Watching David disappear
We got the diagnosis on Wednesday, July 5, around 10 a.m.
I knew it was coming; I just knew it. He was expecting it as well, but hoping that it was something else.
But it wasn’t. At the age of 56, David, my partner of nearly 30 years, had early onset dementia.
As I said, I knew it was coming.
I’d seen it coming; I felt it in my gut.
I know him way too well not to have known.
I’d met David when we were both living in New York City. I was managing a small bookstore, and he was finishing his Ph.D. in molecular biology.
We moved to New Orleans together and thought of opening a B&B. Instead, David decided to return to law school. The goal was to practice intellectual law, specializing in biotech.
He did it. Within a year of graduating, he got a job offer at one of Houston’s largest law firms.
We bought a house in the Heights before it became “The Heights.” We traveled the world, exploring some of the most interesting places imaginable. We subscribed to the symphony, to the theater, to the opera. He loved Wagner. Me, not so much. It was a good life. But at the end of 2016, I started seeing changes in him, gradual, then more rapid. Glimmers of paranoia emerged. He thought his boss was out to get him. His voice was oddly hoarse. Occasionally he mumbled or slurred his words.
He began falling more often than normal. And even more worrying, he seemed incapable of stopping his fall with his hands. More often than not, he fell on his face.
He was always cold.
Even when the weather got warm, he was cold. At home, at a seemingly reasonable 75 degrees, three layers of clothing were required. In bed, he added a sheet and blanket and comforter. (All of which I moved to his side of the bed.)
He began finding it difficult to use electronics. He got locked out of account after account after too many attempts to log in with wrong passwords. Even using the remote for the TV required reminders on how to pause what he was watching (usually “bad” TV — with a growing obsession for shows like “Hoarders” and “My 600 Pound Life”).
Time management, never his friend, became his enemy. He’d think he’d been at work for hours but in reality had been there only 15 minutes. His ability to understand time — the days of the week, what days are coming up, and when holidays are or were — started to disappear.
He began getting lost while driving, unable to follow directions on GPS or even ones that I wrote out. When he tried to find the office of his new therapist, there were four failed attempts, each of which involved driving around for an hour or two.
Then memory loss made its presence known. He forgot what things are called, or what things do — the difference between the hot water and cold water spigots, for example, or what the microwave timer’s beep means. On several occasions, when working downtown on a Saturday, he parked his car on the street, then spent hours looking for it. He’d forget where he put his phone or wallet, and then, after finding the thing, put it down and forget where he put it.
During this period, he underwent constant tests to find the problems’ cause. Finally an MRI at the beginning of June revealed, with brutal clarity, what was going on. His brain had shrunk in all directions from the skull. Parts, largely in the frontal lobe, had simply disappeared.
And with them, so had parts of David.
Our journey is now in phase one. He stopped driving several months ago. He lost his job last year, for reasons that are apparent in hindsight, and afterward, started his own firm. He still goes into that office.
But he doesn’t actually work there. Instead, he organizes his things, makes arrangements, cleans things up. Probably none of that is necessary, but I think it’s important for him, while he can, to maintain some semblance of normal life.
Our legal work, granting me power of attorney, setting up trusts, is nearly complete. We have begun talking about, when the time comes, whether he’d prefer home care or assisted living.
This week he will begin redoing his will, and making clear his wishes for arrangements after his death.
Because that’s where our journey will end, sooner rather than later. Early onset has no cure.
All I can do is watch and make things as easy for him as possible.
It’s going to be tough. Far tougher, I know, than I can even imagine.
Already I’m stressed beyond belief. I have daily headaches. I’m scared and worried and a dozen other things.
I’m honestly not sure if I can do this. But I have to. I have no choice.