He definitely had a setback.
He was very tired, didn’t really light up when seeing us, was more
confused and very hard to get moving.
He’d get “stuck” when he was supposed to do something like take his
turn. He’d say ok, but then continue to
just sit. His cough was horrible and his
appetite seemed weak. The snacks he
usually goes through in less than a week were still there from our previous
visits. It was sad and scary that maybe
the visits we looked forward to, were now going to change. When it was time to leave, he was very hard
to get back. He was just “stuck”.
After Christmas we visited and brought him a tablet. We put a few games on it, hoping it would
give him something else to do. We also
set up an email account, but figured that might be something more advanced he
might not be able to handle. It turns
out it just wasn’t something he was able to connect with. I really think if we had given it to him before
he got the flu, he may have been able to handle it. But not after the recent setback. These last couple visits were more sad and
depressing. But it was encouraging that
he did seem a little improved each time.
I called to speak to the social worker to see if they’d
noticed the decline and if they could tell us anything more. They had basically seen what we had, but kept
saying it was normal. She also said that
sometimes he gets confused and will come out not completely dressed, and that
morning at breakfast he showed up without his pants on. She said it was no big deal, that it’s very
normal with the disease. They just
re-directed him back to his room and helped him get dressed. I get that it is “normal”, but it’s not
normal for him. To me it’s another
regression. And he’s 65, not 85. So it’s really hard to hear.
Now it’s been about 2 months since he was sick. And I think it’s safe to say he has turned
the corner and bounced back. Yes he is
still a little more confused, and I think in general the disease is still
slowly progressing. But I went for a
solo visit again this week and he was great.
So happy and upbeat, he kept thanking me for coming and he didn’t act
tired or “scary”. It was such a huge
relief. Because seeing him the way he
was before was just hard. I know he’s
going to get worse, but we hope we can have more time with him before that
happens.
There have been some changes in the past few weeks. The activities coordinator from his unit
retired, so they hired someone new. I’ve
heard that she is really good and has been getting the guys involved in different
things. When I got there this week, all
the guys were in the dining hall finishing up the personal pizzas she had
helped them make. It looked so fun and
seemed like a really good idea. I’m
interested to hear more about what she does with them. Especially as the weather gets nicer and they
can go outside again.
My dad also had the opportunity to move into a single
room. I wasn’t sure if he would want to
because he’s so set on his routine. But
he ended up making the switch, and we are all so happy with it. Now we can bring some more personal things
for him to hang up. He has a nice view
of the courtyard and was already commenting on certain people he sees out there
regularly. So it seems he already has a
new routine and is doing well with the move.
So a couple things to note from my visit this week…after I
pulled him out of the lunch room, we got his pool stick and started to head
out. He got sidetracked by the big
screen tv because Dr. Oz was on and he really likes that show now. I remember him saying that in the Fall, so I
guess it’s part of his daily routine to watch Dr. Oz now. I like to hear these little tidbits about his
day. It helps to know he’s doing
something and has things to look forward to.
It was hard to get him on task when it was time to
leave. I can’t even explain why it’s so
hard. It just is. It takes a lot of re-directing and being
firm. Then, once you think he gets it
and is ready to comply, he’ll ask again “so do you want to shoot one more
game?” And then you have to explain again how he’s going to be late for
lunch. And he’ll say ok, and then sit
down and crack open a can of pop and light up a cigarette…I finally got him to
agree to come by talking him into getting a coffee on the walk back.
Once we finally got going he stopped by the tv again to
watch a St. Jude commercial. They were
showing kids with cancer and it was hard for me to watch. I didn’t expect it to phase him. After all, the emotional feeling is supposed
to be long gone with FTD. But he stopped
to watch and commented how hard it is to see those kids like that. I was surprised, and almost wanted to change
the subject before he ruined the moment and said something inappropriate to
follow it up. But it seemed genuine so
I’ll take it.
Then that was ruined on the walk back as we passed a large
woman riding a floor cleaner. She
stopped to let us pass, smiled and said hi.
As we passed dad was like “Wow.
That woman is almost as big as that floor machine!” I pray she did not
hear. From an outsider it would be
almost comical, because he’s not looking too slim himself these days. Not to mention, he was wearing a sweatshirt
that didn’t quite cover his belly. But
that’s the disease. We stopped for his
coffee and as we continued to walk, I stopped to check the time and bumped into
him, spilling his coffee over his hand and arm.
I felt so bad. But he didn’t even
flinch and didn’t mind at all. The
coffee was fresh from the pot 2 minutes ago.
I guess it’s really true that he just does not feel temperature the same
anymore.
When we finally got back to his room I told him I wanted to
clean it up a bit while he went to lunch.
It’s always hard to get him to just leave as I’m still there. I started stacking up magazines that he’d
been hoarding so I could take them home and get rid of them. The one I pulled out on top had Elle MacPherson
on the cover. He saw it and was like
“WOAH! Who is that????” all
googly-eyed like a 13 year old boy. So
that’s always fun to hear from your dad.
Again, distraction, it’s all you can do.
Then I discovered a note pad on his desk with some things
written on it. I saw he had some tv
shows with times and channels written on it.
Dr. Oz, The Big Bang Theory…and then my heart sunk. At the bottom of the pad was the phone number
of that “woman”. The one who took
advantage of him and got ahold of all his money…the one who had tried calling
the facility a couple times to speak to him.
I have no idea where this number came from. I tried to sneak through his phone real quick
to check the call log, but didn’t have a lot of time at this point. I didn’t want to keep him from lunch. I didn’t want to come out and ask him and
remind him of her. So I tore the number
off and took it with me. I’m completely
baffled because he doesn’t know his cell number, so she couldn’t have called
him on it. If she called at the front
desk, we’re supposed to be notified. And
I don’t see him remembering her number long enough to go back to his room and
write it down. So we’ve got some investigating
to do…
