It took me a week to post the April 12th update.
I’m worried it sounds like I am complaining about my
husband.
I love Rob. Very much.
But the truth is, about 95% of the time, he
is “gone.”
He is lost in his mind somewhere.
Some minor changes in the past week are just changes to his
phrases.
Yesterday I was pleased that his new phrase seemed to be
asking me if I needed help doing chores. He repeatedly asked me! I would think of something he is capable of
doing, ask him to do it, and he would not answer or respond. I would repeat it. No response.
And yet again…no response. So, I
would just do the chore. An hour later,
same exact conversation. By the end of
the day, he asked for what had to be the 10th time and I said, well,
I asked if you could try to do (list of things), but I took care of them.
He is still thanking me multiple times a day for his haircut
and smoothies and socks. He still tells
me whatever kind of bird he sees in the yard, but struggles to come up with
their names. He can remember Robin, so everything
is either a robin or a morning bird, no matter what it might be. Tonight he decided the fat robin was the lady
robin because she is fat. I asked him
about deciding someone is a lady just because they are fat. He said she is only fat because she is
pregnant. (????) Also the man robin has
a Mohawk from flying into the window (??????) okay.
He stumbles through the house, struggles to sit in a kitchen
chair, has fallen on and broken the toilet several times….but has now decided
he needs to buy a dirt bike!!! Oh, Dear
Lord, help me. I always have to be the
bad guy and explain to him how bad his symptoms are. He has no idea. His involuntary movements are fairly extreme…but
he does not know that. He is wearing a
hole in the carpet from kicking his left leg up and down all day long, but he
does not know that. He tells me how hard
he works out doing “box squats” every day…but…he is mostly rocking back and
forth, barely lifting himself off the couch.
Here is a video to demonstrate.
He does not know. He thinks he is doing box squats with perfect form.
I am not complaining about what he is doing
or not doing…I am trying to explain how he is completely unaware of the
majority of his symptoms. And then with his cognitive declines, it is like
arguing with a toddler. He WANTS a dirt
bike. I know he is not capable of riding
one.
I am tired of always being the bad guy and telling him that,
yes, you are a very skilled and experienced rider, but your Huntington’s symptoms
are too bad for you to do these things anymore.
After we got him out snowmobiling, he asked if I saw him “jumping
those drifts”…oh…he has no concept of reality…he drove, very slowly, over some
drifts…he never jumped any. Not anymore. Back in the day, yes – he jumped
everything. But…not now.
HS drew a special elk permit. Several times a day he says, “I wouldn’t mind
shooting a bear” and “are we hunting at **secret location**?” I know what he is thinking. He wants to hunt a spot where we have seen
several bears. But…he can’t hunt! He cannot walk that far. He is not capable of sitting still and
waiting. He isn’t capable of being out
that late or being that cold. He is not capable of sitting in the truck waiting
for us. He is not capable of hanging out
in camp while we are hunting, and even trying to camp with him gives me
anxiety. All of the things he can’t do
or struggles with at home every day will only be magnified there. He can barely shuffle to our bathroom in the
middle of the night…how can he shuffle across a clearing to an outhouse? He is always cold. The wind is always blowing too hard (even if
there is not wind). He can’t sleep this
way or that way without it being perfect – a cot and sleeping bag will be a
disaster. He is on a very regimented
schedule and needs special foods. This just isn’t going to work…but then he
says for the 5th time in an hour “I wouldn’t mind shooting a bear”
or “I tried calling my dad…I bet I could sleep in his camper.” Oh, honey...I mean…we could try it, but it’s
not going to work. And the LAST thing I
am going to do is hand him a firearm. I
keep telling him that I trust HIM to be safe, but I don’t trust his involuntary
movements. He argues. 4 to 10 times a day. About shooting a bear and buying a dirt
bike.
We took him on a scenic drive tonight. He mumbled something about Ross Pass or Ross
Peak at least a dozen times or more, even when we couldn’t see it. He tried to telling hunting stories about
Ross Peak, but was getting his stories mixed up. I pulled over when we saw some elk and he
wanted to glass them, but he couldn’t figure out how to look through the
binoculars. We tried several times and
he kept saying – “I can see them better with my eyes.” But he is convinced he can go hunting.
We’ve been watching Randy Newberg’s On your Own Adventures
recently. Sometimes he uses his friend’s
llamas to pack elk out. One night I was
trying to stimulate Rob’s brain and have a conversation with him and keep him
focused on something – plus – he is very excited about HS’s tag. So I told him, I’d like to go back into here
and here. “You nnnnn mmmls” what? “You neeeemuuuuls” “We need mules?” “yeah…mumble
mumble something or other” So, I told
him I know lots of people with horses I could call, including his dad, who also
drew the tag and will probably be hunting with us. We even know someone with a string of pack
goats. Rob says, “you nnneeee RRRndy” huh?
“RNNNNNDY” Randy? Randy who? “yeah. Call
yerrrr frien Randy. Use his lllaaammmmms” Oh dear. He wants me to call Randy Newberg and use his
llamas. I tried to explain Randy is not
my friend, he has a tv show, and started to explain the llamas are from Idaho…I
just gave up. Does it matter if he
thinks Randy is my friend and all I have to do is call him and he’ll show up
with llamas? No harm done – he can
believe what he wants to.
It is Sunday night, I am working on getting ready for the
week ahead of us, and as I tucked him in bed tonight he said, “I wouldn’t mind
looking at a dirt bike this weekend.” “Oh, honey…you can’t ride a dirt bike”
and he starts mumbling about all the excuses and arguments against the same
things every time. “My balance is fine.”
(he can barely get off the couch and walks like he just drank a bottle of
whiskey) “My hand is good” (the one that is always up over his head or rubbing
his eye or touching his forehead every 10 seconds) How will he run a clutch? How
will he use the brakes? How will he shift with his foot? But here we are…I am in the middle of helping
him get in bed so he doesn’t fall out, and pulling the covers up for him
because he can’t do it by himself, and he is trying to convince me he needs a
dirt bike. I pull the covers up and he
throws both hands in the air and starts gasping for breath, shaking his head
back and forth like he is drowning. The
covers are not over his face or even near his nose and mouth. Then he takes a deep gasp of air and starts
telling me angrily, “I kinnnn rrrrda drrrrr bk!” (I can ride a dirt bike) Sigh.
I’m tired of being the big meanie…but…he has no idea.
This…this right here, is reality.
Just one of Rob’s involuntary movements is this foot…all day
long…
Carpet fuzz
He is wearing a hole in the carpet…I vacuum the frayed carpet
fuzzies up every 3 or 4 days.
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