his mind is gone...but he still has a rigid schedule.
He is determined...the more he walks, the longer he can walk.
He might be toddling and swaying down the sidewalk...but he is doing it.
Determination.
Grit.Live your best life.
Never mind the 4 layers of clothes in the hot sun!! 😳🥵 He is always cold.
Rob's dementia is getting much worse.
He is now, also on a new medication to slow his involuntary movements. After the last time we tried some was such a disaster, he is on a very very low dose. I think it is helping. He still has TONS of involuntary movements, but nothing like it was. It is still very difficult to sleep with him, as he wakes up in the middle of the night and the whole bed is shaking violently as he twitches and jerks around. But...his movements are less than they were.
His balance is getting worse. He gets back on his heels and tips over...but he is a weeble wobble or the Matrix - he usually manages to stay on his feet and not fall down. He has fallen down in the shower 2 times now - after his shower is done, standing in the bathroom, and blowing his nose. Now...if you ever saw him blow his nose, this would not surprise you. He uses his entire body, violently. He hols the kleenex or tp up by his forehead, leans his whole body WAAAY back, then violently jerks himself forward while blowing. It's really how a mime or silent movie actor would blow a nose. BUT...he tips himself over and lands in the shower. Poor guy. I keep telling him not to blow his nose unless he is hanging onto one of the handles or leaning against the wall or toilet.
The more he falls, the more he decides to "work out" and do "box squats (you've seen the video) and go for walks. He has started wanting to walk before I get home from work. If the kids are not home or busy, he will sometimes take off around the block by himself! This makes me nervous - what if he gets lost? But how could he? We walk the exact same route every day and have the same exact conversations at the same spots every day. "I like this red truck" "I like that Chevy" " I like that Dodge" that's about it. Again, I need to get a caregiver who can take him on his walks when I am not home. It takes 40 minutes to get around the block, but he does it. All the neighbors look out for him. I finally convinced him to stop walking alone because something could happen to him.
In the meantime, it is unbearably hot in our house as usual. I don't want to get out the AWESOME giant window mount ac unit that was given to us and get it in the window. We had a good tax return. I got an estimate for central air. I also need a new furnace and duct work, so woohoo! They will be coming in early July to install it. It can be 78 in the living room and 87 in C's room, and Rob is wearing 3 layers and says "I'm about right. I'm comfortable." - fun Huntington's fact - it screws up your metabolism and you get metabolic diseases - so they are almost always cold. In fact, the last 2 times we had to get our temperatures checked to enter a building (stupid covid), his temperature is low. He sits around 96 or 97 degrees instead of 98.
Last summer, we were not able to do much. Either Rob couldn't do it, or wouldn't do it, and we felt bad leaving him home alone when he's home alone all day. At the end of the summer and start of the school year, it was almost a relief to get out of the house and have an excuse to escape...but we were all so sad and depressed because we had not had a chance to do anything all summer. I decided this summer would be different. We can't stop living. And we can't take care of Rob if we feel like we are being held hostage in our own home. So, besides my hiking escapes, the kids and I have made it a real point to get out together...we hiked a couple times, we have been fishing...so, we hiked into Lava Lake. Of course, it started raining when we got there, but C caught a nice big fish on his 3rd cast. So we turned around and hiked back out. :) ha ha.
Rob has been much more accepting of this. He knows we can't stay home all the time. he knows he can't go with us. He's pretty good staying home alone - it's no different than a weekday. He can do his morning routine, make his lunch, take his long nap, and then we are usually home to get him dinner and spend the evening with him. It has been very beneficial for us to get out. Even if it is just taking a car ride to a ghost town with my mom, or whatever.
I have also been making it a point to get Rob out of the house on a scenic drive in the evenings. We don't go as often as I would like, but otherwise, a typical evening is just to get home and turn on Little House on the Prairie for Rob, feel like i have to sit there and watch it with him, and then be lethargic and depressed and annoyed with him repeating the same phrases over and over. So, I try to give the kids a break and allow myself a chance to get out of the house, and off we go. I know I need to do this more often. Hopefully the caregivers can do that.
So...to get him out of the fog one night, I thought we should play cards. It would be good cognitive and occupational therapy. I wasn't sure how it would go.
As his dementia worsens, he has several phrases he repeats over and over. It is rare to hear a conversation or a thought process. Just the same phrases over and over.
I’m often surprised when he can have a conversation (thanks for listening to him, Michelle) or tell a story, because we are all so used to hearing the same phrases 50 times a day.
Last night was very interesting to watch him.
He kept repeating the same phrases:
“It’s still raining outside” (about every 5 minutes),
"I guess it’s raining outside” (a little variety),
“I like Meals on Wheels” (today is a MoW day – he’s excited),
“I think I ride like a girl” (started this a week or so ago – usually paired with “I wouldn’t mind getting a 3 inch track”- sure, for the 2 short rides up Olson, very slow, on the trail?),
“I like playing 31”,
“you ol’ skunk killer you”
or, “you can have that, you ol’ skunk killer” (EVERY time he laid a card in the discard pile),
or “you kill skunks for fun” (at least there’s a little variety, I suppose),
“I think my taste buds are getting better” (we have no idea, but hear this at least 10 times a day),
"I like family time",
and, since his back was sore from standing on the garage floor in his slippers watching me work, he started saying, “my back hurts from God’s Garden, cuz I sat on a bucket all day” (this was 10 years ago, so??)
"There's a cold breeze" (it can be 90 and he's in 3 or 4 layers of clothing, but he still says there's a cold breeze),
So this is the “conversation” we had the entire time we played cards…
which leads us to believe his dementia is really bad and his brain doesn’t work at all...BUT, surprisingly, he was aware enough to play cards! So…half his brain was working right…
He was slow, but he could play...but all he could say was the same phrases over and over.🤷♀️
Dementia is weird.
Huntington’s is dumb.
God is good all the time.
All the time, God is good.
