I assume that what we are experiencing in our progression is probably more typical of the visual variant of AD, as opposed to classic textbook AD. I'd be interested in input from anyone who's seen it shaped like this:
I knew, instinctively or by subtle clues, that this winter was going to be a downward trend for us, and it is, but it's still not really about memory.
Jeff knows where we live, who everyone is (usually...he's gotten confused about a brother and sister a time or two, but always knows me, my Mom, kids...and his knowledge of his history remains pretty good.)
Instead, his ability to visually navigate the world is diminishing (increasingly impaired ability to manage food, find the car door, deal with doors, position a chair at the table, pour coffee,) and the other significant trend is loss of stamina. He uses the elliptical trainer daily, but I check the readout afterward and notice that his energy level as measured by distance in a certain amount of time is WAY down. Additionally, he spends increasingly more time sitting in a chair with his head back, even if he's just gotten out of bed. Really, all day unless he's exercising or we're going somewhere.
I am of course (like all of us) wishing I could know what happens next, when it's not the memory that is the most affected. (this is not to say that he is not substantially cognitively impaired, because he is, but the emphasis of his disabilities are areas other than straight memory.)
Does this look like a pattern any of you who've gotten further down the road have seen? What happens next? (Crystal ball time.)
I don't know if your DH's age is a factor, as it was with mine,who died at age 91 3 weeks ago. But what I did notice was that as he reached late 6 and early 7 last July), physical symptoms became more marked,and then it was an accelerated decline until his death, although the doctor did say he died of complications from old age, not Alzheimer's.
Can't really help but I do know my husband gets tired very quickly. It does not take much to get him breathing hard - except when we go walking he is fine. But other physical things - very little has him breathing hard.
My DH does the same thing. Right now he is experiencing more physical problems than mental but like you said the mental is still dimenished but right now the physical is more prominent. My DH has Parkinson's too, which at times happens with people who have dementia. So even though both of them are brain issues the parkinson's is aggrivating(in more ways than one) the other issues. I threw away my crystal ball a long time ago because even though I kind of know what is going to happen next I don't want to know what is going to happen next(if you know what I mean) I am already on medication for panic and anxiety so I don't need to borrow anymore anxiety than I already have. I am alright as long as I just take one day at a time and sometimes one hour at a time. I hope this helps. I know that I didn't answer your questions but it is just nice to know that there is someone else to talk to that knows whats up. That's why I like coming here to read about others and talk to them and just sometimes bounce ideas off each other.
I believe my dh who will be 64 next month and is in late stage 5 and is very, very tired all the time except if we go some place. He sleeps 10 to 12 hours at night, back taking a nap in late morning for 2 to 3 hours, takes another nap in afternoon for 2 to 3 hours. His speech has really gone down hill the last couple of weeks. Sometimes I can't even figure out what he is trying to say. Yesterday he knew he is going to have a birthday soon but didn't know how old he is now or how old he will be. He knew his birth date and asked me to figure out how old he was going to be.
Age isn't the issue, since Jeff is just 63, and otherwise in good health. I am seeing some stumbling in his ability to verbalize a thought. Yes, I understand deb's point about not borrowing trouble, or tomorrow's cause for anxiety before you must. I'm just bad at facing unknowns. Even though I've been dealing with this since 2004 roughly!
JudithKB - with the exception of the upcoming birthday (his in in Sept, and he never remembers anybody's anymore) you could have been talking bout my DH. Same exact thing! Ugh!
Emily--a few comments on your post and the loss of stamina: It may not necessarily be the result of disease progression, what I have seen here is a lack of INTEREST in exercising vs. loss of the physical ability to do it. Perhaps it goes along with the general apathy that can set in; or I have wondered if my husband lacks the self-motivation to do things now that he always did not necessarily out of enjoyment, but because he knew they were good for his health (I.e., tolerating doctor's appointments, daily exercise, etc.). Re the sitting in the chair (dozing?), again, I have chalked it up more to the sedating side effects of meds and boredom than anything else, since he is fine if we are out and about. I agree that the winter is more challenging (probably for most people), with fewer daylight hours.
Has his doctor told you anything about how he thinks symptoms will play out? I am wondering if looking at the Reisberg scale--although that is set up for "typical" AD--would help you in analyzing what may happen next? Maybe some symptoms will occur in reverse order? Just a thought.
