How did we become family caregivers?
portrait of a family caregiver: elderly latina woman smiling at the camera

A few weeks ago we were talking about how we became caregivers on the Facebook page. I was surprised by how many professional caregivers said they didn’t have a choice in the matter, it just happened. I was also surprised by how many parents and spouses said they chose to be caregivers when there was an unexpected healthcare emergency.

The biggest thing that stood out for me was how many of the people in our community have both provided paid care for work and unpaid care to a friend or family member.

So, how did you become a caregiver? Did you have a choice in the matter, or was it something you just had to do?


I became a caregiver when I realized no one else was going to be able to fill the need.

I taught full-time in a tenure-track teaching position at a prestigious university. As I prepared my dossier to go up for tenure, my dad called to tell me that he had been in the hospital. He had had a TIA or “mini” stroke, but was ok. Meanwhile, my mom’s Alzheimer’s was progressing faster than expected. A week later, was spring break at the university, so went “home” to see the folks. As I walked around their house and saw how poorly they were managing, I knew I had to make a difficult choice.

I walked away from my career and put my life “on hold” as it were to care for my folks. It was a choice, but it was also true that choosing not to help them was not an option.

Andrea


Not a choice an obligation to the ones we love

Maggie


I became a caregiver for my Mother out of choice. Plus it was also a necessity. I was the only family member in the area and just sort of “fell into” the job.  It was never a “job” as I had promised Mom to take care of her.  I was able to do so as I am disabled so was not working.

The Caregiver Space was such a huge support for me, I received so much encouragement and generalized help.  The course the VA sent me through was also a huge help.

Since Mom’s passing, I have become a part time caregiver for my neighbor who had a paralyzing stroke. It is great to be able to help them as they were always there for me when I needed them.

JeanAnn


I became a caregiver for my widowed Father 4 years ago when he was 91. Although I have 4 siblings… no one stepped up and he was not doing well on his own. I was checking on him daily but when we moved out of state for a couple of years we had no choice but to have him come with us… 4 yrs later he is still here. We have moved back to our home state.

Dementia is getting worse and it is a lot harder to care for him. He is getting combative. Everything has to be planned around his needs. My poor husband is really over it. He is retired now and we can not enjoy our retirement. We can not just go out for the day or take a spontaneous trip to see our grandchildren and my siblings still have not stepped up. He does not have a lot of money so hiring help is out of the question… we are paying a CNA to come 3 days a week to bathe him now as he has refused to bathe but says he already did.

Barbara


I started caregiving in 2008. I went to work for a company that cared for folks with developmental​ disabilities. It is a rough field but managed stay for a year and a half. I decided to leave there when I realized my own physical capabilities. I was 57 at the time.

I started caring for mostly for my mom and my dad as his health declined. I made a major move to Colorado for them. My Dad passed away October 2013. I continue to care for my mom today. She is 84 and has physical
disabilities and so far I am able. We lived in my brother’s house and he took care of us. In July of 2014 he had medical issues going on and I cared for him too. He passed away in November 2015. He was the baby of our
family. After helping her settle things there, I moved my mom and I back to New Mexico. Closer to my daughter.

I think sometimes about how much I want to live my life but she would alone and where? I allow myself to feel the anger, resentments​, try to stay positive and do for me what I can. I don’t have the answers. I have a couple good friends in similar situations that are good support. I get up every day and put one foot in front of the other. None of us knows what life brings so it’s best to enjoy something in each day. Life is an adventure.

Thanks for reading and reaching out.

Kathy


I became a caregiver when my wife was diagnosed with Alzheimer’s.

There was no choice in the matter, I did what a husband is suppose to do.

Duane


I didn’t have a choice at being a caregiver. My sister was married with her own family. Since I was single, the duty fell on me to help my dad with mother and now, I take care of him.

Peggy


In my paper (delivered at the Alzheimer’s Association and American Society on Aging) the topic of the “Moral Dilemma of Caregiving” is discussed. The ethical dilemma comes when the caregiver is forced to choose between 2 wrongs. For instance, giving up a source of income to become an unpaid, full-time caregiver.

For myself, caregiving meant moving to our new retirement home and bringing Mother with us, instead of putting her in an excellent facility where I had worked.  I’m still paying for that decision in the lack that social support I have been able to nurture for myself in the new location.

