Hi, I literally just found this place. It’s a bit of a relief.
I’m in a place in my mind that is confusing, because I can’t predict what’s going to happen next, I can’t figure out if it’s him or the disease. One day it’s one thing, then a couple days later it’ll be something else.
He’s had this disease for about 20 years, he’s now 64. And I’m 39. And yep, the pregnancy turned to triplets. So that’s added on top of this disease and I work full time.
I have been journaling things about him for two years, seeing if there’s patterns, anything, to help doctors help him.
It started 15 years ago with stiff arm. And 1 pill.
Because he didn’t tell me about it.
Then 12 years ago he lost his job.
The speech issues started 5-6 years ago, and about 3 years ago he was literally about 75% frozen at night and couldn’t move. He was on 72 pills per day, it was nuts.
I found out he self-medicated.
I finally convinced him to get the DBS.. by the time he agreed, the doctor said it was almost too late. He didn’t qualify for the study because his neuro testing revealed he has 1 percentile visual memory.
After both surgeries in 2016, it was much better regarding not freezing. After the 1st one he had a 3 week grace period when he was normal. After the 2nd, he had 5 days normal.
Since, he has had major mood shifts in the last 18 months. He screams and loses it at the kids, which scares them. He is maybe 50% understood when he speaks. He falls from imbalance every other day but refuses a walker. (He has a cane which seems more like an accessory)
We had an aid for him 2 hours each morning to also help get kids to school, and would help him take walks. But we couldn’t afford to keep it after a year.
I’m a teacher, so now that I’m off for summer, it’s like he relaxed, which means he stopped picking up around the house. He leaves bowls by his chair. (We haven’t slept together in 3 years)
He wore the same shirt for 3 days despite the $2,000 wardrobe we got him.
He shows little emotion.
He refuses to go anywhere.
He won’t go to the boxing for Parkinson’s group.
He won’t go to the library for events.
He won’t go to the health club with me.
He won’t swim either.
He won’t take walks with our friends.
He won’t go to the coffee shop with me.
He stopped writing short stories two years ago.
He just sits all day.
Or does dishes by hand.
We rarely talk.
He says he’s okay. (Dr has him on antidepressants)
It’s as if when I went downstairs to sleep the past 3 years, and cut off sex, then he didn’t care about a damn thing anymore. But he ruined it. For 3 years straight, every night, literally, he would wake me at 2am. We have triplets, they were toddlers. And I’m exhausted. And rejecting him meant I got yelled st. So after 3 years of that, I essentially moved downstairs.
I have a psychiatrist, so at least I get to vent there. But I keep finding myself feeling alone in it. I keep looking for research to tell me where he is, what’s his choice vs not, when it might all end.
And then his mom died. And a month later his brother.
And with children in elementary, and him falling, I can’t protect assets other than buy cars. That 60 month look-back the giver does once you sign up for Medicare/aid? Was too big a risk to do those irrevocable trusts, and we want to protect our home... you know? It’s this never ending nightmare. I’m trying to save for retirement and he’s expensive.
Yeah, I think I’m done typing for now.
I’m just tired.