Art & Parkinson’s
Autonomy & Safety
These are the hard moments – or rather, the soft, tearful moments – when I can suddenly see through the chink in the wall to Hal’s losses. And how they are so connected to my attempts to keep him safe.
Knife Incident
I had been getting ready for bed. I came out and saw Hal in the kitchen with a large bread knife and an apple in his hand. His walker was nearby, but he wasn’t holding onto it. He said he was slicing an apple and that it had been going well. And indeed, only half of the apple was left.
But I didn’t think it was a good idea and I told him so. He bristled and said he really wanted to feel that he could still act on his own and do what he wanted. I said that given his problems with dexterity, I would worry too much with that knife in his hand. He quickly acquiesced. I felt relieved, but so sad for him. It was a full surrender.
We didn’t talk about it the next day and I wondered what was going through his head. But I had been willing to go to the mat over this one. It seemed so dangerous.
Caregiver
I was feeling sorry for myself on my birthday in the middle of the pandemic. I had just been making one of my many resent-lists of how I was needing to spend my birthday. Taking Hal to the dentist, shopping, reminding him to take his meds, cleaning up after him, and so on. So I was singing happy birthday to myself ironically throughout the morning.
At one point, Hal’s caregiver said they were going on a walk to the library. I said, “WHAT???” I went to tell Hal that he couldn't go to the library because of covid. He said they were actually not going to the Library, but to the BookRack (our local bookstore) and that they had curbside delivery there.
I realized that Hal was going to pick up the books he had purchased for my birthday present. I had a sudden flash of understanding that what little autonomy he still had was wiped from him at that moment when I told him he couldn’t go to the library. Not only did he not have the ability to do anything without my knowledge anymore, but he had to have his caregiver accompany him wherever he went.
These occasional bursts of insight into Hal’s diminishing life (that are delivered to me by events like these) are the most painful moments I’ve experienced in our situation – even worse than things that seem as if they would be more painful.
Later in the day, totally unsolicited, Hal said to me, “I used to get really angry when Maureen (his caregiver) pulled my pants up.” She comes around behind him when his pants are slipping down and gives them a gentle tug. “Now,” he said, “I accept it.”