Daily I am reminded of how we are never too old to learn. Here I am doing this documentary — ostensibly to share information about Alzheimer’s, dementia and caregiving. And yet every day, I am the one getting the education: learning something new, reevaluating that which I thought I knew, looking at what seemed settled with a new eye. The bottom line—I am constantly realizing I don't know as much as I thought. When you are past the age of feeling like you have something to prove, or are insecure about what you don’t know or what people might think of you for not knowing, then you can revel in the joy of learning. For example, there are a slew of lessons in this Alzheimer’s space about how to live one’s life, having nothing to do with Alzheimer’s.
But first a word about Alzheimer’s. I thought it was pretty settled that once you have a diagnosis, it is pretty much an inevitable slide towards death. There are no effective, long term treatments and no cure. Thus a person with a diagnosis throws their hands up and makes the best of it until that day comes. Except hold on: can’t the very same thing be said about life itself?
From the time you are born, every day is an inevitable slide towards death. Of course we do not know when or from what, but we do know it ends. And yet in the face of this inevitability, nobody throws up their hands and says, “oh well we are just heading towards death, so might as well make the best of it until that day comes.”
Of course no one can predict what life will bring. No guarantee that the final act isn't today… and not ten, twenty or thirty years from now.
So yes, someone with Alzheimer's knows they are going to die, if not from an intervening disease, then from the Alzheimer's. But we all know we are going to die. That does not have to be the end of the show. I am reading several books where people who have been given a diagnosis, get to a place where they take it a day at a time, and adapt to the challenges and contortions that are thrown their way. They fight and they move forward, and they have hope. They no more surrender in the face of a diagnosis, than any one else would in the face of knowing that death is inevitable. No doubt about it, Alzheimer's means, among other things, a loss of memory. Memory is what is lost. Yet rather than than focus on what we have lost, why not key in on what is here today.
On more than one occasion, I have found myself sliding into sad remorse about what has been lost. But I do not go too far down that path. The lesson is to focus on the here and now. Mired in the past keeps you from experiencing the joys and tender mercies of the moment. In this moment, for me, it is in my children who are healthy and happy. It is also in a small, but steady band of loyal friends and family, and a passion in working on something that has meaning.