Then Mother died, and my husband was given a terminal diagnosis.  In the space of a year I had lost my jobs, proximity to family, my tribe, my Mother, as well as my identity as an esteemed organist and a geriatric social worker with credentials in assessment and national presentations.  Gone. Now I lead hikes…and read emails on “caregiving”.

Marj


11 year ago my wife had a liver transplant, now we’re told she​ has cancer, plus heart problems. I didn’t ask to be a care giver, it just happened to me. Holding down a job and care giving.

Douglas


Death made me a family caregiver twice. After my father died, my mother struggled, became unsafe, and I moved her to Rochester, Minnesota. My twin grandchldren’s parents died in separate car crashes, and the court appointed my husband and me as heir guardians. We did this for seven years.

In 2013 my husband’s aorta dissected and he had three emergency operations. During the third one, my husband suffered a spinal cord injury that paralyzed his legs. I’ve been his primary caregiver for nine years. Sometimes I think I need a caregiver myself.

Harriet


When I got married I made a choice that I would always care for wife no matter what. Diabetes was newly diagnosed a month before our marriage. Over the years, the diabetes evolved into more and more issues (renal failure, kidney transplant, major stroke, breast cancer and finally seizures. Not once did I doubt my promise or commitment in the forty seven and a half years that we had together.

Bruce


It was something I had to do. My husband’s Atypical Parkinsonism impairs him but not fully enough to warrant outside help…yet. However, driving, dispensing drugs, some grooming/dressing, use of cell phone, tv remote, and computer all require assistance. Add to that the daily, ‘where did I put this,’ (many times a day) AND, last but not least, vision impairment from coincidental right eye retinal vein occlusion and neurological effects if vision in ‘good’ eye
….and you get spousal caregiving. ?

Melissa


I became a part time caregiver for my mother when she had a stroke in 2003, at that time I was working as a Licensed Vocational Nurse and would bring food to my parents and bathe my mother before I went to work during the week and then would go on weekends to care for her.

My father started having symptoms of Alzheimers disease a few years later and I became his caregiver as well. My father passed in 2010 and I moved my mom into my home and I was forced to resign from my job, as I could not find a qualified caregiver to stay with her while I worked.

That was 7 years ago, I continue to care for my mother and her health has continued to decline. This year she had a UTI in January and was in the hospital for a few days, I took her to her doctors office for a follow up appointment  in February and she got the flu, she became dehydrated and was hospitalized. I opted for her to have a feeding tube, but the doctor had to do a Hiatal Hernia repair first, this was a major surgery for a 95 year old. She came home and a few days later developed a bowel obstruction which required another major abdominal surgery.

She is home now and slowly recovering, she has had some TIA’s which has left her combative and confused. I became a caregiver as my parents did not have long term care insurance and could not afford  to hire quality caregivers. I had worked in a nursing home as a charge nurse and had decided that that was not an option for my parents.

I am fortunate that I have the training and knowledge to give my parents loving care in the home setting for many years. This has been a strain on every aspect of my life, my marriage my profession and my dream for further education. I am happy that I had the opportunity to provide the care to my parents, but hope and pray that my children do not have to do the same for me.

Theresa


I became a caregiver when my husband became seriously ill. That was 20 years ago and his health has declined dramatically over time with many added health conditions. I continue to be his caregiver and will be forever.

Linda


I became a caregiver when my middle daughter, Amy, was born. She has a chromosome disorder that has affected her physically and developmentally. She is non verbal and functions like a 2-3 year old. Amy is 33years old and lives at home.

When Amy was 4 years old, my husband and I adopted Ashley. Ashley has cerebral palsy, is deaf and nonverbal. She functions like a 9-12 month old. Ashley is 28 years old and lives at home. As my husband and I get older, the caregiving is getting harder and really taking a toll on us. I love my girls with all my heart but it is definitely hard!

Lisa


I had a choice to become my moms caregiver. It was either me or a home. I
chose me. She needs one on one care all day every day and the best way for
her to have that care , was for me to do it.

