Whenever I finish a blog entry, thoughts start popping into my head that I forgot to include in the initial entry. So, here’s Part Two of my Alzheimer’s blog:
***I’m going to call my imaginary person with Alzheimer’s “Jane,” to make things easier to write and to read.
It’s important to remember that Jane is still in there, still a person. Some people forget this and talk as though she weren’t in the room, and it’s infantilizing. Talking about “she this” and “she that,” as though “she” weren’t within earshot. We wouldn’t like it a bit and neither does Jane. Get out of earshot, or text, anything but talk about her as though she weren’t there.
More years ago than I’d like to remember, I was part of a medevac that involved a doctor escorting a laboring woman to the hospital via helicopter. He went along to deliver the baby if the attempts to stop her labor didn’t work and the baby arrived midflight. He told me later, “when it comes down to a uterus vs a doctor, the uterus will win every time.”
Alzheimer’s is like that. You can’t outargue Alzheimer’s, it will win every time. Reality as we know it doesn’t matter, the Alzheimer’s reality is the one that matters. If you say, “this or that didn’t happen,” all you do is make Jane angry, because she KNOWS it happened. What you can do, sometimes, is try to find other reasons for what the person believes. Maybe she watched a movie that you can blame it on, or she awoke during the night (so you can blame a bad dream), or you can say that she’s thinking of something that happened on another occasion. Those tricks don’t always work but since they do sometimes, they’re worth a try.
Something that’s still hard for me is to banish the words “remember” or “forget” from your vocabulary. Jane knows she’s forgetful and finds it frightening, so using those words in conversation brings that frustration to mind. If you say, “do you remember,” well, she doesn’t remember and you’ve just upset her. You could replace “remember” with “know,” so the question would be “do you know. . . .” This is a much easier question because while there’s a stigma to not remembering, there’s no stigma to not knowing. Or, manage these things like her altered reality--find a reason she forgot something, or talk as though you hadn’t discussed something earlier. If you’re going to watch a favorite movie but Jane doesn’t seem to remember it, say, “I don’t know if you’ve ever seen this movie, but it’s always been one of my favorites.” If you had a date to go to the mall but she doesn’t seem to be expecting you, say, “I was going to the mall and thought you might like to go with me.”
Something that can happen is confusing what you like with what Jane likes, maybe because of past experience with Jane. Jane may have loved root beer floats in the past, but might not remember them now and might not need them. My little lady has gained at least fifteen pounds in the few months I’ve known her, solely because her family won’t stop stuffing food into her and she doesn’t know to stop eating when she’s no longer hungry. They serve her big portions and then push her to eat some more when she’s finished the first serving; they don’t seem to realize she’s eating because they’re pushing her, not because she’s hungry. Her “I’m hungry” switch doesn’t work anymore. She doesn’t ask for food, eats only when it’s put before her, and then is as pleased as punch with snacks of fresh fruit, so why give her extra food and high calorie snacks? Like those root beer floats. One granddaughter loves to bring Jane treats. She loves root beer floats, so that’s what she brings over, ice cream and root beer. I’ve pointed out several times that Jane is very unhappy with her weight gain, so the granddaughter brings diet root beer, but then she goes along with her family in the disconnect and brings premium ice cream. Jane dutifully has her root beer float, but not with great enjoyment, just because she thinks she’s supposed to.
(Not only does her weight gain make Jane unhappy, it’s causing her trouble getting her pants down in time in the bathroom and so leads to problems with incontinence due to tight pants.)
One of the fun things about Alzheimer’s, at least with my little lady, is that she’s forgotten so many kinds of foods , so she thinks everything is new; she also thinks I’m the most marvelous person for introducing them to her. I’ve helped her discover everything from scrambled eggs to pizza to corn on the cob, all of which she raves about. In so many ways, it’s a whole new world for her and that world doesn’t have to be scary all the time.