Sunday, August 15, 2010

Typical Dinner at Breck

I went to see Linda tonight, she was her usual happy self, although Bonnie said she had been crying just a few minutes before I got there. She has storms that pass over, and we need to cajole her out of them. She was chowing down on broccoli and noodles. She always said she hated broccoli, but she seems perfectly happy with it these days. Had my usual jovial conversation with Madeline, who is Martin's wife. I tease her about her big black SUV -- she just traded the old one in for a new one, looks to me like they just washed the old one and sold it back to her! Then Iesha came by, another loving caregiver who usually works at the other Breck Home next door. She hugged and kissed everyone in the room -- she had sparkles on, ready to go out with her girlfriends for sushi. After dinner, I got Linda up from her chair. This is always the Moment of Suspense: will she get up on her own, or do we have to pick her up? Tonight I was extremely slow and patient, and she eased forward and stood up -- a triumph! Then the long walk (15 feet) to the living room, with one stop to rest and one stop to dance. I put on the classical station, and Linda sat listening, closing her eyes and humming. She lives in the music. Charlie, another resident, joined us. He just changed rooms, and his TV is not working yet -- bummer -- but he likes the music too. Charlie has Parkinson's, he is lucid but very quiet, you have to lean very close to hear him, but it is always worth the effort.

Monday, September 28, 2009

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.

Wednesday, May 27, 2009

The Shoulder Touch

As Linda because increasingly disabled, housework became too much of an extra burden. I got a flier in the mail from a local woman named Marcela, advertising a new house-cleaning service, so I called her and we made an appointment for a tour of the house and an estimate. She arrived, we looked at the upper level rooms, and then we went downstairs to look at the family room. There, out of Linda's hearing, I told her that my wife had Alzheimer's Disease and could not clean the house. Marcela made a small groaning sound that I had heard before, and she reached out and touched my shoulder. I had known this woman for ten minutes, and she offered spontaneous personal, physical sympathy with a single touch. At that moment, I knew that I would hire her.

Another time, I was at the hospital with Linda. I had called 911 to get help when she suddenly lost her ability to walk, and she was resting in her bed while I talked to the resident. This doctor was a young, pleasant lady named Dr. Slipka, and she had been telling me how they intended to take excellent care of Linda. We sat down by the computer while I told her Linda's history and she asked questions. As I talked, I began to cry, as often happens when I tell the story. She said that it must be very difficult, and she reached out and touched my shoulder. Again I felt that pure transfer of sympathy and love. It turned out that Linda had been suffering from a urinary tract infection, which can be devastating to an Alzheimer's patient and can cause many mysterious symptoms. Later, when Linda was discharged, Dr. Slipka said, "Thank your for the privilege of taking care of your wife." That was two years ago. I don't know how good Dr. Slipka was at diagnosing and prescribing, but I still think of her as a wonderful doctor.

When Linda was living in the dementia wing at Vintage Newport, I ate breakfast with her in the dining room there every day, and visited every evening. During these visits, I got to know the other residents very well. Some of them could communicate well and reacted to my greetings and conversation. Ramona, however, was one of the silent ones. She was usually seen wandering in silence wearing a look of sadness. I never heard her speak.

I don't think Linda realized that her fellow residents were demented. She greeted them all like friends, except the few that she didn't like, and when those approached, she gave me subtle clues, like rolling her eyes or making a little face. This morning, Ramona came across the dining room looking distant and sad as always. Linda turned, smiled, and said hello. As though she was waking from a trance, Ramona turned to Linda, looked in her eyes, and responded to the greeting. She said a few incomprehensible words. Linda responded in kind, and they carried on a little conversation -- I didn't understand a word of it, but they communicated directly. Then Ramona reached out, looked at Linda with great tenderness, and touched her shoulder. What was she trying to say?

The effect of touching the shoulder is electric: human warmth passing from one person to another. It's not sexual, it's not calculated, it just creates an immediate connection and delivers pure comfort. One compensation for our suffering is the deep connection that people are willing to offer, and the shoulder touch is a sign of this connection. Because people have shown me this kind of love, I pass it along to others whenever I feel the need to comfort or connect.

One night I was asleep in the assisted living. I lived upstairs, where the rooms are less expensive. I was awakened from a deep sleep by a loud screaming noise. It seemed like I lay there a long time, trying to figure out what the noise was. I finally decided it was a cat outside the window, and I went back to sleep. The noise kept up, however, and I woke again. This time, I felt like it was not a cat but a person, and I thought someone had to hear this and come to help. But the noise persisted, so I got up, pulled on my pants, and opened the door to the hallway. There, sitting on her walker and wedged into an alcove in the hallway, was Linda, a resident who had been sinking into dementia. She was still screaming and cursing. It was amazing to me that no one else was in the hall. How could the neighboring residents sleep through this? Where were the night-time caregivers? I went over to Linda and she looked at me in utter terror. She apparently believed that she had fallen and was lying on the floor. I approached her, said that everything was alright, and I put my hand on her shoulder. She immediately calmed down as though everything really was alright, and we began to try to figure out what to do. I went back to her room to look, and there was her emergency call button lying on the floor. Just as I was trying to decide on the next step, the stairway door opened, and Mary, the night-time caregiver, came into the hall. I never knew whether she heard the screaming at last and came to investigate, or was just on her regular rounds, but she took over and began to remind Linda about pushing that call button. The next week, Linda was moved to the dementia care wing where my own Linda was living. I will never forget the sound of her screaming or the instantaneous calming effect of my hand on her shoulder.

Tuesday, May 5, 2009


Nick is a tall man with thick glasses and squinting eyes. He travels in his wheelchair continuously, from one end of the unit to the other, into the dining room, around the corner, back to the end, up to the door, into the dining room, up to the other end, all day. Sometimes, Nick stops and says in a small calm voice, "Help. Help."

My friend Martha lost her husband last year, and at the end, she placed him for a while in a small home, with just a few residents. She complained that there was no social interaction, and the caregivers just placed the residents in front of the TV all day.

Activities are a tough concept for a dementia unit. The problem is that activities are exactly what many residents can't do any more. I volunteered one day with the exercise period. First, a caregiver tossed a ball to each resident in turn, and they caught it and tossed it back. That is, those who were able to do that did it, and the two-thirds who couldn't just watched. Linda was in the middle, she was able to bat at the ball, and she sometimes hit it. Either way, she had her usual great time. Then they switched to bowling. I set up the pins, and a few of the residents knocked them down. Noni was the best bowler, which was not surprising. Meanwhile, Nick roamed the halls, opening doors as he wandered. When activity time is over, the TV usually comes on. I know that people who run programs often downplay the television. "We almost never turn on the TV." "We keep the residents so busy that they don't need the TV." But it is very hard to keep a dementia patient busy all the time, and I doubt that the background noise and light of the TV makes much difference to them. It actually might be a comfort, since many of them probably had a TV on most of the time in their own houses. Most of us do! And if we didn't have TVs in the assisted living, what would we do with the old Lawrence Welk tapes?!

Monday, April 13, 2009


My wife, Linda Foster, was diagnosed with Alzheimer's Disease in the summer of 2003. She was 53 years old. She had been showing symptoms for a couple of years before that. I have been living with and thinking about Alzheimer's for six years, and I have gathered many feelings, opinions, and stories along the way. This blog is a way to record these thoughts. Someday, I will share them with everyone.