Carol

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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54 Comments

  1. My sil said mom was my responsibility

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  2. Barbara’s story is mine

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  3. Started with my grandmother in 2004 who I cared for with cancer now taking care of my mother

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  4. When I think about it now, I think I became a family caregiver out of osmosis. My mum was the one all the family came to, if they had a problem or needed help or advice. I was ” taking cae” of my late aunt’s ” estate” at 14. Then my mum was diagnosed with MS when I was in my jr yr of hs. As she became worse after my father died unexpectedly and she became bed ridden, I became her principle caregiver .I lived at home , worked at 3 jobs but still ddid her caregiving with the help of homemakers” program at the red cross I said it was a privilege and it was . Told her I was returning the favour since she took such good care of me as a preemie.

    Reply
  5. My sister called me and said “Mommy can’t live by herself any more.” We already knew she had dementia, (it had not yet been diagnosed specifically as AD at that time),but until then, she was all right to be independent (and my sister lived about five minutes away). Of course I moved back up to from MD to CT to take care of my mother. I was able to keep her home even getting at home hospice for the last year of her Alzheimer’s Disease. Of course, my income suffered enormously.

    Nonetheless, I miss her terribly and would still be caring for her if she was still here. I cared for her for over a decade.

    Reply
  6. My story started when my dad lost his way to home and our sadness became true he us a teacher in technical schools he became sad and storage and difficult to ask for any thing webecomenow caregivers by rcperince me and my sister’s and mam

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  7. in 2013 I had to quit work and stay home with my wife full time. I am now 54 and scared but things could always be worse. I started a rather large art project called 10,000 Hearts for Gina to raise awareness and educate people about her diseases, CRPS and systemic scleroderma. It has grown into now sharing the works, when we can afford to ship them, to patients and caregivers dealing with these diseases and sometimes other diseases as well. It is very tough but we are in process of starting a non profit to continue the 10,000 Hearts for Gina project as well as work on art therapies and will eventually be doing something specific for caregivers. Every day is a struggle and every moment has fear of an acute issue but as long as she is here, she encourages me to continue and I do all I can when I can. Never knowing what the future has, and feeling the health effects of all the stress, I am committed to take care of my wife and carry on with the projects and do all I can for others as well.

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  8. I would rather look after my own parents, although I cannot afford assistance. So no choice really, If there was just some more support out there, in how to do certain things, where to look for equipment, training…

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  9. My daughter was born with Rett syndrome. She has never spoken or walked and has no purposeful use of her hands. Awful seizures but I willed her into this world and will take care of her as long as possible. 24 yrs strong. It’s hard and sucks but yet it’s a relief that I know no one can hurt her.

    Reply
  10. I was caregiver for my Dad who died with lung and bone cancer. He set it up where Mom got nothing when he passed. I took care of her with Congestive Heart Failure and dementia for eleven years. She was a Saint. My brothers never helped and we raised one one their son. They thought I got paid to take care of her. They have told me after she passed that I am dead in their eyes.
    I would do it all again. Greed is a monster.

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    • I’m so sorry, Donna, for what you went through. You’ll never regret what you did for your parents and are truly an angel!❤

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    • Connie, thank you sweetie. I feel blessed to have had the opportunity. You would have loved her. Everyone loved her. Sweetest soul.

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    • Wow, Caregivers have a certain makeup that not all humans posses. It’s pure love what you did. I hope your life now is filled with happiness.

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  11. They are my adult kids and I’m all they have

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  12. It was a choice we all made….❤️

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  13. I became a full time carer for my daughter since she started having seizures at 10 weeks old and her development stopped. She was later diagnosed with severe cerebral palsy and was dependent on us for every aspect of daily life. We lost our girl 2 years ago at the age of 19, but we also lost a lifestyle and routine. Although you could also say we’ve gained a lifestyle too. Our lives have completely changed. .. it took some getting used to. Would I do it all again. .. definitely.

    Reply
  14. I was 12 years old and came home from school. Found my dad restraining my mom in the kitchen as she had a knife in her hands. She was cutting up the floor as she thought there was monsters under the floor boards. That day we found out she was schizophrenic and my life ended and I become her caregiver. That was 25 years ago and I am still caring for her.

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  15. Mom has lived in my home for 5 years now. She was diagnosed with dementia 10 years ago and could no longer live in her apartment on her own. I had room in my home and in my heart. She’s 91 now and I’m 56. I do worry about finding work when she passes, after this lapse in work history.

