Yeah, it makes me so frustrated. When things are somewhat "normal" for them, it doesn't take long to get used to that normalcy. So when things go back to the disease-related changes the caregivers have to shift gears again and relate to the dementia behaviors. Makes me want to beat my head against the wall sometimes! Well, not really, but it is very frustrating for sure.

I agree with you. the fluctuations are very frustrating. I will have a day or two and feel like our life is fairly normal and next thing I know he will be checking out side the door for someone to deliver something "really valuable" although he doesn't know what it is.

Our grandson graduated HS this weekend and LO did not want to leave our house. He had every excuse in the book. He said "the principal just said the grandson doesn't have enough credits to graduate". He said I wasn't driving the right direction etc. Any thing to keep from leaving home. We stayed for a while at our daughters house, but he wanted to go home. He took a dish of candy from our daughters. Thats another thing. He wants to take things home with us. We ate at a restaurant and after getting in the car, he had a napkin and table knife. I said "oh honey, we can't take that knive" his response was, "but we didn't use it" Go figure. I really have to watch him, especially around other peoples candy dishes. He will fill his pockets. It's embarrising but at least our kids understand. Any one else have this problem of taking things home. He doesn't do it in the stores.
Mary

My dad wants to be in his room at the ALF, under the covers, as much as he can be. He doesn't want to leave his room but they make him go to meals in his wheelchair, now with the other dementia patients, but he is at least getting out of his room.
I've never noticed him taking things, but with the dementias, nothing would surprise me now, I think. It's a constant adjustment on the family members' part, isn't it? Lynn

A few mo. ago I posted about a friend's mom telling me that sometimes she can see, sometimes she can't, so she doesn't read anymore. There were a few other very subtle changes I'd noticed which I told my friend about and suggested she might want to take the mom for a full workup. This week they got the results from 3 hr. of testing at the Memory Center and a visit to a neuro psych. The dx was PSP, and the neuro thinks that the hypertension med the mom is on is making her PSP symptoms worse, so the med is being changed immediately. I'm really glad the mom told me about symptoms she'd been hiding from the family and I passed the info. on so she could get help. My friend said she couldn't help but think about the great med. care her mom is getting here and how she wished I'd brought my dad up here last year when he could have come by car and I could have taken him to the Memory Center. Lynn

Good job, Lynn!

I owe it all to this forum!

Update on friend with PSP - our dear friend, DP, died this week after having been diagnosed with PSP in Sept. 2010. She was walking, talking, eating and seemed frail but ok 6 weeks ago when we saw her last. She declined very rapidly, but thankfully didn't suffer any longer with this awful disease. Her family had just been told she'd need to a SNF last week but they luckily hadn't moved her from the ALF yet. She was 89. Lynn

Survival time with the dementia form of PSP is the shortest of any of the atypical parkinsonism disorders. That can either be bad or good, depending on your perspective.

I'm sorry to hear that she died. There is a national PSP brain bank that has over 700 brains in it. I hope that the answers will start coming from the research being done on such precious tissue.

DP's family is feeling very blessed that she went relatively quickly. After having their other 3 parents die slowly over many, many years, it has been a big relief for them to know she isn't going through the same thing. (2 with Alz. and one died at 99 blind, immobile, unable to perform any ADLs) And, they were also friends with my dad and knew the horrible indignities and disabilities he had been suffering, and what she would be likely to face with PSP. She was such a vibrant woman - this time last year she was still living independently, square dancing several times a week, driving, etc. Lynn

Lynn,
This is indeed sad news but a blessing at the same time, to go through years of decline is such a hardship for all involved especially the person with it.

My dad's vision fluctuated, and my friend DPs did too. She had PSP, and that was one of the many guesses as to one of the dxs for my dad. Several other people on this forum have talked about fluctuating vision and hearing. Sorry you are going through this. Lynn

Debra -
You might consider elevating the meal plate. People sell "plate elevators"! Or you can try putting the plate on top of several phone books.
Robin

I am frustrated. My 85yro Mother's eyesight is getting worse.
I have seen previous post as to some of U visiting the eye Dr. numerous.
I just hate to call again. She has seen opthamolgist,her optomerterist, & even a vitreo specialist. Of course different glasses or lense changes. No results except her vision is fine just probably the meds. her eye Dr. is ind to see her to apease her but he still has no answer except her disease.
She of course forgets what the Dr. tell her. She is depressed because she says it is hard to play Bingo or color with her colored pencils. Today took her some flowers she says she couldn't see the colors very well or the type of flowers.
Have any of U ever had the carbo/dopa or requip reduced? These meds
may cause visual proplem or vision changes. Think maybe call Neuro. But I know he just kind of blows it off now since he has explained some side effects before. Or I have read articleson this disease. Any suggestions???
Thanks, Gayle