I am
reposting this blog, which I wrote in 2012, because of the importance of the
topic. I think my conclusion about reaching out for help is essential.
How
did this happen to me? I never planned to take care of anyone else. After years
of working in editorial offices, I earned a PhD from Stanford and set up my own
business. The Stone Cottage was a writing and editing service for educational
publishers; I specialized in biology, but worked on nearly any program for
science education. My chemical engineer husband was self-sufficient, and we had
no children. We seemed to be doing everything right.
In the
mid-eighties my husband, who already had type 2 diabetes, had a heart attack. I
stopped working for a few weeks to help him recover. Around the same time, my
widowed mother decided to move from Florida to California to be near us. Again,
I stopped working for a while to drive her and some of her belongings across
the country and get her settled in a house she bought. Eventually, our lives
settled down and I returned to my writing and editing.
As it
turned out, my husband’s health worsened greatly over the years. Though he was
well for long periods, every year or so he would have a medical crisis and
enter the hospital for a while. By the time he died in 2003, he had had a
sextuple bypass and several other cardiac surgeries, a cervical laminectomy,
and amputations of a leg and some toes; and was on dialysis. His medical bills
came to more than a million dollars, so even though he was well insured, we had
to use our retirement savings to pay our portion. I cut down greatly on working
to care for him, adding to our financial difficulties.
During
the same period, my mother became unable to live alone, so we bought a larger
home with an in-law apartment where she could live. I was the only caregiver
for both her and my husband, doing the cooking, laundry, and other household
chores.
After
my husband died, my attention focused on my mother, who was in her nineties.
More and more, she needed my help with bathing and other routine daily
activities. In 2005 she entered an assisted living facility, and though I
visited her almost daily, my life became much easier. When she died at the age
of 101, my role as a caregiver ended.
My
slide into caregiving was gradual, as it is for many caregivers. At first it
was a matter of taking my mother shopping, occasionally rushing my husband to
the hospital, and generally being available when they needed my help. Over the
years, though, caregiving took over my life. I had little time for building a
network of women friends or pursuing my individual interests.
Of
course, in a sense I was lucky. Having a home office, I could combine working
and caregiving when the projects were small enough and the deadlines were
reasonable. (Any freelance editor will find that amusing.) If I could do it
again, perhaps I would hire more help, so I could stay active professionally.
As it was, I lost touch with what was happening both in science and in
publishing, and failed to learn the new techniques that are needed for editors
today. Though I have continued to write, I have done so only sporadically. Geriatrics will probably be my last full-length book.
Would
I do it again, given the cost to my own life? Yes! Though professional
caregivers can be excellent, only a family member can provide the ill or aging
with all the loving help and shared memories they need. Caring for my husband
and mother gave me a sense of fulfillment I have never felt otherwise; during
those years I became much closer to them, and found myself becoming less
self-centered. We all benefited from our situation.
However,
I would reach out more for help. Like many caregivers, I was naïve about the
financial aid that is available. I might have been paid at least a small amount
for my time, as my staying home made it possible for my husband to remain out
of a nursing home. We probably could have received Medi-Cal benefits, but
assumed that because we had a nice home and car, we would be turned down.
Instead, we struggled to stay afloat. A social worker asked me once whether we
needed financial help; why was I too proud to say yes? Caregivers’ support
groups were available, and I should have made time to join one. The Unitarian
women’s circle I found after my husband’s death was a wonderful source of
friendship and support, but I could have found it years earlier. If it takes a
village to raise a child, it also takes one to care for those near the end of
life and for their caregivers.