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    • You’re going to be alright ❤

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  16. We became care givers because a society can’t provide sufficient or even adequate care for loved ones

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    • Didn’t mention that my father came to live with my family & as a single mother I of course had to continue to work, care and provide for my children as well as my ageing father… whilst doing a degree.. it was tough but I’d rather do that than he live in a care home where staff are not trained in dementia/Alzheimer’s & have little or no idea how to deal with situations…? I could talk all night about my experiences…

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  17. started in 2004 with my grandmother’s having cancer then a few year layers my mother who I’m currently still caring for my my biggest fear is that won’t be in position to give her flowers while she is living or be in a financial position to care for myself properly

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  18. I didn’t want my Mom in a nursing home. She has Alzheimer’s. She worked full time over 50 years of her life. Her savings would only keep her in a home for less than 2 years. She & my stepdad would have to divorce for her to qualify for Medicaid because my Dad has too much land, which was acquired before they were married. So, also out of necessity. I’m 47 and should be working& saving for retirement. But here I am, unpaid, not earning SSI, and getting deeper into debt every day. The system has got to change!

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  19. My sister was married and I wasn’t

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  20. Yes it i is hard work i but miss it

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  21. I chose to be my mother’s caregiver, for I, was all she had! And it was a pleasure in knowing that she was in the best of care any love one can have!

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  22. THERE WAS NO OTHER OPTION….

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  23. My husband and work in nursing home it’s hard. You just do it but you need to take time for yourself. Otherwise you get burt out been there it’s not fun.

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  24. Because we have been called….we are compassionate and loving…not selfish!❤️

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  25. My mom, my now wife & i have become my grandmothers caregiver because her 4 children attempted to destroy her life! I, her grandson have been in this place to rebuild her home, help with her health, & continue the best i can to give my grandma quality of life! Our means have been wiped out, our lives have been takin away, & we are truly blown out beyond more then we could ever imagine everyday! But The LORD is our strength & has helped us. The proof being her health, (my grandma is great), although her mind is gone from Dementia/Alzheimer’s, she is now comfortable the best we can! My heart truly breaks for ALLLLL those who have stepped up as caregivers for i never would have imagined such a position so many would have to take! I pray everyday for each & everyone of these caregivers for help, love, support, strength, & to know you are NOT alone! ❤️❤️❤️

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  26. My son has Huntingtons disease he is 24 yrs old and our world has been turned upside down and inside out I dnt see myself as a ‘carer’ I am a mother first and foremost x

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    • You’re a wonderful mam xx love to you and your boy x

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    • Thankyou my faraway friend xxx

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  27. I been full time unpaid caregiver for over 23 years.
    It started when my dad came into my room and asked a favor to stay home to take care of of my mom who was in the beginning stages of Alzheimers. At the same time my dad was diagnosed with leukemia.
    Now 23yrs later my mom is now in stage 6 Alzheimers. Her Dr now gives her a little more than a year to live.
    I have no regrets but I’m now 53yrs. When I reach retirement I’ll have nothing to live on. This worries me everyday.

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  28. My grandmother was low income, didn’t qualify for assistance of any kind. It was either me step up and provide that care for her or she not get it. And I was not going to let my grandma, whom I loved, and a widow of a WWII war hero not be taken care of. Me or nothing. I chose me.

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  29. It got dumped on me since my 2 sisters wants nothing to do with our abusive mom. The only thing that has changed is I am able to dodge the punches and kicks. Verbal abuse is the same.

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  30. Our parents loved us and took care of us when we were babies……when you put yourself in their “shoes”, the decision is easy. Though it’s often difficult and stressful, it is such an honor to care for our loved ones.

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  31. My mom had a stroke. Left her with hemiplegia. Dad has back problems that make it hard for him to care for her. They raised us now it’s time to take care of them. It can be stressful at times, but it’s learning the next stage in life.

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  32. I was living in Maryland when I got a call from my sister telling me that Mama could not live on her own any more. I moved back up to Connecticut. I made a choice. How do these things happen? We choose them.

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  33. Mom got sick. Then we noticed Dad was also getting sick. Lost Mom last year and still taking care of Dad to the end. It is really a lot of work, I need a long break but, I am getting a week. I have to be thankful for that.

    Reply
  34. I was born, my parents cared for me and never abandoned me. Now it’s my turn to do the same.

    Reply
  35. Simple really, my husband got pd and I am his caregiver/wife.

    Reply

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