elderly person with hands over face looking exhausted

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.

woman holding her fists in front of her face looking up

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?

 

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

Related Articles

Cost of Living- Tales of Care Giving

Cost of Living- Tales of Care Giving

This afternoon, I saw an off-Broadway play called Cost of Living, by Martyna Majok. It is a brilliant play that tells the stories of people who are...

Widow’s Peak

Widow’s Peak

She said she had something to tell me but that she was afraid. I reached for her trembling hand, telling her sweetly, naïvely, that it would be...

Staying in touch off of Facebook

Staying in touch off of Facebook

The Caregiver Space Facebook account has received numerous violation notices, accusing us of lying about where we're operating from, spreading...

Popular categories

Finances
Burnout
After Caregiving
Housing
Relationships
Finding Meaning
Planning
Dying
Finding Support
Work
Grief

Don't see what you're looking for? Search the library

Share your thoughts

13 Comments

  1. load of bollocks.we are old and skint.with little help.

    Reply
  2. I think the greatest help would be understanding and showing compassion. Sometimes things happen right when I’m ready to leave for work and I end up being late. Many times I need to take off to take him to the doctor or take care of him if he’s having a rough day. I can do parts of my job remotely. It would be nice if that was counted. I am paid salary so as long as I put in the hours what difference does it make? It is also very difficult to put in work time after a full day at work, come home to care-taking and try to stay up and get the work done. Being expected to do paperwork and research/reading for my job after putting in a full day and night burns me out. I end up having panic attacks and depression. So yes, give me the understanding and compassion you give the workers that have 3 kids and a family. That would be helpful.

    Reply
  3. People don’t totally understand until faced with this. I talk about all this in workshops I do and CAREGIVING: A DAUGHTER’S STORY book. NationaL CAREGIVING MONTH COMING UP..NOVEMBER. …my heart goes out to all these stories and real lives…some states are enacting help for family caregivers financially…check your state status on this….

    Reply
  4. My mom is 87, has dementia from a brain injury she has had since she was a child. I worked at an employer that I had to take FMLA because i was in fear of being fired…it got to the point my job was so stressful and really hated going to it everyday so i quit that job and found me a parttime job and was able to care for my mom better. Everyone thought i was crazy to leave my job but my mom’s care was more important than my job. Life is too short to be unhappy all the time. She was going to adult daycare too and i worked parttime…found a job where they are very supportive of my situation and understand when i need to do something for my mom. Iknow that is so hard to find a supportive employer. Have gone through many changes since my father died in 2008 but have tried homecare, adult daycare, mom also broke her hip in 2011 and had a small stay in nursing home. I never let the thought come to me about putting her in nursing home but now it has come to that point….it breaks my heart that this must happen i feel i have failed my mom somehow but i know its best for her to be safe and to get relief from her neverending pain.

    Reply
    • Chrissy, it sounds like you’ve been an incredibly devoted daughter. Putting someone in a nursing home is often a decision made to ensure someone gets the care they need – around the clock, from trained professionals, in a space that’s designed for safety. It can be tough to hand over some of her care to someone else, but you know you’re not going to drop her off and forget about her. When my grandmother was in a nursing home one of us went every day to keep her company and see if she needed any help. And of course there was still hours and hours of taking care of the finances and checking in with her medical team. You know you’re making the right choice for your mom and will continue to care for her.

      Reply
  5. That is wonderful that you took care of your grandparents and I fully agree with what you said about it being a constant fight within yourself that you should be able to do more, I had to quit my job to help my Dad care for my Mom when she was diagnosed with dementia a few years ago, and I still sometimes feel like I should be working too, but it is just not realistic at the moment. 🙂

    Reply
  6. Wow! Heartwrenching stories. My Mom, Son, and myself, care for my 88 year old Grandmother…who is bed bound, and suffering from Alzheimer’s. The work is hard, the hours are long, and we are honored to care for our sweet loved one. Faith helps us endure. Blessings on all of you wonderful caregivers!

    Reply
  7. Reading these stories made me feel a little bit less alone. This is a tough job…being the only caregiver for my 86 yr old mother. I do all I can to make sure she stays as independent as possible. My job is virtually non existent ( I’m a substitute teacher so not going to work doesn’t get me fired but it doesn’t pay me) The financial worries are constant, but I try to just take things one day at a time.

    Reply
  8. I am the only financial support for my husband and myself. My husband is debilitated by anxiety and bipolarism. I have multiple back surgeries, transverse myelitis with severe neuropathy. I am currently off work without pay, recovering from a cervical fusion. After reading everyone’s posts I just feel so blessed that the company I work for is so understanding. My supervisor goes out of her way to help me when I have doctor appointments or when my husband is in crisis and I have to leave. We struggle financially and I do a lot of juggling with the bills, but I feel so blessed.

    Reply
  9. I am so glad there are others out there. I fell so alone at times. Trying to hold down a 40 to 60 hours a week at my job and take care of my dying husband..He has stage 4 throat cancer and other medical issues. I have a great boss. She let’s me take of him as long as my shifts are covered..but I never know if I am going to come home and fine he hasn’t made it..

    Reply
  10. Thank you for this post. You quoted me, but it was important to read everyone else’s stories too. Caregiving is the toughest gig out there. And until you walk in those shoes, you have no idea. God Bless everyone that does this for family or a friend.

    Reply
  11. I heard my family’s life in many of these stories. I don’t know many people with stories like mine, but now I know they’re out there. Thanks.

    Reply
  12. Because I work heavy industrial construction I don’t qualify for FMLA, you have to work for the same employer for 12 months to qualify. When my husband was diagnosed with stage IIIA stomach cancer, and then 22 days later my father suffered a traumatic brain bleed that has left his dependent and not quite the same person (though I’m grateful he’s still here), I needed many days off from my job. I managed to hold my job through my husband’s chemo and radiation while my dad was unresponsive in SICU, then in acute rehab, then in sub-acute rehab…but just barely. While in theory they understand why I needed to take off to move my dad to another facility or to sit with my husband through 7 hours of chemotherapy, bottom line is they needed me there to do my job. When it came time for my husband’s surgery (the Ivor Lewis esophagogastrectomy), which was complicated by sepsis in his chemo port, they laid me off, they just couldn’t hold a spot for me any more when I couldn’t forecast when my husband would be capable of taking care of himself again. When I went to pick up my tools my boss hugged me and told me he had to fight to keep me on the pay roll on an almost weekly basis. Now the question is how do I take care of my loved ones when I need to travel to jobsites that are sometimes in different states? I used to define myself by what I did for a living, now I’m contemplating how I let that go to be a caretaker.

    Reply

Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.

%d bloggers like this: