Yeah, just me again, wanting signs and symptoms to serve as a predictor of timeline and what will happen next. I know it doesn't work that way, don't worry.
But he is getting so tired this Spring. Like a living ragdoll who just sort of drifts aimlessly around the house now and then, as a break from sitting—sleepy and expressionless—in a chair. His ability to go anywhere without hands-on guidance is about shot.
But because it's posterior cortical atrophy, not textbook AD, he still knows who everyone is and such.
Help! I need a PCA cheat sheet! Without the excessive memory loss will we just sit in a chair, or be a zombie I can lead about for years to come?
As you were friends, I'm just going crazy this Spring, a little. I'm sure we'll semi sorta level out to something.
Emily, it is hard not knowing what will happen next. My DH has what I think is FTD although not diagonsed. So, he also has most all of his memory. We do lose some very short term memory.
DH get tired a lot also.
As Joan tells us, "if you have seen one patient, you have seen one patient." They are all different.
Hang in there. I try to not think about anything past present. I'm also have a very "perky" personality and I am an optimest (who can't spell very good). that helps me a lot also.
I've gotta tell you, emily, I see lots more lethargy in my husband at home than I do when we are out. I have never seen him doze off in public (well, maybe in a movie--but well people do that too). And maybe riding in the car--but I used to do that all the time when he was driving! However, when we are out alone, or out with friends, or at daycare, he is paying attention to what's going on. So I chalk up the snoozing at home to boredom plus the sedating effect of the drugs he's on to keep him manageable.
He doesn't doze out of the house, really. I guess. It's just that out of the house means we're either eating lunch or at the grocery store or something. I've sort of run out of ideas for anywhere else to be, because he can't navigate crowds, and he doesn't notice things out and about in a meaningful way so as to be able to comment on them, or make conversation.
Frankly, I don't know what to do with him, other that leave him to sit in his chair, or break sticks in the front yard, while I try to work on something at home.
We might visit the senior center since the daycare lady thought that might be more appropriate for him. I doubt if he'll care for it.
emily, your situation sounds a lot like mine. I’m at a loss of where to go too. He keeps asking what we are doing, but when we go someplace he says he wants to go home. My DH wouldn’t go to day care & he wouldn’t be able to do the things at the senior center, so what’s the point.
Early on, my husband's neuro said to get involved in activities with reading and kids--some kind of a study was done and it showed benefits for dementia patients. So "we" volunteered to tutor some elementary school kids. It was fun--in reality, Steve was another kid along with them and I was the schoolmarm. This was in the post-dx and pre-daycare period.
We also used to go the gym together, he could still do the machines and I did an exercise class. If he would have needed help, I would have hired a personal trainer. (Working out was a part of his old life.)
We babysat our granddaughter one day a week.
A friend took him to a current events discussion (college class) once a week.
Fired our mulch guy and Steve did the mulching. I figured, how bad could it be? He did do some "creative" things with it.
I never even tried the senior center because he was 60--I knew from taking my Dad a few times that everyone else was much older and he'd object.
No, same stuff since '07! Simvastatin and Maxzide (cholesterol and bp meds,) plus the same ol' Aricept and Namenda. I don't really see a sudden and dramatic change so much as a downshift which has accelerated a bit.
I think I'm just in a slump and will bounce back and get some fresh ideas soon.
Sid is almost always tired - sleeps late, sleeps in his chair in the den after he reads the paper, falls asleep during TV shows. He doesn't doze out of the house, but the energy required to pay attention and follow what is going on, whether a movie, play, conversation, or the dominoes game with his AD buddies, takes so much out of him that he is asleep as soon as he hits his chair in the den.
My dh is so tired all the time. He sleeps at least 12 hours at night....takes a 2 hour nap late in the morning and sometimes takes a 4 hour nap in after noon. Just this week he has started falling asleep on the couch before bed time.
He doesn't seem to understand the most simple directions.... like "taking the top off a bottle"
I do find this stage, whatever it is, much easier for me then the ranting and raving stage.
Lynn too got so tired, and it happened early on in the disease. As he progressed he got more and more sleepy. I often wondered if in the early stages, when he knew what was happening to him, if it was a way for him to escape his thoughts.....
In the later stages he didn't sleep so much as "drift". If I didn't have something to stimulate him he would just doze off. Not really asleep as he was aware of what was going on around him. Then later still, he got to the point where he would stay in bed all day and night if I let him. He would have been content to sleep 22 hours out of the day, only waking to eat. *sigh. Now of course he does still sleep a lot, but he is more alert. He is awake for my entire visit whether it is 2 hours or 5.