S3: Fine Line - Episode 28 - Michael L

[Intro Music]

Narrator:  Welcome to Season three Fine Line narrative histories about mental health and mental illness, a traveling exhibition and weekly podcast edited and hosted by Michael Nye, supported by Kronkosky Charitable Foundation. May you find insight and understanding in these voices. Episode 28, Michael L.

Michael L.:  Dementia in my family goes back, uh, at least two generations, and I worry that I may become demented. Um, knowing that it happened to my grandmother, knowing that it happened to my father, I’m concerned that it may happen to me. You know, I’ve told my family that if I can’t feed myself, then it’s fine to withhold food and let me, let me go. We joke about it. If my wife tells me something and I’ve forgotten it, the the stock answer in my family is, is it time to withhold food? ,

What is Alzheimer’s disease? What’s gonna happen next? I couldn’t find my keys the other day. Does that mean I’m becoming demented? Why is this happening? Oh, I absolutely believe that dementias are a mental illness. Uh, they’re a primary disease that affects the brain, and it robs people of their ability to make decisions and to be in charge of their life. It robs them of their identity and their individuality, and in a, in a cruel way. Uh, it, it winds people down into dependency where they have to rely on the human kindness of others to take care of them. The last six months of my dad’s life, he was institutionalized in a dementia care center. He was always a man who was very proud of his appearance, but he became more disheveled. Uh, his hair was unkempt, uh, couldn’t shave himself as well. Uh, he couldn’t speak, uh, clearly. Uh, he would make sounds like la la blah, blah, blah, blah, blah, blah, blah, blah, just outta frustration because the words would not come. He, uh, he just looked sad. Uh, he would, you know, sit back and have his head down and, and, and be withdrawn, you know, was just locked in to, uh, to this world.

Alzheimer’s disease is a form of dementia, and it’s a bit of a wastebasket term. Uh, it’s a primary dementing disorder, pathologically, you can describe it as observing the death of neurons in the brain, and you can see these plaques and tangles of precipitated amyloid in the cells. So that’s, that’s what it is. But nobody knows what causes it. As a geriatrician, the the things that I know now that I didn’t know the first couple years is the importance of listening, the importance of being present. And I also understand the importance of caring, even when you can’t do something actively. I think lots of times doctors, if they don’t have something specific to offer, to treat something, to do something, feel like they may have failed. But the real challenge is to still be able to care about somebody as a human, and to nurse them and, and minister and doctor them, and to help people where they are. When my time comes, I really do hope that if this happens, that I am, I’m able to approach my, my death with grace and acceptance. I hope that I’m not a burden to my family. You know, I’ve, I’ve taken care of patients who’ve lived for 10 years inside of nursing homes and who’ve looked at me and said, I think God’s forgotten me, because they’re just ready to go, and yet, every day they wake up and they’re still here. I really do hope that I can just be allowed to die, and my family can allow me to die without trying anything heroic in the face of, uh, in the face of futility.

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Host:  Michael is a friend. He is the best of physicians, so present with his patients, a person that listens with enormous care and kindness. I appreciate that. Michael also talked about his own family history. Going back two generations, his father and grandmother were both diagnosed with Alzheimer’s disease. Thank you, Michael, for your voice, your wisdom, and your presence. Every person, every place is a map That’s somewhere else. I’m Michael Nye. You can go to my website, michaelnye.org/podcast. For Michael’s portrait and transcript, thank you for listening.