“She looks just like she always has, but when I come to see her at the end of each day, she’s just not there, there.” – husband of a patient as he described the pain of watching his wife with Alzheimer’s.
One cannot be a doula for very long without getting a patient who has some form of dementia, usually Alzheimer’s. It is the disease of our time as boomers get older and it is tragic and challenging for both the patient and the caregiver.
Being present for both my client and their caregiver is an integral part of the doula role. When I first began to do this work, I fretted about this, felt uncertain, because I thought I needed to “do something”. I soon learned that my presence was all that I needed to “do”. If I arrived at the nursing home to keep a client’s husband company while he lovingly fed his wife dinner, that was more than enough. In our times, many of us do not have the gift of being able to be here now in the moment with anyone. What a gift it is to do that.
Alzheimer’s is a complicated disease; it is a bit like cancer in that there is no one type of dementia and therefore there will not be one cure. 5.8 million Americans had it in 2020 with 16 million caregivers personally responsible for providing and/or paying for their annual care.
In his new book, The Problem of Alzheimer’s, Dr. Jason Karlawish discusses the development of the disease. When Alzheimer’s was identified, President Reagan was making his mark with the notion of small government, bold and damaging cuts were being made to most social programs and there was simply no consideration of adding a new service area at that time. As a result, to this day, there are limited specialists in this area to diagnose and treat the disease and there is no long-term system of care to help caregivers provide for what the patients need. Ironically, President Reagan himself was diagnosed with Alzheimer’s; Nancy Reagan was the person who coined the phrase, the “long goodbye”.
I never cease to be curious about who the person was before becoming ill, what they did in their life, what and who they loved, what were their dreams? Unfortunately, the only history I will know will be the one that someone other than my patient will tell me. That is the tragedy of Alzheimer’s: as Dr. Karlawish puts it, Alzheimer’s is a disease in which we lose our ability to be autonomous, to make choices in our lives, to choose anything, including which stories about ourselves are told.
This is particularly poignant for women, now in their 70s and 80s; many of them grew up in a culture that did not support their independence and autonomy. I remember being so struck by a patient who during the time I worked with her and her husband, no longer spoke except to call for her mom. She wanted me to sit near her and she stroked my hair and said, “I love you”, repeatedly. When I went to her memorial service, I learned that she was a social worker, a fierce advocate for women experiencing domestic violence, as passionate about her work in the women’s shelter as she was at the legislature advocating for her clients. There are thousands of stories like this.
Therefore, I want to help as early on as possible when someone is diagnosed with dementia. If we can do some planning and documentation before the disease progresses too far, we will be able to assure that some aspects of the person’s story, their legacy and their end-of-life wishes can be met. It will be comforting to the person as well as their caregivers. Sadly, because of our culture’s unwillingness to embrace the reality of death, this often does not happen. Hopefully, we can change that by planning together before the disease has become too debilitating. Alzheimer’s creates two patients as Dr. Karlawish notes: the patient and their caregiver. Planning in advance would help ease the psychic pain for patient and family. It calls for a concerted effort on the part of all of us to be supportive of the caregivers and to advocate for changes in the care system.