I remember my Mom telling me, “If Grandma wants to take the car anywhere, you tell her I said you kids are not to drive with her.” That was the early 80’s, back when I was in 6h grade and my sister and I, as we sometimes did in those days, spent the occasional weekend night at our Grandparents house located just a few towns away from our own. At the time my Grandma had been having a series of mysterious blackouts. I can’t recall what kind of frequency these blackouts were coming, just the hazy aura of concern they caused my family. Clearly my Mom had our safety in mind.
How old was my Grandma then? Late 60’s or early 70’s, one of the two. When she announced that early winter morning that she’d like to head over the local mall and do a little shopping, I did as had been requested of me and told her we wouldn’t be able to drive in the car with her. Like most folks, the independence that comes with the kind of mobility a car offers, coupled with the high level of mental and physical confidence necessary to operate one, meant a lot for my Grandma. These are just a couple of the measures with which we rate our independence in the world. To deny my Grandma the right to take her grandchildren along with her in the car while she ran errands was to deny her some of that cherished independence. I can remember her frustration and the flustered decision to walk to the mall instead. I felt awful.
The mall, a strip of popular early 80’s franchise retailers that shored up a monstrous sea of parking (the lot seemed designed to aggravate traffic control problems rather then lessen them) was located about a mile from where my grandparents lived. I don’t remember much about the walk there- it’s a memory deemed unnecessary- a seemingly inconsequential moment lost in the spindrift. I do remember this. When we arrived, I asked if it would be alright if my sister and I went into a U.S. Merchandise located on the strip while my Grandma ran her errand. U.S. Merchandise was one of my favorite stores to visit (and having a mother who has always taken a great and near insufferable joy in shopping for clothes, I spent literal months of my childhood lost in acres of T.J. Max-like square footage) and promised to set my earliest consuming desires aglow with the guarantee of numerous display model keyboards awaiting my perusal within its doors. Giving us her consent, it was decided that we would meet outside in half an hour.
30 minutes later my sister and I waited outside the store for my Grandma. It was late winter and cold. 45 minutes later we were still standing there. When my Grandma met up with us, over an hour had passed and I remember the shock of her scolding. “Where did you go?!” I’ve been looking all over for both of you!”
“But Grandma,” I replied, “you told us to meet you here in a half hour- we were in the store for that long and we’ve been waiting for you here, just like you said.”
Didn’t she remember? What was going on? I remember the oddness of the moment- my sister standing next to me and the indistinct murmur of shoppers passing by- the gross disconnect in communication and the palpability of her panic. She had forgotten.
This is how I remember the beginning stages of my Grandmother’s long descent into Alzheimer’s. Of course, none of us knew she had Alzheimer’s at the time- the disease was just then beginning to gain a foothold on popular consciousness and becoming the household word it is today. A few years later she would forget my name. It was not uncommon, for example, to have her ask, “And what was your name?,” or her other favorite, “And what grade are you in?” dozens of times over the course of a single evening. We always answered, no matter how numb with repetition, as though it were the first time. Never did we say, “But Grandma, you know who we are.” It was quirky, this forgetting, but this is what we assumed happened with old age. By then, too, we recognized that she probably had Alzheimer’s, but I don’t think any of us really understood what that actually meant.
There is currently no cure for Alzheimer’s and very little by way of effective treatment. By the late 80’s my Grandpa could no longer bring my Grandma to our house for supper because, without fail, she would begin to fret about “the children” they should get back to and the sitter they had to relieve. “Well, we really should be going,” she’d say turning to my Grandpa and gently placing her hand on his. She would say this with that lilt of good-natured resignation that comes with the accumulation of a lifetime of gracefully taking leave, only now she would say it within minutes of arriving. We developed methods to hold off the inevitable exit. Her frustration would increasingly mount. First we’d try and explain to her that her children, the very one’s she thought were back home with a sitter, were actually all around her, full grown and with children of their own. We’d pretend to call the baby sitter and have detailed conversations. We’d give her reassurances that the sitter could stay another hour and that the children were fine, in fact, the sitter had just put them down to bed. We’d laugh at all this, no longer needing to mask our awareness of her senility in charade of polite indifference. She was losing her mind and we were losing her presence. My Grandpa would put off leaving for as long as possible before my Grandma, nearly in tears, forced him to leave.
