me and hubby doing what we can. – Rita C.
I left the workforce to deal with the VA for my husband. We have had a very long road and this year we have come to find out my husband might have a TBI that has NEVER been looked at. I work more hours now (with no pay or help) than I ever did as a bank teller. – Kristen D.
It’s changed my entire way of life. We ran through both my mother’s savings and mine paying for daytime care while I still worked. Now the two of us try to survive on her Social Security. There is nothing left at the end of the month for even small luxuries–hair cuts, a mani/pedi, a bottle of wine, a restaurant meal, even a soda from a fast food restaurant on a hot day are all things of the past. The stress of trying to find money for a trip to the veterinarian or a home repair, added to the isolation and no respite care make life a pretty unrelenting weight on my shoulders. – Betsy K.
First I tried cutting back my hours. I ended up not being effective at work or as a caregiver. The job had to go. It’s a good thing too as my father-in-law needed more and more care. It was very hard bit it also gave me the time to connect with him in ways that would not have been possible otherwise. His moments of clarity were fleeting but they revealed an innate intellect far beyond my own and glimpses of an extraordinary life. Tough as it was is do it all again. – Bobbi C.
My son was in a car accident in ’04, he has a brain injury with right sided semi paralysis. I took a leave for 8 months to be at the hospital where he was recovering. When he came home I quit my job to care for him 24/7. Family helped a little in the beginning. I almost lost my home, but was able to save it. It can be hard, but it is always rewarding. I love son and couldn’t imagine him being in a home. – Valerie F.
It’s hard, this is my job and I know if I got another I couldn’t care for my mother anymore and they make it harder, I work for the state as a in home care provider but they make it tough for us, always cutting pay or hours but still, I never really get a day off or holiday, it’s an all day task but I love my mother. – Jessica S.
We made $37 over the allotted limit for any assistance, so I ended up signing my house over to the state so I could get home a health aide while I work 50 -55 hrs per week. They’re worthless except they do take care of my wife when they show up (we’re on our 27th home health aide & 7th company). I still have to do everything else which has been pretty hard on me for the past 5 yrs, my family is spread out through out the world and her family which is only 15 -30 min away can’t accept what the MS has done to my wife so they stop coming over and stopped calling which puts everything on my shoulders.- Jerry D.
I gave up my job 30 years ago to care for my newborn daughter with severe needs. We were eventually told that she probably wouldn’t see adulthood. She turned 30 this year! I have been her primary caretaker her whole life. – Mandm M.
I’ve lost quite a few jobs… The worst was the job that said I had to find him another way to get to his surgery and then told me later that same day that I had to choose between my family and my job (but they claim they are family oriented business). I walked out. There are better jobs out there that actually understand what it’s like to caregiver. – Dana J.
I quit my job when I was 4 months pregnant so that I could take care of my quadriplegic husband. Its been emotionally, financially, and physically tough on me and my family. I want to put my son in daycare part time, but can’t afford it. We live off of SSI, but still can’t afford IHHS. – Elizabeth R.I have lost 2 careers in education, a music career and a business in the last seventeen years and haven’t had an income for 4 years. – Melanie H.
Left full time teaching in 1998 to care for my parents …started a new era…lots of work…and joy. – Sheri M.
I’ve been caring for my mother since November 2011 and I haven’t worked since. It’s been very difficult financially at times. I was a 9-5 worker and haven’t really found anything that would allow me to work at nights or weekends other than a nursing facility I just started working at on the weekends to get my business up and running. – Basia M.
I look after an ex boyfriend 24/7 I am pretty much stuck to the house he is at a high risk for seizures and chokes all if given to him by feeding tube. So my life for now is gone. No friends, no family. Its hard but, no one else to do it. – Cheryl M.
I’ve been lucky as my work is understanding. That said… It’s HARD to work outside the home & be a caregiver. I question it almost daily. – Norma C.
Once he was Bed Bound over three years ago there was no way to even keep part time work… Someone to care for him would have cost more than I made at this point. It has been a financial mind field but that is as much to his loss of work as mine. We are now existing on my retirement and his disability from SS. It doesn’t go very far, so we just work at being very very frugal. – Pat F.
Still working full time 6 years in, but because of unreliable hired caregivers who come while I am at work, and no help from family, I have had to quit my 2nd (part time) job and use all my vacation and sick days to cover when they are off. I haven’t spent a night in my own home since mom got sick. I stay at her house and am there whenever I am not at work. Had to file bankruptcy and almost lost my house twice. – Dee M.
I lost a job over it. – Suzanne D.
I had to take extensive time off last year during the summer, and into the beginning of fall, when my middle son had multiple surgeries on his legs (hamstring and heel cord lengthenings, two bone grafts per foot, and femoral osteotomy on both legs). This year I will have to stay home with another child during the summer, because his private preschool doesn’t offer summer school, even though he has an IEP. I’m going to have to do extensive ABA and speech “therapy” with him as best as I can at home. – Amie S.
Yes, it makes the isolation even more extreme and worries about money grow stronger. Hoping to get back on call so that I can work when things are quiet. – Ann C.
I did quit my job to look after my mother and it was hard because I didn’t qualify for unemployment insurance because I quit for no reason according to the government and the other one was the person you are caring for had to die within 6 weeks of benefits… But we made it work for two years until mom passed away 3 weeks ago and now I have to enter back into the work force and at 55 years old companies don’t really want me. I am too young for retirement age and my husband can’t pay for everything so now I have to. – Lorie G.
About a month before my husband found out he had AFib I lost my job. Four months later we found out he had Lewy Body Dementia. I haven’t been back to work since then, largely because I took care of my husband until he died last July. Since then I’ve been dealing with my own physical problems, which occurred as a result of taking care of my husband. I am now 59 years old and I don’t think I’ll ever be able to get another job. – Beth T.
What would be the greatest help corporations and businesses could provide to caregiving employees?