I received this email today:
“I’m sorry to mail you individually, but I created a topic and couldn’t get a reply from anyone, so I deleted it.
My father was diagnosed in 2002. The disease has progressed fast and led him almost to his final stage now. His situation is:
– Difficulty in swallowing (mom and I are still ignoring the feeding tube option, and feed him well in puree form..)
– Not even his one word is now understandable. (best way we have found is that he tries to write letter-by-letter on his palm with his finger. After first few letters, we guess what he tries to tell.. Funny, but works..)
– Breathing seems to be very difficult nowadays, mostly disordered.. He makes a sound like he’s whimpering. But when I ask him if he has a pain somewhere, he says no..
At this stage our biggest problem is that he wants to move very often. He can’t sit down even for a minute, and tries to get up (can’t) and go somewhere. Almost obsessed with some issues (like he wants to go see a friend etc..) The fact that he wants to get up very often is a very high risk for him, as he can’t stand or walk without help, and falls. We are walking with him most of the time, but sometimes it is extremely exhausting to follow him. I would be grateful if you have any ideas or solutions that could help.”
Here’s my reply:
I remember seeing your first post and I’m sorry neither I nor anyone else responded.
I think you only have one choice — be with him 7×24 and assist him when he does want to walk.
You can treat the obsessive impulses with an antidepressant or other medication. This may lead to drowsiness. You might give that route a try, in consultation of course with the MD, and see if that improves your father’s restlessness (akithisia) and obsessive thoughts.
Is there any way you could tire your father out through exercise? In the US, they have pedalers that can be placed on the floor. Sounds like he could also get on an exercise bike.
Or would taking your father outside in a wheelchair for some fresh air resolve his need to move around?
I wouldn’t consider your father to be in the final stages.
Robin