Anyone Experiencing Wide Swings in Abilities?

Cobalt

One major surprise to me is that for the last year my son will have a stretch where he is showing many classic Alzheimer's behaviors like sundowning, and being unable to tell ahead of time if he needs to toilet, or trying to sleep 15 hours AND take many naps.  And then we have 3 months where he knows exactly when it is time to go to the toilet, stays up till 10 or 11 pm, converses normally, feeds himself most of the time, and enjoys more activities.  It does seem to be tied to the amount of pain he has going on.  The bad stretches have always been associated with excessive pain, recently a two month ordeal resulted in gall bladder surgery.

I just figured with dementia, it progresses slowly but steadily.  Not so here, it is like fits and starts.  We always so hope he can hang on when we see "the old Drew" but then he goes in stretches he's like a fragile, crochety 87-year old man.  My son has Early Onset at age 41.

Battlebuddy

   My husband swings back and forth in his progression. Sometimes he is here and very much himself. Sometimes he is the old man you describe, who seems about to take his last steps. Sometimes he sits with his eyes closed. Sometimes he is picking up  things. A few months back he was sleeping a lot , not eating and I thought it was time for hospice. Now he is up and about, with no napping and rummaging . Because of this he lost 10 lbs, gained it back, and has now lost it again. 

   In an Alzheimers seminar I remember a drawing of a line drawn at angle moving from up to down. We think it will be like that. But the teacher then drew a jagged zig zag line over the straight decline line . That’s the road we are actually on. We end up at the end but there is a lot of movement back and forth.  

Salsam

I am so sorry to hear about the early onset...but yes, up and down is my experience.  So much so, that at the end of his life, I almost felt like my dad didn't have Dimentia.  

He had an official diagnosis of Alzheimer's, but he always knew who I was and asked for my mom a few days before he died...several times.  He recognized people close to him.