Emily, my wife (will be 65 in May) ... whose greatest areas of impairment is also short term memory (and agnosia) although the cognitive decline is also evident ... is also exhausted much of the time. This is true whether she has been exercising or not. She also now sleeps 10-12 hours a night. From what I know about AD, though, you can probably put away your crystal ball because no 2 people with AD seem to decline the same way.
My husband is in early stages, still able to take care of himself, but has lost a lot of stamina. He has Parksinson's too, so I think his shallow rapid breathing may be a result of stiffening of the breathing muscles. But it seems also to involve motivation and or a general feeling of tiredness--we went to a museum he really wanted to see and after a few hours he said he was too tired to do any more. I think that was mental tiredness, not just physical.
My DH tells his doctor that he walks every day. He walks maybe once a week. He only thinks he walks every day. He often acts tired when I get home from work. All he does is sit in his chair or plays games on the computer. I think the mental tiredness is real and it does get to them. I know when we do something new he often gets very tired. Also mental tiredness. DH is 59.
Emily, I am always wondering what will be next and when. This winter showed a decline which I expected due to staying in the house all day. Sleeping 10 hours a night but could be more if I didn't wake him because I was getting ready for work. Every night is a sound sleep for him. I wake around 2-3am with AD on my mind. It has consumed my thoughts. The memory goes first in Alzheimers, so I've read. But not with DH. His memory is better than mine sometimes. He struggles alot trying to get his words out. I know he knows what he's talking about but he just can't say it right. DH is in stage 5 from my own understanding. I too wonder for how long. What new change will I see next?
Emily----my husband is in earlier stages of something (ftd??) so not a good comparison with your Jeff. But fatigue and apathy are constant companions of whatever DH has. Mind you, fatigue is a major symptom of another medical problem that he has. Sometimes he really does want to accomplish and do things but fatigue hits him way sooner than it would in someone else his age. But then there are other times when he has no motivation to do much of anything other than sit and read and drink coffee. Most of the time he enjoys getting out and being with people so long as that is the only activity for the day. The thought of facing more than one thing a day (at home or out) tends to overwhelm him. Basically his day is get up / have breakfast / sit and drink coffee / do something such as collect the recycling or putter in the garden / get anxious about having lunch (ahead of lunchtime) / eat lunch / wash the dishes / sit / go for a nap / get up and make a cup of tea / sit and drink tea / read / have supper / do dishes / sit and read / go to bed. He is quite content with that type of schedule! I notice on Sundays when we attend church and he chats with people etc, that he is more tired and takes a much longer nap. He really likes it when family visits but has a harder time if everyone comes over . . . I'm finding he's managing better when it's just one or two and for shorter times.
So yes, stamina and fatigue changes are definitely observable. And changing. Some days are better than others . . . sometimes I can figure out why and other days, I just try to go with the flow. It's a bit like doing things to help me. He usually insists on doing lunch and supper dishes. Some days he is fairly efficient with that task and other days it takes a long time for him to wash the dishes. Sometimes he will set the supper table for us . . . and another day it never enters his head to do so. The other day I asked if he could set the table and he agreed, came out to kitchen and I realized he was tossing each piece of cutlery separately across the table any which way . . . and he set each place rather sloppily. If it had been one of children (years ago), I would have been given them some "instruction"!!! Why can he do it willingly (and well) one day yet the next time, it is hit and miss? A small example I know but very reflective of whatever is going on.
I know I posted sometime ago about traveling----we took one trip a couple of years ago and I was very surprised at the difference in his stamina compared to previous holidays. Last year we vacationed closer to home and stayed in one place. Much better. Now he is talking about going on a long road trip which I don't think is going to happen. He just can't handle that much travel and change each day.
Rachelle, I hear you about the trips. I take my DH to a group of aviators for a monthly luncheon which is only 90minutes down the road..and by the time we get home,he is done in. Our kids in Europe, think it will be nothing to have him come over for a family celebration in June..they don't get it! It is so easy for others to tell us to just get a wheel chair..they forget all about the confusion caused by the time changes, not to mention all the ardors of travel itself. I wonder what it is going to take to get people to understand what we deal with! Our LOs do tire more easily. DH will snooze in the afternoon and go to bed by 8 and get up 12 hours later.
And as someone else said I too wake up a couple times a night with the ALZ worries creeping into my dreams which always seem to be about problem solving anymore. I wake just beat before the day starts some of the times.