Memory Loss

When I tell people about Linda's disease, they almost always ask the same question: "Does she still know who you are?" This is the thing we fear most about Alzheimer's: that the person we love most will no longer recognize us. I have to admit that Linda does still know me. When I enter the room, she lights up, points to me, laughs, and says "You! You!" She recently called me her husband, and others have heard her mention "David," although I haven't heard her say my name in a while. I feel the fear of that time when she doesn't recognize me, of course, and I know people who have gone through that stage and cried a lot. But "Does she still know you?" is a question about me, about the family, not really about the victim of the disease. When Linda reaches that point, her suffering will be mostly over, and she will still be surrounded by loving people, even if she can't name them.

People think of Alzheimer's as a disease of memory, and we encourage this by the terminology we use: the Memory Walk fund-raiser, Memory Clubs, etc. The disease often introduces itself by attacking short-term memory, and for the victim, those early experiences of forgetting are acutely painful. But after living with the disease for a long time, I think of it not so much in terms of forgetting, but forgetting how. Forgetting names and events, but worse, forgetting how to do the simple tasks and activities at the heart of living.

Often, the first thing that a victim of young-onset Alzheimer's forgets is how to do their job. Linda was a legal secretary, a job that requires paying attention to meticulous detail and carrying out complex instructions. Linda began to make mistakes, and her boss noticed. We interpreted the boss's reaction as pickiness, and Linda finally decided to quit. When she left, I was surprised at how easily the boss let her go. Many young-onset patients go through this: they either get fired, or they struggle trying to do simpler and simpler jobs arranged by kind employers. Either way, the result is usually unemployment, just when they need money and health insurance the most.

The next things to go are the more complex tasks of daily living: driving, of course, is the first big problem. Linda's driving became slower and more cautious, with strictly limited routes, even before we knew what the problem was. Even so, giving up driving was accompanied by anger and crying. Luckily, our daughter totaled her own car at just the right time, so we could give her Linda's car "just for a little while".

The forgetting-how continues: how to balance the checkbook and pay bills, how to set the table, how to cook, how to clean the house. Each loss is accompanied by pain, and by increased work for the spouse, who has now become a caregiver. I remember clearly the day that I noticed I was doing most of the cooking, while Linda boiled the rice. How to sew, how to work in the garden, and finally, how to read. Linda loved reading from early childhood, and we usually finished the day by reading in bed. Linda began feeling that her eyesight was going, and she mentioned that her bifocals didn't work right any more. I knew what was happening, but we got a new pair anyway. She wore them once or twice, then we put them away. Imagine looking at the page and not recognizing what the words mean, and knowing that you will never read again! To ease the pain, I began reading aloud. We read several books together that way, and I still read to her, four years down the path.

Forgetting how to read, how to set the table, then how to walk, how to see, how to use a fork, how to roll over in bed. People are surprised when I describe the physical symptoms of the disease. The first thing that my support group joked about was how slowly our spouses walked, how we were all getting sore shoulders and necks from pulling them along behind us, and how a trip through the supermarket took an hour. In the early days, Linda would walk laps around the neighborhood park. As the disease progressed, she became slower and slower. Today, walking to the end of the driveway is exhausting. Her muscles have forgotten the easy motion we use when we walk. Her balance is shaky, and she might slowly pitch sideways and start to fall. And her brain doesn't process the visual input from her eyes, so that depth perception is gone. Imagine trying to walk if you can't really see the floor, and every dark spot might be a hole or a mound. Now imagine going down stairs without depth perception.

Forgetting how to eat with utensils, how to wash, how to put on a shirt or socks or pants, how to sit on the toilet, how to sit in a chair. Today, Linda has to be helped with every activity of daily life. If we are lucky, prompting is enough, but usually Linda needs the help of one or two people to do anything except keep still. This is why long-term care is so expensive for Alzheimer's patients: they need the help of at least one person, and often two people, to do anything at all.

Forgetting how to speak. The Alzheimer's patients that I know almost all have some form of aphasia -- they have trouble speaking. But it takes very different forms in each one. Linda's speaking has become stuck at the level of syllables. She seems to know what she wants to say, and she seems to understand things that we say to her, but when she speaks, she often just repeats meaningless syllables until I respond in some positive way. I always tell her I understand what she is saying, but I never really do!

Forgetting how to eat, how to swallow, how to breathe. A friend once said, when she heard about Linda, "but that's not life-threatening, is it?" Until recently, we didn't often hear that "she died of Alzheimer's." And when we do, we often wonder, what exactly causes death? That is because we think of Alzheimer's as a disease of memory. Forgetting names and events is unpleasant, but it shouldn't kill you, right? When a victim begins to forget how to do things that are necessary for life, then the dying really begins. One of the first of these is often swallowing. Swallowing is a complex process: you have to close the windpipe and open the esophagus, then push the food down. If the brain has forgotten how to control the sequence, the food either goes down the wrong path, or doesn't go down at all. Food in the lungs is a big problem, and so it not eating. So Alzheimer's patients often die of pneumonia, or they stop eating and die from the complications of malnutrition.

So Alzheimer's is a disease of memory, if we think of memory in a large sense: remembering not only of people and places and events, but remembering how to do everything necessary for living. This is the real tragedy of Alzheimer's.