BEING A CAREGIVER

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.