Right now my husband is at his peak, doing very good, and on the max amount of Exelon (patch 13.3) and Namenda ( just switched to new capsule)
We had our Pshyc visit last week and the Dr told me he is late stage six beginning final stage 7.
My question is what should I expect, do the meds just stop working and he reverts to what he would really be like if he had never taken them? Getting a bit scared now since hearing this, I know these meds work differently on every person, but has someone seen what is actually going to happen ? Is it a slow or fast change.
Maybe he doesn't have Alzheimer's, but it could be that he is having problems from another medication or a B12 deficiency or an infection - or another type of dementia. It seems to me that he was just "dropped." Maybe I'm reading this wrong, but from my perspective, I'd get a second opinion.
Take care,
Carol
Now. . . I can liken it to someone who was on med's and now they aren't working. . . It almost the same, I think. I say that because I see a definite change in my husband, and it is for the worse. He acts completely different. Sleeps all the time, asks what day it is, and the time . . .all the time. He has lost his desire to eat. . .Doesn't acknowledge our pets, that he adored. He doesn't even think of,or do any of his daily activities, nor does he watch TV, which he always did. . . Get the picture? So in my way of thinking, taking him off of the medication is almost the same as if it had quit working! So, where do we go from here? I am scared for him, and me.
They sent him home with a filter in his body to catch blood clots, he still has one in his lung. . .They gave him a larger dose of Warfarin, then let him go home.
I asked about the clot in the lung. They said they "hope" it dissolves. No mention of a return visit, etc. . .???
I was told if you go off the meds or aren't taking the meds your decline dips a lot rather than slowly. The meds don't stop the decline it just slows it down.
Also, everyone declines differently. A friend of my Dad stopped talking, walking, knowing how to eat when her progression went down. She was on Namenda but wasn't taking the pills. The nurse would give her she would put in her mouth but then spit out when the nurse left.
Hope this helps.
My Mom died from pulmonary fibrosis so I didn't have to go through the last stages.
Hope this helps.
Here is the contact information for the insulin nasal spray study.
If outside of Chicago area, there are multiple sites across the country conducting the trial
www.adcs.org has the listing of the centers along with information on the trial
I think you will find this site informative
Please email if you have any other questions.
Thanks for emailing me.
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