Wednesday, September 14, 2011

The Song Goes On While the Lyrics Fade

We’ve been lucky. Tom’s Alzheimer’s has been progressing slowly. It began with simple forgetfulness – at least we thought it was simple. Since his diagnosis in April of 2006, he has continued to function almost normally, except that events and conversations have a shelf life of only a few hours to a few minutes in his memory. He has stayed physically active, reads voraciously, and plays chess online. Most of all, he has been happy. I know that seems strange given that his life is so greatly effected, but he has always been a man of few needs and one who prefers quiet routine. He likes the daily predictability of knowing his surroundings and activities do not change. That's just about perfect for an Alzheimer's patient.

Every so often we hit a milestone, a place where I can identify that something has changed and needs to be addressed. Early on it was clear that he could not manage our financial affairs, as he grew very confused over using Quicken (a program that was second nature to him for many years). A few years ago I realized that his driving days needed to end. He never argued or resisted because he knew that driving required fast reactions and calm response to crises. He has lost his ability to make quick decisions – ok, he never was very good at that!

Now we have reached another ‘milestone’, though it seems more like a stumbling block. Our chief entertainment, given the size of the town and our predisposition to being homebodies anyway, has always been movies from Netflix. Reliable diversion just a mailbox away, with the universe from which to choose. Our after dinner activity has now become a major source of frustration for him...and for me. It may be because of the nature of new movies these days – complicated plots, fast action and rapid dialogue. But coupled with his declining ability to track and comprehend, it has just become too difficult for us both. He becomes bored and distracted but continues to ask me who this or that person is, what year was this made, etc. over and over until I eventually invoke my opera voice, leaving us both upset with me! True, there are old movies that are not so complex and favorites from our own library, which he likes to say seem new even if he knows the dialogue by heart. Those are our ‘go to’ choices now, that leave him smiling not frustrated. Tonight it might be “Casablanca” night again just like it was a week ago. Hey, Bogie is always good even if the words of “As Time Goes By” feel a bit must remember this...

The main point has always been doing something together, spending time enjoying an activity. Sometimes it is sitting on the patio watching the sunset with a glass of wine. The dialogue we have shared over our nearly thirty years together has been the glue in our relationship. Talking, planning, debating, arguing – conversation has always been intimate and satisfying. Now we mostly banter because there is no context for an ongoing discussion. And he doesn’t miss it. He’s just happy. That is a very good thing. And I know it won’t last.

A steady stream of specialists has examined, prescribed and puzzled over him, none liking to admit that there is not much they can do medically. But one wise and caring doctor, a professor at U of A, said this: “Go home and do what you love, and be happy for as long as you can.” That’s what we are doing. I wish for more strength, more patience, more nobility, but I settle for just making it through another day. I don’t want to lose myself but I especially don’t want to lose him. Much of my poetry of the past few years has been written in the angst of watching him fade. There are no words to express how painful it is. Meanwhile, we play with the dogs, listen to great music and watch sunsets. There are worse ways to live.


  1. It's odd to read of such milestones in your home as they contrast with the ones in mine. Your accounts are so vivid, and would be even if I didn't know you both so well. You are so lucky to have each other--and I so love you both!

  2. Sending you both lots of love <3