Alzheimer's Self: Or, Who Are You Anyway?

This post from the Nyoho Zen blog really struck me. Especially the opening story.

My grandmother — we called her Oma — struggled with Alzheimer’s before passing away a few years ago. One evening after dinner, during her last Christmas visit with our family, we were sitting around the table — Oma, my brother, Tracy, and I. Oma took a cookie from her plate, held it up, and asked, “What is it?” One of us, in the gentle way that people do, said, “Oma, that’s a cookie.” She looked irritated. Again: “What is it?” We all glanced at each other around the table. This was awkward. This time, one of us started to explain how a cookie is made. “Well, there’s flour, and egg, and this one has chocolate chips.” Then this 90-plus-year-old woman, who in her lifetime had probably baked about 80,000 cookies, shot us all a very lucid, fiery look, as if we were all disappointments. “I know how to make them,” she said. She held up the cookie again. “What IS it?”

And so the four of us found ourselves staring in earnest at a cookie in an old, shaking hand, really unsure of the answer. What was she asking us? We all looked hard at that cookie and said, “Wow, Oma, I don’t know.” That was how we left it.

The author goes on to talk about koans, and the ways in which a lot of folks these days like to toss around big phrases and ideas, but seem to lack a sincere desire to help others, or be of service to what I'd call "our mutual awakening." One thing I've noticed for myself is that I don't leave as many comments about dharma online anymore. I'm less inclined to spend a lot of effort on debates, especially ones filled with heady, intellectual big shotting. One discussion I did recently participate in ended up producing some really interesting stuff. It also included a rather stereotypical, huffy exit from an older, and I'm assuming white male, who was tossing his weight around in ways that felt exactly like what Koun (from the Nyoho blog) described on folks being insincere about koan study.

Anyway, back to the story above, Oma's lucidity reminds me of my grandfather, who also had Alzheimer's. There's something almost time shattering about life with Alzheimer's. On a visit to my grandparent's place towards the end of his life, I remember waking early one morning and coming out to see grandpa in his chair. He'd been mostly gone the day before, but as I stepped into the living room that morning, he looked me straight in the eyes and said "Morning, Nathan. How's it going?" I was a bit startled, since he hadn't really remembered who I was the entire week we'd been there. We went on to have what felt like a "normal" conversation. Talking about the birds outside. Food. Something about an old friend of his that lived down the road. Not an hour later, the rest of the family was up, and eating breakfast together. And the "normal" was replaced by the new normal of don't remember anything.

Moments like that made me question the entire narrative I had about the past. And memory. And time. I have had a few similar experiences during meditation, but for some reason, the shifting in the flesh and blood of my grandfather seemed more startling.

I don't know what Oma was like as a person before Alzheimer's, but it sounds like this fierce questioning about the cookie was a surprise for the author and his/her siblings.

Who is this person? What happened to the person I knew? If this is true, then what does it mean to be "a person" in the first place?

We seem to both hold together in certain ways, and also fall apart - at the same time. Sometimes, the falling apart is drastic, other times it's barely noticeable. But the sense of self most of us cling to really isn't what we are. And that's both liberating and scary. Don't you think?

Holding the Bag of Life and Death

*Gustav Klimt "Life and Death" 1916

My father sent me this essay a few days ago about aging, "unwanted" medical miracles, and the challenges of having a family member with a terminal illness that goes on and on. I had to stop reading it the first time through, my eyes wet, sitting in a coffee shop full of strangers. The second time around, I see all the ways in which death flips the switch on every one of us, turning all "conventional" wisdom and behavior on its head.

Here's a short excerpt from the essay:

I don’t like describing what dementia did to my father — and indirectly to my mother — without telling you first that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.

Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from “The Rubaiyat of Omar Khayyam”: “Awake, my little one! Before life’s liquor in its cup be dry!” At bedtime he tucked me in, quoting “Hamlet” : “May flights of angels sing thee to thy rest!”

Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.” A century later, my mother and I had come to long for the machine in my father’s chest to fail.

Last winter, after what was probably about 10 years of Alzheimer's and a myriad of other issues, my grandfather finally died. I think that, like the woman who wrote the essay, many of us in my family had that similarly odd desire for it all to be over. That last year or so, grandpa had become a young child in an old man's body, barely able to remember the food he'd just finished at dinner. He frequently repeated questions about people who had died twenty or thirty years ago, and wasn't really sure that the house he'd lived in for thirty years was actually his house. He was fond of bright, moving objects and people in the way a toddler is, filled with a curiosity that was matched only by his ability to forget.

Who was this guy anyway? He became, in his final years, a strong, visceral reminder of the lack of a solid, unchanging self and frankly, even as a Buddhist, this was terribly unsettling.

Thanks to advanced medical technologies, elderly people now survive repeated health crises that once killed them, and so the “oldest old” have become the nation’s most rapidly growing age group. Nearly a third of Americans over 85 have dementia (a condition whose prevalence rises in direct relationship to longevity). Half need help with at least one practical, life-sustaining activity, like getting dressed or making breakfast.

My grandfather was 89 when he finally went. The last six or seven years of his life were spent in need of progressively more constant care, primarily from my grandmother. She told my sister once "I hope we go together," but that didn't happen - grandma is still here, experiencing a life alone for the first time in over sixty years.

I can't recall how many "miracles" were performed on my grandfather, but one sunny day a few summers ago, I stood in the center of one of them. Grandpa's blood sugar had dropped to almost nothing and he was barely responding. I was sleeping in the basement of my grandparent's house, only to be woken by the sound of my grandmother screaming out the window, thinking everyone had gone hiking in the nearby hills.

Groggy and confused, I didn't come upstairs until the ambulance arrived in the driveway. Grandma was surprised to see me, said something about grandpa's blood sugar, and then made for the front door.

About fifteen minutes later, Grandma was handed a saline solution bag from one of the paramedics, which they went through some check list with her. She held the bag over my grandfather as the contents slowly dripped into him. I stood next to her, stone silent, with no idea what to do or say.

As they went through the check list, Grandma got more and more animated. "No heroics! None!"

She turned to me at some point and said, "I can't do this any more. Please take the bag."

It was a strange feeling, being handed the very thing that was between Grandpa and death. For a moment, I felt resistance, not wanting such responsibility, but really, there was no place to go.

The whole experience reminds me of Dogen's commentary on the Seventh Precept.

"When the dharma body is manifested, there is not even a single square inch of earth upon which to stand."

Looking down and my grandpa, I thought, "Maybe this is it. We leave for home tomorrow; maybe he's going too."

And then I watched as this bag of clear liquid went into his veins, and within a matter of minutes, he went from death's doorstep to cracking jokes with the medics. It was like a scene from a Monty Python movie, happening in real time, and there I was, right in the middle of it, completely speechless.

What was it that was happening in those moments? What was it to be a man living in a body that had a mind that barely functioned? What was I doing there, holding that bag, reviving someone who couldn't remember I was his grandson?

Even now, I really don't find that any words adequately describe all that was then. In fact, the whole disintegration of my grandfather's memory, and eventually his character (as we knew it), seems like a mystery.

Our minds want to point to that last breath as the moment of death, but there's something about an illness like Alzheimer's that makes such a view feel foolish, even if there is a certain truth to it. If you don't even have a sense of what death is, and how it functions in your life, how will you ever be able to truly die when the time comes to do so?