In the months leading up to my Grandpa’s decision that he was no longer able to adequately provide the care my Grandma needed at home (this was sometime in the early 90’s) my Dad would take her on short walks around the neighborhood, leading her like a child by the hand in her track-suit down the street and asking her to tell him the words of objects in Polish, her first language and the one she was increasingly reverting to when she did speak. I had long heard that Alzheimer’s sufferers seemed to move moving backwards in time, becoming more and more childlike as the disease took hold. I thought, too, that the Alzheimer’s-Childhood analogy might also be an anecdote without any validity. Turns out, it’s true. David Shenk’s, The Forgetting: Alzheimer’s: Portrait of an Epidemic, a beautifully heartfelt and eloquent book about a truly horrific disease, describes a 1980 test conducted by the neurologist Barry Reisberg who proved that this wasn’t an anecdote at all and was, in fact, something that could be measured scientifically. Reisberg, a pioneer in the study and understanding of the awful trajectory of the disease, showed that Alzheimer’s, in many ways, “unravels the brain almost exactly in the reverse order as it develops from birth.”
Ever since my Grandma’s death in the mid-90’s, I had been wanting to get a book about Alzheimer’s disease. I wanted and needed to have a better understanding of its history and what we know about it. Shenk’s book, however, turned out to be more then just the decent primer I was hoping it would be- it's one of the finest books I've read this year.
A slim and immensely readable 261 pages, Shenk touches on numerous facets of the disease and its history. Perhaps most impressive is the architecture of the book, a tight weave of historical perspectives, broad contexts and scientific close-ups for the layman. There are powerful accounts of famous people who have suffered the ravages of Alzheimer’s (Ralph Waldo Emmerson, Ronald Reagan, Willem de Kooning, Jonathan Swift, Frederick Olmsted), a fascinating history of the disease and what we know about it (the culprits seems to be an accumulation of cellular debris known as plaques and tangles), a vivid report detailing a March 1999 conference in Taos, New Mexico where over two hundred top molecular biologists from around the world met for a biannual conference- “Molecular Mechanisms in Alzheimer’s Disease,” a vivid and heartbreaking look at a support group for those in the early stages dementia (Shenk writes, Historically, the one saving grace of the disease over the years has been that many, if not most, of the people who acquire the disease do not comprehend what is about to happen to them and their families. Now, for better or worse, that has changed. More and more are learning at the earliest possible opportunity what they have, and what it means.) and numerous fascinating dips into the science of the brain and how it (specifically in regards to memory) works.
What Shenk’s book does best, however, is to tell this sad story with humanity. He never veers into cheap sentimentalism and is himself searching to construct meaning from the disease. There’s no getting around the horror of the disease- the insidiously slow unraveling of the victim’s mind and the stress and sorrow that comes to the circle of family and friends who can do nothing to stop its inexorable progress- but I was surprised and impressed with Shenk’s desire to engage the disease on a deeper level then the suffering that inevitably comes with it. Shenk returns again and again to the problem of constructing a larger meaning from the disease, In the last pages of The Forgetting Shenk writes:
Why are so many people fascinated by Alzheimer’s disease? Because it is not only a disease, but also a prism through which we can view life in ways not normally available to us. Through the Alzheimer’s prism, we can experience life’s constituent parts and understand better its resonances and quirks. And as the disease relentlessly progresses toward the final dimming of the sufferer, it forces us to experience death in a way it is rarely otherwise experienced. What is usually a quick flicker we see in super slow motion, over years. It is more painful than many people can even imagine, but is also perhaps the most poignant of all reminders of why and how human life is so extraordinary. It is our best lens on the meaning of loss.
It may not seem like much by way of solace, but I found Shenk’s struggling to infuse the disease with an affirmative ontological architecture not normally associated with it yet another highly laudable quality in a book already brimming over with them.