Daughters said they sacrificed careers when their relatives wouldn’t. Others said hiring help sapped finances. And more than a few found treasured final moments with loved ones despite the overwhelming work of caring for them.
After The Times published a pair of articles on elder care — one about a Connecticut home health aide and another about women forgoing careers to care for older relatives — hundreds of our readers shared their own experiences with the hardships of trying to make the final years of a loved one’s life comfortable.
Many of the readers said they had parents and other relatives who fit squarely in a growing demographic in the United States of elder-boomers who want to spend their final years at home.
Below is a selection of the reader comments, which have been lightly edited.
Sacrificing prosperity for aging parents
What I thought might be a few weeks of caring for my mother turned into four years. A few months after she died, my father deteriorated rapidly.
When I was finally able to look for a job, nobody wanted me. I got a lot of nice words from potential employers, told that I was a hero and told that my reward would be in heaven, but nobody hires heroes and heaven doesn’t pay my bills on earth.
— Linda J. Marshall, Perry, Okla.
Choosing to care for my mom for 25 years influenced every job I took and had a negative effect on my career. I spent very little on myself and all of my extra earnings went toward her living expenses and care.
I handled (and mishandled) her mental illness and numerous physical injuries, which required long recovery times.
I sacrificed my personal life and general happiness in order to do this. I would do it again, too. It was the right thing to do.
— Eric Stein, Toledo, Ohio
I began caring for my mother full time just a few years after getting back into the work force when my children were in elementary school. I have a law degree and used to work in a big firm in New York City. Although my salary was relatively large, as a young attorney I couldn’t afford both child care and housing near enough to be home at the end of the day.
So I left N.Y.C. and my career. I started a new career, one which afforded me some flexibility as a parent.
Just when I was hitting my stride, about four or five years in, my mother could no longer live alone and moved in with me. Neither nursing homes nor assisted living were affordable, even if they were good options for her, which they were not.
I went back to a part-time schedule. At 62, I have not lived up to my earning potential nor have I been able to save enough for my own care when my time comes.
I have daughters, so I suppose the cycle will continue as they sideline their own careers to care for their children.
— Gloria Maphet, Fort Collins, Colo.
I moved back home and took care of my parents for four years until they died four months apart.
They were wonderful people and I don’t regret it. But I put my own life on hold, including professionally, and had to start over from nothing in my mid 30s.
— Suzanne Burke, Savannah, Ga.
Joyous final moments
For nearly 20 years now, I have been the sole caregiver for my wife, who is totally and permanently disabled from a stroke she suffered in 2000.
I too am a virtual prisoner in my own home and now, at 66, certainly not living the life I imagined my retirement would be.
But my wife does not suffer from dementia or incontinence. She knows who I am, and most importantly knows what we mean to each other. That goes far in compensating for the losses.
— Dennis L. Smith, Des Moines
After my mom had a stroke, I cared for her 24/7 until she died in her own home two years later. It was the hardest thing I ever did in my life.
But mom and I had many moments of enjoyment, being together. We laughed. We cried. We were closer than ever before.
— Mary McKim, St. John’s, Newfoundland and Labrador
The high cost of home aides
I went through Craigslist, figuring without an agency taking a percentage, the caregiver and I would come out ahead. This involved me vetting each caregiver using online tools. I was lucky enough to find one caregiver for weekdays. But for weekends? I must have gone through over 30 caregivers, each with a unique set of problems.
I found that one caregiver, for instance, had been smoking crack cocaine during her shift (a house cleaner found her pipe). Another was leaving mom alone for hours at a time (a neighbor noticed). Yet another had an unchecked temper, and punched the weekday caregiver in the mouth, knocking out some of her teeth.
My mother wanted to age in place, so I helped her to do this. But it was a horrific experience.
— Jackie Naiditch, Los Angeles
In the past six years, we’ve had four parents die. All required extensive caregiving. Three had a combination of care from us and eventually nursing homes.
For one, we were able to care for her in her home until the end by tag-teaming with my husband’s siblings and hospice. (She was also the only one who didn’t have dementia, which made her care much easier.)
None had in-home health care aides because we couldn’t afford them. That’s the irony here; even the low wage of $160 per day is way beyond most of us.
— Lauren Holmes lives near Detroit
Anguish and anxiety while caring for the dying
My father had a stroke and I took care of him for the next five years around the clock. The strange combination of tasks mixed with the constant uncertainty creates a level of anxiety that is impossible to describe. I have to applaud anyone who does this as a career.
When you’re related to the person involved, it just sort of happens and you never know for how long (and you do tell yourself, just one more day, week, month, year).
— John Pagan, Highland, Ill.
For only 10 months, I took care of my mother who had dementia. It was not like taking care of a baby.
Often it was a question of getting my mother up to go to the bathroom, or maybe getting five hours of sleep and doing three extra hours of laundry the next morning because she wet the bed. She went through an approximately two-month phase where she got up four times every night.
I thought I would lose my mind from exhaustion. It felt like I had two people in my head all the time, as I was thinking and acting for her every need.
I had quit my job to take care of her in the prime of my working life. I came close to being broke. I had no health insurance during this time. I barely got out of the house. Just getting out to grocery shop was such a relief that I would come close to crying in the store.
— Jessica Newman, Istanbul
I’m the caregiver to my 85-year-old mother. Lucky for me, she’s just come to a point that she needs someone there to cook, clean, mow the yard, etc.
Still, it’s hard work. You watch the person you’re caring for slowly weaken and become frail. That alone is excruciating — to watch someone you love very much slowly grow old and die.
Years ago, when I was 17, my aunt was dying of lung cancer. On her last day, I went into the hospital, with a pack of cigarettes and two bottles of beer.
My aunt was never a big drinker but she liked a cold beer and her L&M smokes.
I went in, sat down and opened her a beer, opened a pack of smokes, lit one for her, and me (I was a smoker then in the late 1970s. Who wasn’t?).
We sat there talking about life and loss over our cigarettes and beer. I told her how much I loved her and how I will always remember her and how much death sucked.
She said, “You will surely grow old and die,” but not for a long time.
She died with me holding her hand.
— James Young, Redmond, Wash.
We continued to work, to raise our two sons and to try to have our normal family routine while going through this difficult journey of seeing the best parents in the world slowly die.
I had to resign in 2016 to take care of mom. Lost income was hard, but losing yourself is worse.
I failed the depression screening in February of 2017 and was told by my doctor I needed to commit myself. I couldn’t because not one family member could commit to taking time off from their jobs to help my mom.
— Martha White, Rogers, Ark.
Using facilities when home care overwhelms
While keeping mom at home would have been nice, in reality, as her dementia advanced, the benefits for her of being at home decreased as she became less able to recognize her own home and get out.
We placed her in a nursing facility after a fall, and she actually seems to be “living her best life” now, enjoying activities and interacting with the other staff and patients. There are limits to what even the most dedicated family members can do in a home setting.
— Amy Raffensperger, Elizabethtown, Pa.
I was unable to carry out their final wishes to live out their lives at home. After 18 months, the care team was burning out and I was having to rely on agencies, which charged $50 per hour.
I moved my parents from their home near Yosemite to a group home around the corner from my house.
Dad died seven days later, and mom eight months to the day after that.
I carry some guilt for moving them, but remind myself that for their last Christmas, my parents were surrounded by family.
— Doug van Aman, Reno, Nev.
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