Changes
January 29
We have some big changes right now! I am surprised how
ridiculously excited I am for some of our changes…
1) Meals on Wheels! Heidi
is off on vacation to Arizona with her grandparents. This means Rob is home alone in the daytime
now. So…..(drum roll)…I signed him up
for Meals on Wheels! I was sure he would
hate it. SURPRISE SURPRISE SURPRISE! (in
your best Gomer Pyle impersonation)… He LOVES it. I have been making him personal meals stacked
in the fridge and labeled with sticky notes.
All he had to do is microwave them for 1 minute. He was so angry and frustrated with
this. It’s too hard for him to do. It gives him a headache. He doesn’t like the food. This one or that one makes him choke. He didn’t like having to “fend for himself
all the time” (I seriously SERVE him all of his meals and snacks and had his lunches
waiting in the fridge for him).
So…now, 3 days a week, a little old lady stops by and
delivers him a hot meal. And he loves
it!
What?????
2. Another big change is that I have arranged for some of Rob's friends to come visit him on some of the evenings of Cody’s basketball games. THANK YOU
Gentlemen!!!! It is such a relief to be
at a game and not have 87 text messages yelling at me. (slight exaggeration,
but…he usually texts me several angry messages during the games). There have been games where he calls me
upset that I expect him to scoop his own food out of the crockpot that I left
for him. He expects me to be home NOW.
He yells and fusses and carries on about how hard it is to fend for himself –
even though I have food in the crockpot.
Some days, I have made a crockpot full of something he specifically requested for dinner, only
to have him yell in the phone that he “hates (that food item)”. But, if I have someone available to stop in
and chat, even for just an hour, it changes his entire mood!
He is so busy talking about the old days of
riding dirt bikes, snowmobiles, motocross or hunting, that he isn’t staring at
the clock every 3 minutes texting me to come home. I know it is hard for his friends. It is hard to see him in the condition he is
in. It is hard to have a conversation with him.
He is getting harder and harder to understand when he talks. Besides mumbling and not opening his mouth,
his cognition is bad enough that his stories or conversations are all over the
place and never get to where they were going when he started. He is getting harder and harder to
understand! So I know it isn’t easy to
sit and chat with him in the evenings, but I am so grateful for those who have
tried it. It makes a big difference. I know I need to figure out when to start
having a care-giver or even just companion-care come in a couple of times a
week to check on him, listen to all of his stories, and make sure he gets a
good dinner – especially when I am at work or committee meetings or out running
to school events. It would be helpful
for Rob…I just haven’t had the time to check into everything I need to know.
3. ANTIDEPRESSANTS! I am
also looking forward to his next psych appointment in a couple weeks, so I can
get his antidepressants upped to a higher dosage – that should change things
drastically for the better. At least I
hope so. I am exhausted with the
negativity. He complains about EVERYTHING and EVERYONE and is frustrated and angry and bitter and we are all so exhausted. So, we're bumping those suckers up at the next appointment and praying it works!
4. Basketball: At the
very end of Cody’s basketball season, Rob decided he could try to come to a basketball
game! This is a MAJOR change. Everyone in Churchill was soooooooooooooo
excited to see him there! We were able
to get him up onto the bottom row of bleachers in the old gym (no handrails),
and the seats were hard to watch a game from, but everyone congregated around
us because they were happy to see him. After
the game, many people came to shake his hand and check in with him. I SO appreciate all of you!!! He also made it to a game in Clyde Park where
he was able to see some of his classmates and family. I love going to games in Shields. He called a couple of people by the wrong
name, but they have all been through this Huntington’s journey with him
before. They were there in high
school while his mom was sick and they are there now as his sister and her
family are dealing with it. So…they all
KNOW…and love him just the same…and I am very grateful. I may even cheer (almost) as much for the SV
kids as I do for ours. I love you guys!
I really do. Thanks for loving on Rob
and giving him a “safe” place to come home to.
Even if he gets your names wrong when talking to you, he still knows who
you are and has many fond memories. After
hearing him call one of you the wrong name, he went on to tell me several
football stories, so I know he knows WHO you are, he just can’t get names
right. He really cherished his years as a Clyde Park
Blackbird and all of you who made it so special.
No comments:
Post a Comment