In April, my 92-year-old mother died, nearly 10 years after suffering a stroke that had her come under my full-time care for more than nine years. Some readers may recall some of the columns I’ve done about my caregiver role and the five cross-country moves my mother and I made attempting to find a place that mostly worked for most everybody.

So, when friends received the news of my mother’s death, a fair number of them said “now you can get YOUR life back!”

After being told by some for years that attempting to be the Joan of Arc of Caregiving was not glamorous, and after acknowledging that I had considered more than once just what “my own life” might resemble after so many years, I thought a lot about what people think about providing often indescribably exhausting care for more than a few months. Care that definitely can take a very great something away from one’s “life.” I also thought about what makes some not want to provide care, no matter the circumstances. Which is remarkable given that 70 percent of Americans turning 65 will develop a long-term care need before they die, according to a 2019 U.S. Department of Health and Human Services report.

I guess I was “lucky” when I very unexpectedly became a caregiver, as I was single, childless, and in a better life/work position to do so than my two brothers. And for many others facing similar situations. When my mother had her June 2014 stroke, I sped out of St. Paul to live in her Arizona home and supervise her therapy. I felt it was my duty to do so, but my brothers and I also didn’t want to place her into assisted living just yet. A few months later, I brought her back to Minnesota, where I had spent most of my adult life. Quite a few people said I should have put her in assisted living and that I also should have sheltered her money so that if I ever wised up, Medicaid would pay for the care. As was the case for their parents. OK.

The first three years weren’t too bad, as my mother could still do quite a lot. What was probably too much sacrifice on my part was acceding to her wish to make two moves within those three years — one back to Arizona to be near my brothers and try to reclaim her pre-stroke life, the next to my Milwaukee hometown, which no longer felt much like home after my having been away for decades. As such, I brought both of us back to Arizona from St. Paul in early 2020 following the unexpected death of one of my brothers, the onset of the pandemic of then unknown severity, and the signed promise of help from my remaining brother, who said seasonal service to Minneapolis-St. Paul was available out of Tucson’s easily navigable airport. When I could take a break. A number of friends who said the pope should saint me (which seemed as nuts as being called stupid or nuts) were happy I finally made a decision that, tough as it was, might finally work for everyone.

When my mother deteriorated to the point where long-term-care facility hospice was necessary, there were a few people who thought me negligent and said I should haul out the wallet or take out loans to have round-the-clock home care. Once she was in the first of the two facilities she lived in, I really (really) saw the problems of a rapidly aging population in a country that doesn’t provide reliably quality care on a nationwide basis, at home or in care facilities, without individuals or the government going broke. Or nuts. Along with the spectrum of what people do or do not do as caregivers. This included many adult children who almost never visited, and when they did, screamed indecently about the rotten care provided (including one couple who lived in Maine, visited once a year, and told me I was nuts to be there daily to make sure my mother had a sponge bath or shower while paying $8,000 per month). There were spouses and adult children who mostly moved in and took over, without paying and without nursing staff approval. Then there were the nursing staff who were, for the most part, far too overworked, underpaid and under-appreciated to provide consistently quality care.

Those long-term-care facility horror issue stories you’ve heard? Not all of them are wild exaggerations. I started thinking I wasn’t crazy to keep my mother out of a facility for more than nine years.

Since my mother died, some who called me stupid or a modern-day saint asked if I’d do everything all over again. I would, save those two unsuccessful moves. I hesitate to say this, but I now believe that not putting yourself first doesn’t help you as a caregiver. And I should have taken more than one week of vacation per year. But I’ve asked some of these people what they might do if their parent or spouse needs full-time care from someone. I’ve gotten very curious answers, many of them revolving around caregiving while not “losing” their own lives.

And that’s the matter vexing millions of caregivers, current and future. I only hope that one day, someone, or some group, or some government will do something to not only significantly improve the quality of care in long-term care facilities and make it easier for people who decide to provide care at home, but also foster more nuanced caregiving attitudes. It’s an enormous task. Even a 21st century Joan of Arc probably can’t do it alone.

Until then, I’m going to try to get at least some of my life back (something even my mother endorsed). Once I figure out what that means.

I do hope some of it involves getting back to the Minneapolis-St. Paul airport soon enough.

Mary Stanik is a writer and a former St. Paul resident now living in Tucson, Ariz.

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