**My dad is a 74ish… maybe he’s a 75-year-old, with dementia diagnosed about six years ago. His symptoms align somewhat with Lewy Body and his scans show vascular problems. From time to time, I keep track of how his symptoms are progressing. In the beginning, I thought doing so would teach me some secret I needed to know about my dad before he died, some beauty about life cycle. So far, it’s taught me that if I end up inheriting his diagnosis, I need to figure out a way to kill myself, and I need to remember to do it before I get too fuddled to know how. So, I dunno. Maybe this is only the midway of my lesson. Things could still look up, right?**
We visited my parents last weekend, and it was surprisingly peaceful. My father is decidedly more impaired. Most of the time, he floated through the house like an errant balloon – circling my mother, scanning each room like a man who’s misplaced a book, then wandering off to the back bedroom, presumably to sleep. Previously when we show up, he’s wanted to talk, needing attention like toddlers do, unable to settle down until he saw you focused on only him. This visit he only engaged in conversation once.
I tried to speak with him a few other times, but it’s surprisingly difficult to start a conversation with him. Questions like, “How are you doing?” confuse him, and concrete prompts such as, “Did you bike today?” are few and far between. Even these seem to throw him into disarray, as if the concept of ‘today’ must be dug out of a wrecked filing system.
One time I smiled with prolonged eye contact, an invitation for him to talk. He eyeballed me. “What?” he demanded after a moment. Which? Good point, I guess.
Contents of the one conversation: He used to be a good doctor, but he’d had a ‘strake’ (stroke), and his brain, no good. But! (Handing us a workbook on singing lessons) he had a good voice. His mother had put him in (some singing type function as described by hand gestures and broken sentences.) He could be useful by singing.
There have been several iterations of this idea as my father has lost function, so that over the years I’ve understood the core of his personality is a desire to be useful. Watching him hardscrabble to hold on to anything has broken my heart. The worst: he was so proud of having 0 – blood (Universal donor! Saving lives! Going into the hospital again!) but eventually could no longer give blood because he was not able to answer the questions giving informed consent. The nurse cried when she told him.
But for some reason, this time my father’s struggles were not so bad. Perhaps all the earlier versions, I could feel him holding on by his fingernails, the weight of dementia ripping him from the nailbed, his determination to keep holding on. This last visit felt as if he were in free fall. I don’t know if that makes sense. He will always want to be useful. He is so far gone that he can’t hold onto that painful failing for more than a passing moment.
Also on the plus side, he is nonviolent, and although he seems out of it, does not appear to be distressed. Mom says his hallucinations have gotten so frequent and weird (e.g., there’s a man in bed with them at night) that he is more likely to trust Mom’s statement it’s a hallucination, thus limiting their middle-of-the-night searches to prove/disprove hallucinations (this was common when he heard babies crying or an alarm going off.)
My mother is hiring someone to stay with him for 4-hour stints during the day so she can go out and do things. In bittersweet good news, I think she has cared for him until some part of her is satisfied she did her best. I don’t get the whiffs of agony from her that have been present before, but a stronger sense of her boundaries, that she’s going to save some tiny part back for herself.
In distressing news, my funny, sweet, sister Middle (the only one of my siblings who lives in the same town with my parents) has gained quite a bit of weight, and is expressively angry even in casual conversations. There are too many factors at play – stressful job, small kids (one with medical issues), life — for me to say her witnessing the decline of our parents is hurting her health, but I am worried this might be true.
My mother still manages to make dinner for Middle’s family on weeknights, and so they see a lot of each other. This is different than my experience with my mother, who told me I was an orphan shortly after my Dad’s diagnosis came through. I’ve spent a lot of time thinking about why Mom chose to cut me out and keep my sisters closer. On the surface it might seem like she loved me less, but I think some part of it was her trying to save me. Or maybe that’s my mental gymnastics.
But after seeing Middle this visit, I’m reconsidering if I owe something to Middle for staying close to our parents so I didn’t have to. Or if it’s fair of me to pull Middle aside and tell her she doesn’t have to stay. Mostly, I feel like it’s not my place to interfere. I don’t know what Middle needs to get through this. But it’s unexpected to worry she’s being poisoned by approximation to Ground Zero.
I’ve recently found The New Yorker’s fiction podcast, as read by the author, and I have a bit of a crush on Curtis Sittenfeld right now, particularly with her reading style, which seems to convey how she’s in the middle of telling you a subtle joke. Here’s a link to one of her reads, “Gender Studies” which is NSFW. Enjoy!