Sociologists look at all aspects of social behavior as components of social systems. When there is a change in one part, it has consequences for the others. We commonly hear naturalists who view the natural world in the same way. It’s easy to accept this point of view but not fully grasp its implications. For example, I am sure that quite a few people who lost power during Hurricane Florence found themselves saying, “So the power’s out. I think I’ll just . . .” only to realize that whatever they were going to do also depends on electricity. I know that every time I have the slightest injury to any part of my body, I discover how often I use that little finger, toe, etc. Little things really matter.
Over the course of Kate’s life with Alzheimer’s, l have encountered numerous instances of the importance of memory that I didn’t think of before. I am sure other caregivers encounter the same things day in and day out. One of the most common, and seemingly obvious, ones is to give instructions to a PWD with the expectation they will remember what you have told them. This is really easy to do for a long time after a diagnosis. I am sure one of the reasons is because the memory loss is not 100%. At first, Kate was still able to remember most things. As time has passed, she remembers less and less. Caregivers’ expectations don’t change as easily. On the whole, our loved ones continue to appear very normal, and we continue to treat them that way (as though they don’t have dementia). Thus, we often find ourselves frustrated when we should have understood it was our expectations that got us into trouble.
One of the most relevant examples for me right now is the tendency of caregivers to become frustrated when their loved ones ask the same questions over and over. We do this because we haven’t adjusted to the fact that they can’t remember the answers. When our loved ones change, we have to change the way we think. If not, we experience lots of frustration or irritation.
That takes me back almost eight years ago when Kate was diagnosed. Prior to that, I was pretty sure she had dementia, but I hadn’t fully changed my thinking. As a person with OCD tendencies, I found myself irritated by the disorder I saw in her behavior. The moment I heard the doctor tell us the results of her PET scan, I reinterpreted everything she was doing. That alone was worth our getting an official diagnosis. It made me a more understanding husband. That hasn’t meant that I haven’t been frustrated at times. It means that I understood why she was so disorderly and no longer blamed her. I knew she couldn’t help it. That lesson has served me well. Last night at dinner, Kate asked me at least five or six times where we were (the city). That was in addition to the approximately same number of times she asked the name of the restaurant. Each time she asked, I was able to respond as though it were the first time she asked without experiencing any frustration. I could only do that by fully recognizing that she can’t remember. Furthermore, she asks because she really wants to know. If I were in a city or restaurant whose name I didn’t know, it would seem quite reasonable to ask. I also realize that others may not be able to change their thinking so easily. I feel for them. That makes their lives so much more frustrating.
As Kate’s memory has gotten worse, I see new consequences of that loss. In particular, I am thinking of her memory of the various rooms in the house and the location of things in cabinets and drawers. I can’t know for sure what’s going on in her brain, but I’m very much aware of things that disturb my sense of order. For example, several times lately, I’ve noticed she has opened the drawers of my bedside table, taking out a few things, and leaving them on the table top. These are primarily catalogs and various cables and related electronic accessories. It has puzzled me as to why she was doing this. She had never done so before.
Since then, I’ve also noticed that she has been going through other cabinets, drawers, and closets in the house. It’s easy to notice because she never closes any of them. (That can be a problem for someone with OCD.) Yesterday was one of those days when she neglected the clothes I had picked out for her and made her own selections. I found that she had picked out three pair of socks, two pair of pants (but not a top) and taken them to the bathroom next door to our bedroom where she dropped them on the floor. (That’s the bathroom where she fell out of the shower the other day. I’m trying to steer her away from that one to our bath.) She had taken two towels off the towel racks and threw them on the floor as well as two others she had taken out of a cabinet. I took her clothes back to her room to put them up. When I did, I discovered all the cabinet doors were open in that bathroom.
All of a sudden it hit me. She’s not randomly opening drawers and cabinets. She doesn’t know where her clothes are and often doesn’t notice the clothes that I have picked out for her. That’s true even though I have carefully placed them on the chair next to her side of the bed. Now I see her behavior as quite logical. She’s looking everywhere that one could possibly put clothes. Sometimes it doesn’t take her long to find them. That’s when she opens fewer drawers. Other times it takes a lot of searching.
This also reminds me of something that seems to be getting increasing attention lately. Most of us have heard that anger can be one of the symptoms displayed by someone with dementia. Some authorities say that is inaccurate, that anger and displays of aggression are not direct outgrowths of dementia at all. Instead, they suggest that the symptom is the PWD has misunderstood the situation. Thus, if we were to interpret the situation in the same way, we might think anger is a reasonable response.
I don’t pretend to be an authority on this matter at all, and, fortunately, haven’t had to deal with anger. I do believe, however, this is just one more example of how differently we might interpret and respond to the behavior of a person with dementia if we had a better understanding of the disease. All of us are in the learning stage, especially those who are dealing with a recent diagnosis.