by Beth Whitman
One of the things you learn about when caring for someone with Alzheimer’s is intransigence. There is a kind of inflexibility you come up against that appears in all shapes and forms, and from all sorts of unexpected directions. When someone you love is having trouble negotiating the world, you start to notice how uncompromising the rest of the world can be.
My experience with adult day care was an example of this. I tried for a couple of months to get Mom to go to the Alzheimer’s Adult Day Care Center, recognizing the inherent value of these programs, but ultimately it just didn’t work out. The barriers were many at our local center. Some were due to Mom’s nature and her own personal intransigence, while others were the result of what I found to be surprising inflexibility in the system.
When Mom still had the capacity to attend, she was quite attached to Dad and, as always, hypersensitive about being patronized. If someone talked to her like a child, or disregarded her individuality, it didn’t take long to upset her. Conversely, if she were overstimulated by too many people clustered around her or someone talking too loudly or sitting too close, she would simply shut down and pretend to sleep.
To help ease the transition into adult day care, I asked Amy, who was living with us at the time to help take care of Mom, to attend day care with her until she got comfortable with the whole thing. My first surprise was that the day care folks objected to that strategy. I had thought they would appreciate having what amounted to an extra staff person for the day, but they had a rule against it and were not flexible on that score.
So I tried just dropping Mom off, as they suggested, and when I returned to pick Mom up on the very first day, I could tell from her demeanor that it had not gone well. Sure enough, I was met with a staff report that declared Mom had refused to go to the bathroom, refused her eyedrops and refused to use a walker, and then got angry each time someone tried to force the issue.
I found this strange, since these things never happened at home, so I took some time to watch what was going on and to ask some questions. I found a common thread running through all the reported behaviors and reactions. Until Mom reached the very late stage of Alzheimer’s, I never felt as though she didn’t make sense or couldn’t communicate her needs or her desires. I simply had to listen in a different way. I had to watch and listen and observe and truly hear what she was saying with her words, or trying to say, but I had to use all my senses, my hearing, my sight, my sense of touch. I had to look at what she was looking at, or leaning towards, or reaching for. I had to allow her to say what she needed to say, at her own pace so that she wouldn’t feel like her independence and dignity were being trampled on, and then I’d fill in the gaps in her conversation, but never speaking for her. It was always a balancing act, requiring equal parts love, compassion and attention to detail.
The problem at the day care center, it seemed, arose whenever Mom was asked questions that weren’t really questions, and her answers were ignored. This was the kind of patronizing treatment that always upset her. As it turned out, Mom didn’t actually refuse to go to the bathroom — she merely declined when asked, and didn’t like it when the staff tried to make her go. She also declined her eyedrops when asked if she were ready to have them put in. Why make it a question if you’re not interested in the answer? In fact, when we first walked in the door of the day care center, one of the staff members greeted us and asked Mom if she could take her coat. Mom said no, but the woman proceeded to try to take her coat off anyway. I had no idea why this was happening — perhaps it was their interpretation of how to be polite. But the fact remained, it was clearly setting Mom off.
For the record, Mom did, in fact, refuse to use a walker, but only because she had a cane that she used all the time, and it worked just fine for her. For some reason they tried to take it away from her and force her to use a walker. Mom never resisted accepting a helping arm to stabilize her if she needed a little steadying, so it’s easy to understand that she, like anyone else, would not react kindly to having someone grabbing her arm and attempting to guide her when she was doing just fine all by herself. When an Alzheimer’s sufferer is already struggling to hold onto what little control they still have over their lives and their place in the world, how can it possibly help to have staff people disregarding — indeed, disrespecting — that little bit of individual power they have left? I understand there are legal issues — liability for injuries and whatnot — but an Alzheimer’s Day Care Center, it seems to me, should focus more on supporting the last vestiges of individuality in their clients rather than attempting to suppress it. These people’s lives are being stolen by a cruel and relentless disease. The last thing these so-called “aid centers” need to do is hasten the process.
Mom, for example, was most comfortable when she was in the presence of a conversation. She liked to be somewhat involved, but she didn’t like to be the center of attention. Although this was a delicate balance, I would have thought that, once aware of that preference, it would be relatively easy for these caregivers to figure out how to interact with Mom in a way that kept her comfortable.
But I was wrong about that. Too often, even after I explained about Mom’s comfort levels, caregivers would come into the room where Mom and Dad were sitting, ignore my father, lean in close to my mother’s face and start asking loud, intrusive questions. Mom would either pretend to fall asleep or become distressed, verbalizing “Ya, ya, ya, ya YA YA YA YA YA YA YA YA,” until the caregiver would finally back away.
Conversely, whenever a caregiver would enter a room in which Mom and Dad were sitting together, and proceed to have a conversation with Dad, completely ignoring Mom, she would eventually do a similar verbalizing thing: “Hey, hey, hey, HEY, HEY HEY.” Normally I would intervene and ask the person to either sit in such a way that Mom was included in the dynamic of the conversation, to make occasional eye contact with Mom and to address a sentence or two in her direction, or else simply go with Dad into a different room.
Perhaps it’s just that we, as human beings, are all intransigent by nature. We are most comfortable with our own habits, and it is hard sometimes to recognize the habits of others, much less accommodate them. For people with Alzheimer’s, habits are a crutch that they are helpless without, and when their habits bump up against the habits of a caregiver, their only recourse is a reaction that may seem abrupt or uncivil or hard to comprehend, but their communication options have been so reduced by the disease that getting their point across is a struggle.
Communication is different for someone with Alzheimer’s because they need help having the gaps filled in. But we’re not used to listening closely to other people in this society. Conversation is more about getting the next word in and sounding like you know what you’re talking about. Many of us have mastered that fine art of serial monologuing which we disguise as conversation. But this style of communication, where we are most concerned with what we’re saying and far less concerned with what the other person is saying, is confusing and even dangerous for a person who cannot process thoughts.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.