Caring for a Family Member with Alzheimer’s Disease
Editor's note, this post originally appeared on the blog A R E T E
In Memory of Our Sister, Mary Ann Morgan, R.N., B.S.N., M.S.N.
Our mother, Margaret Lyon Morgan, died of a terrible disease, which some have described as “death in slow motion.” It’s called Alzheimer’s disease and dementia. Those who work with dying people realize it is not death they fear but a painful dying. And one of the longest and most difficult endings is for those with Alzheimer’s–and those who witness this process suffer with them, often silently.
Our mother suffered with dementia, probably Alzheimer’s before it was called such, and died nearly fifty years ago. When we think our mother died nearly a half century ago, our minds pause because while it seems so long ago, memories of her remain both before and after she was stricken as if it were yesterday.
Because we lived states away, we returned to see her only for occasional visits. Each time we saw the steady progression downward, with memory and cognitive losses, confusion–and toward the end inability to communicate. It was not easy to see, and probably because we did not see it every day, all the more striking when we did.
In the United States there are some 5 million people with Alzheimer’s and as the population ages there will be many more unless resources are directed toward its cure. Dementia is a broad term that involves brain damage, but about sixty to eighty percent of all dementia cases are Alzheimer’s. It is not a normal functioning of aging. It can persist for up to twenty years as cells die off following the patterns in which they first developed. It’s like the growth process in reverse.
We were so focused on my mother, we often forgot about the caregivers around her, our father and sister especially. We didn’t ignore them but when you have seen a loved one suffering from Alzheimer’s it’s difficult to focus on more than her condition because it is so obvious. My father and sister were players in a plot which drew our attention otherwise each time we returned to where we grew up.
Our mother wanted to be an actress but instead chose the life of raising children and managing the household. She had a remarkable memory; she was able to recite long poems and stories to amuse us and audiences who gathered to hear her. To see her near the end barely knowing her name or us was painful. Did she know who she was? Did she know who we were? When we spoke with her, was she there? Only at times were there hints she might still be inside that deteriorating body.
Our sister had been a nurse and a nursing instructor at colleges in the Philadelphia area. She and our father were the caregivers, but we think a great deal fell on her, given the fact she was knowledgeable about diseases. But as she once told one of us: “Nothing in nursing school or practice ever prepared me for this.” Day after day, returning from a full day of teaching, she took over care from my father, who himself was exhausted. She seldom complained, but it was obvious from her phone calls how difficult this was for her. She once said that nothing she had ever done in nursing was as exhausting as this, and she’d worked on a cancer ward for children in New York City and in a city hospital in Philadelphia.
We tried to help as we could, but what she really needed was respite from the care she was providing not only hospital patients and students but her own mother—not to mention our father who depended on her as well. She once said she told her students it wasn’t the best thing to care for your own family because you cannot always remain focused on the patient as patient, not as parent or spouse or brother. Now here she was not following her own guidance because she felt it her duty.
Alzheimer’s is one of those diseases that is hard to understand unless you have witnessed its devastating impact on a family member or friend. It changes the perception of the loved one, even as you know the outer shell is there, the inner seems strangely transformed. It is a long journey into night, as difficult for the caregivers as anyone could possibly imagine unless you have been a caregiver yourself or seen one functioning in your family. In the last months of her life, my mother was bed-ridden and often had difficult eating or breathing. Our sister once described the last days of our mother’s life, something no one should have to endure, especially because she was a gentle and giving person.
An 18th Century physician, Dr. George de Benneville, whose near death experience changed his life, reported going to the other side and discovering hell in one word: confusion. That seems an apt metaphor for our mother’s descent into darkness: confusion. We were confused, too, not knowing how much she recognized or knew.
What might have helped our sister and father as caregivers were more community supports, at least to relieve them from time to time. Agencies and religious organizations could have helped, but seldom were asked. Some community services are available these days as contrasted to the days my mother lived and died, but these are often not enough and cost beyond what some can afford. What’s really needed is a cure for this disease and a greater sense of urgency to combat it. Some argue it might be possible to find a cure by the year 2020, but only if enough resources are put into finding one.
It’s time to find a cure, for those who suffer from Alzheimer’s but also for those who care for them.
Howard C. Morgan is a retired banker and active in interfaith work. John C. Morgan teaches college philosophy and ethics and is a writer. They are both founding members of ClergyAgainstAlzheimer's.