Caregiving is complex, confusing, and mostly uncontrollable. When we provide caregiving support, we discover that despite our most valiant organizational efforts we never quite make sense of the situation. Caregivers are never really in control, no matter how well we believe we are doing the caregiving, and we must be comfortable with the situation.
During our years of caregiving support, my husband and I frequently commented that we felt as if we lived in a parallel universe. Yes, we went to work and continued with things in our lives, but his mother — not the two of us, our jobs, or our interests — was the center of our lives.
Yet in spite of extreme frustration and sadness, we carried on, moving through different stages with different feelings as we supported our loved one. In retrospect we are enormously grateful for the strong bonds and inner resources — no doubt gifts from our parents — that enabled us not only to soldier through several years of caregiving but also to look back now on the period with a sense of grace.
Recently I discovered several commentaries on caregiving by Arthur Kleinman, MD, a professor at Harvard University and Harvard Medical School. Dr. Kleinman, a caregiver for his wife, Joan, who has Alzheimer’s disease, writes eloquently about the emotions, the frustrations, the devastation — but also about an inner “moral core” — that forms when a caregiver protects, assists, supports, and goes about caring for another person. He calls caregiving “a foundational component of moral experience.”
The three essays by Dr, Kleinman, two from The Lancet and a third from Harvard Magazine provide a unique perspective of a physician who is also a caregiver.
Hi Marti Once again you are right on top of our pertinent issue as caregivers. You may know that my dad died last week. We are reeling from the suddenness of his death, as we were engaged in a process that stretched behind us and before us endlessly it seemed. We are at the stage of looking back and saying “If only..” and “Why didn’t we…” Thanks for your post. These words of wisdom help.