When we have memory, we take it for granted. Six years ago, if I thought about memory at all, it was as a photograph album, a sentimental depository of our past, where we preserve the faces of those we love and why we love them, the rites of passage, ours and others, our successes, failures, lessons learned — all these combine to form a tapestry that defines who we are. Our pasts are important. Who are if we lose them?
But memory is not just our past — it is also our present. Memory tells us how to send an email, how to get from here to there, to put on our underpants before our outerwear, how to use a knife and fork, even how to swallow. Memory is the ON button for every function we take for granted.
So, past and present, yes. But memory also defines our future. Without memory, instead of growing older as a rational, aware, independent person, we will become one of the millions cared for, dependent on others to make our decisions and monitor our every function. I think we would hate it — but will we know?
That is the mystery that surrounds every Alzheimer’s patient. How much are they aware of what they are losing? When they get angry, as many do, is it anger directed at themselves, and prompted by the fact that — just as a stroke victim struggles for words that are there but won’t come out — perhaps Alzheimer’s patients are infuriated by the awareness that there is something they should be doing, but they cannot remember what or how?
We all worry when we can’t find our keys or our checkbooks. We tease ourselves with the diagnosis of having OldTimer’s DIsease. But the challenges of Alzheimer’s Disease are different — it is not a matter of being able to find the checkbook – it’s remembering how to write a check. With my husband’s diagnosis of Alzheimer’s and the explanation that he had lost the memory of procedure, I realized that memory can be segmented. You may remember faces, but forget how to make a sandwich; stand up when a woman enters the room, but forget who the President is. And the progress of Alzheimer’s through its various stages can be confusing because of that.
There are many websites that describe the various symptoms of the stages of Alzheimer’s. But Alzheimer patients are surely still individuals. To paraphrase Abraham Lincoln, who when speaking about the ability to fool people is quoted as saying, “You can fool some of the people all of the time, and all of the people some of the time, but you can’t fool all of the people all of the time”, Alzheimer patients may have some of the symptoms all of the time; and they may have all of the symptoms some of the time; but it is unlikely that all patients will have all the symptoms all of the time.
Here, I must point out that I am not a doctor, neurologist, nurse, scientist. What I describe are my own observations, based on a very small sample group — my husband, and that of a friend’s husband, two years older than mine, and two years beyond mine in staging. These men shared similar backgrounds and education, the same neurologist and the same diagnosis, and his wife was (as I am) determined to keep her husband at home. As alike as our husbands were, they were not alike in the way the disease affected them. To this narrow perspective, I add years of reading message boards, articles, and books.
This has led me conclude that there is a human trinity — the brain, the mind, and what some might call the soul but I call the essence of a being. I think of the brain as the machine. Parts of it wear out, break down. But even as that is happening, the mind can still be there, still come seemingly out of nowhere, to the forefront. This is the yoyo motion of the progress of Alzheimer’s as I have witnessed it. Every once in a while, someone, that unique human being, is still there.
And that is why I am convince that the soul, the essence of the one I love, will be there until the very end.