The association of Alzheimer’s with death and dying is perfectly understandable. The disease is fatal and frequently appears in consort with old age, the end of life, separations from family and friends and the loss of vital functions: memory, attention, the ability to speak, swallow or move around on our own. But tying Alzheimer’s too closely to death can suck the life out of seeing people who are living with the disease. It can also diminish their humanity and our own.
One way to avoid these undesirable outcomes is to recognize that Alzheimer’s is not only a prelude to dying (which it frequently is) but also an interlude of living in extreme circumstances (which it always is). The circumstances are indeed extreme, but these define the challenges and losses someone is living with, not the person who lives with them. And the person is defined by how he or she responds to those circumstances, not the fact that they exist.
This way of thinking takes the extreme circumstances of living with Alzheimers or dementia seriously. But it also encourages respect, or even admiration, for people who find themselves in those circumstance and are trying to live their lives as fully as they can.
Seen from that point of view, people living with Alzheimer’s or dementia are not only more fully dimensioned, they’re potentially more interesting and rewarding to engage with. Understanding more about how they are alive–and how alive they are–could temper the urge to separate our “lives” from the “death” we typically associate with theirs. These two steps might restore some humanity to how we think about people living with Alzheimer’s or dementia. They might also enrich the lives we call our own.
Thinking about Alzheimer’s and dementia as extreme circumstances makes that last outcome more likely because we’re already familiar with some of those circumstances in less extreme forms. Who among us has never had a forgetful moment, or lost the physical ability to do something we used to love. Who has not experienced the loss of family members or friends, moments of disorientation and scattered attention, or difficulties in communicating to others something that seems perfectly clear to us? Who has never lost his or her way; or been too sick, tired or inebriated to eat or drink or to recognize someone we know, or too anxious or angry to think or talk without stammering? Who has not shut down in response to an overwhelming situation?
Recognizing moments in our own lives when we’ve experienced something akin to the extreme circumstances that characterize Alzheimer’s or dementia might be frightening at times, but hopefully not for long. None of us will develop Alzheimer’s or dementia from remembering moments when one or more of our essential faculties were diminished. Whether we like it or not, everyone has such moments. If we pause to recognize them as circumstances for whatever came next–and acknowledge their resonance, however faint, with symptoms of Alzheimer’s and dementia–we might develop greater empathy, not only for people living with those diseases, but for ourselves.
Developing greater empathy for ourselves and for people whose lives differ markedly from our own is a significant challenge of our times. Many people have responded to that challenge by practicing some version of individual meditation. Our response though this website is to provide materials that can stimulate a kind of collective meditation. Some of these materials illuminate signs of life within Alzheimer’s or other forms of dementia that are frequently overlooked. Others trace parallels between living with Alzheimer’s and living without it, or explore existential circumstances that challenge us all, whether or not we have developed the disease.
Below you will find two meditations to start with. On the surface, the first has nothing to do with Alzheimer’s or dementia. When read with those afflictions in mind, however, maybe it does. The second one is specific to Alzheimer’s, but is as much about people who don’t have the disease as it is about those who do. Several other meditation posts are available through this website. You can pull them all together here: Meditations OR by selecting “Meditations” in the category search box on the right.
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Amanda Petrusich, “Aretha Franklin is as Immortal as Can Be”
“The eternal challenge is to answer grief with something that resembles love. To choose not just to sit around decrying hardship and injustice but instead to uncurl your fists and approach sorrow with grace, power, and, most incredibly, gratitude—not for the hurt itself but for the whole miraculous mess of being alive, this strange endowment of breath and blood.”
Amanda Petrusich, “Aretha Franklin is as Immortal as Can Be”
In the August 16, 2018 issue of the New Yorker, Amanda Petrusich opened her review and appreciation of Aretha Franklin’s work with the sentence that appears above. I haven’t read anything since that better frames the challenge of thinking through and past grief–over a death, defeat, loss, or Alzheimer’s diagnosis–and back into the stream of life.
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My Cousin Leslie’s Lunch — Thursday, July 5, 2018
I took this photo of what was left on my cousin Leslie’s lunch plate when I visited with her on Thursday July 5, 2018. If we compared it to a photo of what she was served, we’d have a pretty good idea of what she ate.
But even with two photos, we wouldn’t know whether Leslie fed herself or was fed by someone else, whether her eyes were open or closed while she ate, whether she was entertained by playful banter between care givers and residents or ate alone in the quiet of her room.
The photos alone would not indicate whether Leslie took fifteen minutes or fifty to eat her lunch, or what else she ate earlier or later that day and how that compares to the days before or after. Beyond that, we couldn’t tell from the two photos if she enjoyed her meal, or if she struggled to chew or packed food between her teeth and her cheek.
The questions we can’t answer about my cousin Leslie from a photograph or two of her lunch plate suggest only a few of the many dimensions of her life. But they are hopefully enough to remind us that people with Alzheimer’s not only have a debilitating disease, they also have lives to live—and are doing so, day by day and moment by moment, as are we all.