Friday, October 21, 2016

bad connections

This post is about mom, if you're tired of reading about Alzheimer's--skip it.


I read a book, not recently, but it keeps coming to mind, called The Time Traveler's Wife. In it the husband has a genetic disorder that causes him to travel through time. The couple are repeatedly apart and reunited. Every reunion is fraught with tension as things have changed. Expectations on both sides are thwarted by the reality of what they have experienced while apart. It occurs to me that this story depicts, unintentionally, a good representation of Alzheimer's.

Mom wanders to memories and is shocked when real life doesn't match where she has been. In her mind, for example, her younger brothers are in her care, and if she sees a picture of Charlie or Ralph, or of their kids--who are grown, when in her mind Ralph and Charlie are children, she is flabbergasted and sometimes has to sit down from the shock. It is frustrating and terrifying to her to constantly confront a reality alternate to the one she lives in.

A horrible side effect of this is its impact on those around her. People don't know how to talk mom because the "wrong" thing can spark recognition of disconnect, which can be mild or overwhelming. My kids, who are heroes in my eyes because they do so well with grandma, often feel afraid. They aren't afraid that grandma will hurt them--they are afraid of not handling something well and being responsible for an upset. I can tell them they are not responsible. I can advise them on how to interact with grandma, I can't make them less fearful when they've seen her go from calm to vortex in seconds.

In spite of their fear, they persist in trying to connect. Both kids do jigsaw puzzles with grandma. They take her on walks with the dog to give me a break. They tell her about school projects, papers, experiments. She sometimes asks interested questions and life is good. She sometimes gets caught in a loop where she tells them the same thing over and over. They've begun to recognize trigger words and are experts at avoiding them. They have tactics to herd mom away from talking about embroidering a luncheon set for the school cook, or what Fred Ray named his chickens.

They both know the warning signs of meltdown and are skilled at throwing obstacles in the path of a pending tirade. "Hey grandma, do you want to play _____" They play jacks, Jenga, jigsaw, hot potato" They work in the yard with her, they look at photo albums, they help her with housework.
They've watched endless episodes of Perry Mason (which they both hate--so sexist) and Murder She Wrote (which they hate slightly less--because they are always watching for evidence to prove or disprove my college friend Michelle's hypothesis that Jessica is a serial killer who has gotten away with it by pretending to "discover" the real murderer.) They are experts at distraction--"hey grandma, who is that actor?" And they are fearful.

She often doesn't know who they are. She's asked them where their parents are when I am sitting with them. She'll ask me if their parents know where they are. She tells them to go home because its getting dark. She asks if their parents can come get them. Sometimes she thinks Arthur is my brother, Rodger. The kids understand that grandma isn't herself. But its uncomfortable for them. They come over to mom's less. When they do come over, they talk to her less. They hug her less. They don't mean to--they want to help. They both love their grandma, but they are coming to realize that she isn't their grandma all the time. Sometimes, she's traveled away, and they can't reach her.

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