LXIII. The Caregiver Experience

March 19, 2012—I love a good discussion. Therefore, a week ago in my Linkedin Women Writing for (a) Change discussion group, I posed this question: “Caregivers: What are your experiences? As a sole caregiver for my mother, 97, who has dementia, I find care giving to be spiritually life changing, among other things.” These writers’ overwhelming response has amazed me; I am profoundly touched by their experiences and their honesty.

For some, care giving has ended because their loved one has passed on; for others, it continues. I have classified the outpouring of comments into five groups of caregiving: the experience, the gift, alone, family and other thoughts (including the aftermath), and reincarnation. I will thereby dedicate one post to each of these facets.

The Experience

One woman wrote that her “mother ran into a freight train in the middle of the night in the middle of the desert, on her way home from the Los Angeles county fair” and that it took emergency workers four hours to cut her out of her car; she was conscious the whole time. Four days later she died suddenly of a pulmonary embolism. Seven years later her father died suddenly of a heart attack. It occurred to her that she never had to take care of anybody until now, 30 years later, when her husband underwent discectomy of cervical fusion.

My aunt, now 98, living in a nursing facility an hour from our home, was our family caregiver, repeatedly, mostly for those on her in-laws’, my father’s and uncle’s, side of the family. I often wondered how she endured it – driving to their homes, seeing to their needs, preparing meals; but she did: she saw the need and answered it, energetically and cheerfully. Her mind is still good and she misses the old days, misses her ability to get out and do things, to engage in volunteering; she feels as if she is a burden.

Emma cared for her Aunt Mary in her last days, in 1960. I never had to care for anybody until now, caring for Emma; and I missed the illnesses, deaths and funerals of most of my family because they were all here in Delaware while I was living in Los Angeles for 30 years, working and raising my daughter. To be honest, I don’t believe I am cut out for caregiving. Emma pointed that out to me often enough when she still could talk. Our Hospice support team view me as a good caregiver. I bought this house (with Emma) for the sole purpose of caring for Emma in her last days. I am organized and manage all of Emma’s and our household needs. For Emma’s direct physical care, I do the best I can with what I have. That is all I can do. I forget about myself. While I was tending to Emma’s senior citizen matters, I disregarded that during that time, I had become a senior citizen. Now that Emma has quieted, only waking to eat, I have had some time to become reacquainted with who I am; playing my guitar again, for instance.

Another woman bought a home to accommodate her mother who had become terminally ill and remodeled part of the first floor to meet her needs. This woman was teaching at a correctional institution, had a daughter in middle school and a son away at college. The visiting nurses and physical therapists thought this woman had time to follow through with the physical therapy; she did not. She became extremely stressed and thought she would die before her mother did. She found a caregiver family from Poland to take care of her mother while she was at work.

“You want to believe it is stressful,” a woman who took care of both parents for 10 years said. Her mom had Alzheimer’s. No one – not a sibling or other parent – truly gets it unless he or she is a full-time caregiver. “You have to take time for yourself in the midst of all your giving,” she said.

Another’s mom had a partly debilitating stroke at 78. She put her mom in an assisted living facility, but she recounts that her mom’s end of life cycle became “the craziest roller coaster” after that – rehabilitating, followed by a series of debilitating strokes and ministrokes. Her mom, like Emma, went from using a walker, to a wheelchair to being bed bound. Watching her demise was devastating. Once, their Hospice told her that her mom would not make it through the weekend, but she fooled them and lived another six months. They had to give the facility directions not to take her mom to the hospital, which, when she had strokes, traumatized the healthcare aides. She sat by her mom’s side “in the hospital in the middle of the night waiting until I could wheel her to my car wrapped in a blanket to take her back to the facility.” Watching what her mom went through was beyond depressing and stressful, she said; she would not wish what her mom went through on her worst enemy. Her in-laws, independent, in their 90s, with eroding health, seeing what her mom went through, committed suicide together.

While she was undergoing cancer treatment, another woman learned that her mom had Alzheimer’s. Before her mother died, this writer’s sibling was diagnosed with advanced cancer. While she was going through this, her children “flew the nest” and she went through a divorce. Her mother died four years ago. Now she has settled into a happy, new pattern with a “wonderful writing business” and teaches journaling. She believes that journaling got her through all of these experiences. She had to try to learn to navigate a lot during that period. She honors her life story with love, she says, for these ups and downs have taught her what to do for her own sake and for others.

I can tell you from my experience, much navigating goes on, and journaling helps immensely. Sometimes, for me, I don’t know what I think until I write it down. Journaling does help in the present and it helps in review, to see the patterns, to see where you’ve come from and where you’re going. It helps me to see how precipitous is Emma’s decline, too, even though in the present her dementia and my care giving seem to have gone on forever.

—Samantha Mozart