This piece is a reprint originally published on 15 May 2017. Please click here for the original post. Reprinted with permission.
On April 26, 2017, while lying motionless in her nursing home bed with closed eyelids and a gaping mouth, my 86-year-old mother took two last short breaths before peacefully going still. Her death from complications of dementia and kidney failure brought to a close a nearly 7-year, sometimes rancorous period of family caregiving after my wife and I moved her up from Florida to live near us. We then gradually took over every aspect of her life.
That wasn’t our intention, of course. We tried to preserve her independence for as long as we could. But as she became confused about her pills, fell more often, and wandered at times, we responded by commandeering her pill box, making her use a walker, and hiring legions of home health aides. With nearly every change, she fought us. That made a sad, deteriorating situation more difficult. Living in a nursing home during her last year-and-a-half gave her the supports she needed and allowed us to finally stop battling with her.
As a clinical psychologist specializing in helping families struggling with illness, I thought I had some idea of what I was getting into. But, looking back, I did only partially. Real-life caregiving for my mom was much more personal and perturbing, complex and challenging, gratifying and vexing than my clinical work or academic reading could have prepared me for. Like all family caregivers, I suffered growing pains but learned a great deal. Here are some of the lessons I gleaned along the way:
There’s no magic other than the caregiver’s creativity: There are dozens of helpful caregiver websites and books offering information on diseases, treatments, healthcare systems; insurance and financial management; stress, dread and joy. (Hey, I’ve written many online articles and two of the books.) But because each caregiving family’s situation is so unique in its history, dynamics, and resources, no self-help blueprint can address each pressing crisis. Ultimately, it’s the primary caregiver who has to trust herself to devise solutions for her family’s particular cast of quirky characters and their problems. As my mother’s condition worsened and my own anxiety-level rose, I think I was too reliant on the pat answers that a nurse or case manager might suggest. I needed to be bolder and more decisive. She was my mother. This was our family.
Professionals came through—except when they didn’t: Perhaps because I’ve worked in various medical settings for nearly 30 years and teach communication skills to family medicine residents, I had high expectations for my professional colleagues. Mostly, they were wonderful—empathetic, knowledgeable, responsive. My mother’s internist—like her, a Jewish kid from the Bronx—was a warm balm to her pain and an effective advocate for me. But there were glaring and infuriating examples of professionals failing at even the most basic courtesies for caregivers. To the nurses who talked down to me as if I didn’t know anything about my mother’s condition, I say that you need to assess not just the patient but the level of understanding and ability of her caregivers. To the emergency room physician who failed to call me for many hours to inform me that my mother had been found down in the street and brought to the hospital by ambulance, I say that you do patients a disservice by marginalizing the family members who have pertinent information and a large stake in the medical outcome. To the home health agency administrator who lied to me on multiple occasions about sending a new home health aide for my mother, I say that I only wish I’d fired your agency sooner.
Anger is an unfortunate way to avoid sadness: Given that my mother and I had an ingrained propensity for arguing with one another, it was unpleasant but too easy for us to lock horns over whether, say, she needed a home health aide on Saturdays or required financial supervision. The big picture of her decline was too sad and frightening to talk about so we avoided it by getting angry over caregiving’s small details. The few instances in the nursing home when we were sad together about her progressing dementia made me feel closer to her than I did at any other time. In retrospect, I wish we’d communed more and fought less.
Adversity creates gratitude: The caregiving went on longer and was harder than I expected. But I have few regrets about having been my mother’s primary caregiver. I learned more about her stubbornly independent character as she faced unremitting loss. I learned something about my own character to just as stubbornly work to ensure her safety and comfort. I’m grateful to my wife for sharing the caregiving with me and for our children for supporting us. I’m grateful to my brother and cousins for pitching in. It was a test for all of us as a family. I believe we passed. No victory lap here; my mother’s dead. But our family endures as one that values caring for one another.