Caregiver's Dispatch

NOT strictly election material -- but something relevant

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A Caregiver's Dispatch

I spent an evening, a night actually, with a man (‘T’) who has alcohol-related frontal lobe dementia. Which means that he frequently acts like his mind has simply ‘flown the coop.’ He wanders a lot—barely sleeps—feels frustrated a lot—talks about ‘going to the club’. Talks about his annoyance with certain people. He’ll point to a male nurse (working at the care facility) and ask plaintively, ‘is this guy brain dead?’

At times he seems to understand everything that’s said and is both cheerful and chivalric. At other times he imagines that you have said something very strange, while he struggles with the zipper on the jacket he just put on again for the tenth time in the span of an hour.

I might say, “T...do you think you might want to get some rest? You’ll feel better tomorrow? Does that sound like a good idea?”

He sometimes responds well to that question, ‘does that sound like a good idea?
But frequently I’ll say, “do you want to get some rest?” and he’ll say, as if repeating to me, but with a look of incredulity, “do you want me to donate further playdough?” The syntax is sensible; you could be talking to an office-mate.

Unlike most office-mates, he sometimes gets up at night and pisses on his furniture, or into a drawer, or under his bed, or somewhere other than the toilet, and he will refuse to be directed to the toilet. One night he peed into a drawer with one of the nurse’s aides pulling his arm. T was laughing as he pissed—seemingly possessed of a defiant child’s joy. Sometimes he gets angry if you try to pull his arm or otherwise touch his body to try and get him to do or mostly not do something. He frequently wanders into other rooms and sits down on the bed where someone is sleeping. Of course, certain patients in the place understand, others don’t.

When he goes into someone’s room, sometimes he’ll just sit on the bed, but sometimes he’ll say, “I wanted to go over some figures with you, do you have a moment?” I wasn’t sure how he came up with lines like this, but then I found out he once worked for IBM.

His frontal lobe dementia is such that he can’t care for himself – he lives within the bubble of an ongoing hallucinatory state. He has been known to take the handles off of faucets when agitated. He has swatted me a few times when I touched his arm in the process of trying to redirect him somewhere. (If he is about to piss on the floor of his room, I try to notify him of other options.)

Probably the most striking incidence that accompanies his disability is his habit of imagining that he is drinking alcohol. He ‘pretend’ sips it very slowly. This usually only happens late at night. He doesn’t have this particular hallucination during the day. He can sit in a chair for a half-hour or more, just sipping, and then also ‘smoking’ and sipping. It would make an interesting component to a video documentary on the topic of alcohol abuse, or for that matter, alcohol-related frontal lobe dementia, or for that matter how helpless people can become in the storm of debilitating illness.

No disrespect to the science of medicine, but T’s brain is oatmeal. He won’t ever return to life as anyone knows it. He and the other facility residents can’t count the days of future freedom they might expect on one finger; they are captives of something absolute, and regardless of who started it, there’s nothing to be done about it now. Still, humble as the circumstances may be, it’s as if the sweetness of childhood—the sweetness of life before drugs—has been given back.

Sometimes, late at night, T gets restless and begins searching for things. When the search gets tiresome, he gets busy with shoes. He always spends time on shoe issues, lacing them up, unlacing them, removing them, putting them on again, changing into sandals, taking his socks off, etc.. In the midst of this seemingly random behavior, he’ll stop and hand me the framed photo from the table next to his bed, an older photo of him and his two children. Two smiling kids and a smiling dad (with a flowery, funny hat); the way things were meant to be. Somehow, we are still entitled a memory of what we miss. Like as not, I can’t prove that he even knows who is in the photo—but when he hands it to me, as he’s done a few times, I ask, “Your kids, T?”
“Yes,” he says quietly. And not much else, but smiling.


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