Gettin my hopes up over and over. What to do?
This site has been very helpful to me so far. I posted last week about guardianship and such and got some very helpful answers about elder care lawyers and what I need to do and I actually have already taken some advice and had my 2nd meeting with lawyers already. Thanks so much! Now my new situation is hubby has been "almost" himself in the last 4 days. Not only with me but his family and even been socializing with others at nursing home. He is there for rehab and his medicare expires July 5th, thus the rush to get him Medicaid and placed. He even remembers his release date, counts the days till home (I feel so guilty) and I am confused now totally. We also have a possible hospice placement involved but now I feel maybe he should just come home. He has even taken a few steps, with assistance and walker, in rehab. Of course, I am thinking my way into a huge let down. I feel now, maybe he does not have Lewy body and vascular dementia, maybe Dr made a mistake, he will be home and normal again and my heart knows this will change but my mind is determined to bring him home on July 5th for a "trial" The only different thing in his treatment lately is that he was put on Aricept. I know it is up to me to make this decision but has anyone here had this happen? Is this almost being back to himself behavior common? very confused right now.
It is characteristic of LBD to have fluctuations in cognition and in behaviors. One day they can seem to very advanced in their symptoms and the next the symptoms are mild. Either state can last for days or weeks and then fluctuate again. The overall path is downward. The disease gets worse. But day to day the fluctuations are incredible.
Aricept is generally more effective for LBD than for ALZ, even though it was developed for ALZ. So you could be benefiting from that. For my husband the Aricept remained effective the entire 10 years -- we found that out by taking him off it during hospice. Also the regular activity and good nutrition play a role.
Don't get your hopes up that his dementia is cured. Is isn't. But the symptoms may be controlled enough at this point to consider taking him home.
My best wishes to you both.
If he's happy at the rehab facility, perhaps that's a good sign, that he can and has adjusted well, and that this was a good placlement for him. However, it apparently was only temporary.
I don't recall what his medical issues are, but you write that he's now in a facility for rehab, and that you have a possible hospice placement involved. This seems a bit dysjunctive - was rehab in part to determine whether a specific issue can be addressed through therapy? How is the transition made from improving in rehab to hospice? Has he been given a life threatening/terminal illness diagnosis?
Perhaps the Aricept has help to normalize his life, so perhaps he might be able to adapt at home, but again I don't remember what other issues were involved. It sounds as though there are some mobility issues, so those would have to be addressed.
I think it's normal for you to want to bring him home, to be encouraged by his progress, and to have second thoughts about hospice. You're torn between options, and can't quanitfy the likely results.
I would try to eliminate the vagaries of each issue, so you can focus on what you do know and make your decision based on that.
The other question would be if you bring him home for a "trial", and he needs to go back to a facility, would this be a permanent placement, in AL, memory care, or hospice? That's one area in which the doctors can help in terms of diagnosis.
I do suspect though that if he's really anticipating coming home and goes to another facility, that some of his progress may be reversed and he may become depressed.
And you can always do a home trial to see how things go and make a decision then.
I do understand where you are coming from.