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I lurk here a bit, but mostly am busy dealing with my dad who has Alzheimer's. We are flying him down here to Cinci this weekend to live in a special facility and I will be his primary care-giver. My sister in Mn. is suffering burn-out and needs a break.
Anyway, in trying to find my way through what to do with dad, I came upon an excellent site for Alzheimer's which was very helpful to me. I wanted to pass this along: www.Alzheimer's Association Online Community. They have a message board and social workers who will answer questions and give advice. Luci, I thought of you - have you gone to this site?
As for me, I'm doing well. Got moles tearing up my garden, driving me crazy!! This morning Pounce, the neighbor's cat, earned some points with me for catching one. Bruce heard the ruckus from the dogs and went out there and threw it over the fence. Yay! Go, Pounce!
Glad you're at least lerking. Nice to know you're there.
I will definitely be watching that site as even though Mom's primary problem is Parkinsonism, she has a number of features of dementia and there is some overlap for sure.
Sure hope the facility works out well for your father as well as yourself.
I knew your mom had dementia and so thought it was Alzheimer's, but I know that Parkinson's can mean dementia also. My father -in-law had dementia with Parkinson's.
When I first got internet capability here, back in Feb. of '99, one of the first things I did was search for information about PD. One I used was Harvard/Mass General Hosptal's Neuro Bulletin Board site. Ended up answering a RESPONSE rather than the original post, and made a very good friend that way, so we just continued to support each other and communicate alot as it turned out we had many more things in common. Her dad had many more complications than my mom, and although I never saw him, from what she said, his condition sounded much more like my best friend's husband. Too bad she didn't have a computer as they'd have been such good support for each other. Both are nurses, and good ones too. Too bad we all didn't live in the same place -- could've gone in shifts.
The friend I met at Harvard (haha!) also had problems with her Mom who had lots of dementia which, I believe WAS Alzheimer's.
Between the two of them, I really don't know how she managed. They're both gone now, as is my friend's husband. I had my uncle here at the same time as Mom up until summer of 2001. He was 6 yrs older, and a little worse off than my mom, but their forms of PD seemed more alike than different.
At least they could eat normally. My uncle really couldn't ambulate any for a long time, and was completely incontinent whereas my mom just has that problem at night for the most part -- still has to wear a pad -- Serenity pads are GREAT, aren't they?!!
I'm doing much better keeping Mom away from gluten only since we discovered she's mildly gs. We'd pretty much decided we weren't going to make her stay off of it if she really wanted, say, a real hotdog or something. Now, she's not insisting on things like that, so I'm afraid one day she'll want one, and be much more sensitive to it. That could put an end to Milk of Mag, that's for sure! Ha!
Thanks for asking, Alice. The Harvard/Mass General/Neuro Board is all in one unit with different sections nowadays, so I can visit the PD room the same time I check into their celiac/gs room, but I just don't have the time, really.
Mom is really unusual in that she's not had to increase her meds as much as most people, including my uncle who'd pretty well maxed out toward the end.
My dad will have been gone for 6 yrs on the 5th, so the holiday weekend always brings that to mind, but we're happy for HIM, we just miss him. You know what I mean, I'm sure.
Oh, and did more recently check out the site that M.J. Fox started. Really should check that out again soon, just to see what's up. Hmm, wonder how he's doing with his own disease right now?
There is a VERY active local support group that I've not been able to attend as much as I'd like to have due to not having anyone to stay with Mom. They do have a patient group and a caregiver group right after a speaker and coverdish type of lunch each month, but since Mom's also deaf, and doesn't tolerate crowds and new places well anyway, and also gets sooo fatigued, it just wouldn't work out to well for us.
Also, we generally don't go anywhere until afternoon -- just too much involved in getting her out of the house due to having to bathe and dress both of us, and work in two meals, etc.
We do have mom on Namenda now. My sister thinks it's helping her memory, but I'm continuously with her, so it's not as easy for me to tell. Perhaps I should give her little quizzes to monitor that on some kind of regular basis. Any suggestions as to what to ask?
I don't know how you do it with your mom - are you a registered nurse or LPN? I admire you for all the efforts and sacrifices you've made on your mom's behalf. I haven't made many for my dad because he's been living in Mn. But, having visited him many times, I can imagine what it would be like to care for him full-time. I don't know if I could do it.
I'm sure that will change tomorrow! He'll be in a very good Alzheimer's facility so that will be a big help. He needs to be in a locked place, and can't do stairs anymore, so having him at my house is not possible. And with my teaching studio here, it wouldn't work.
That Harvard place sounds very good and what a bonus to find such a good friend, as well! Having someone who's been in the same situation as you must be a comfort. One just can't know what it's like to care for a demented parent until you've done it.
I can tell that the holiday will be a sad reminder for you - we continue to miss them forever, it's true. My thoughts are with you.
I'll check out MJ Fox's site when I get a chance -there's a sad case - so young.
I always ask my dad what he had for supper when I call him in the evening - usually he can't remember! Or maybe he can't summon up the correct words to tell me - not sure. He doesn't have much trouble with words yet. Events are the main problem. That will help, I hope,
in making the adjustment down here. Hopefully he won't remember he's moved and will think he's still in Mn. We told him he's coming for a visit and to see how he likes it. Nothing permanent - that would make him very anxious.
Alzheimer's is sooo different from PD that it's usually best to place them in a good facility like you are doing if you can manage to do it.
What you said about your dad reminded me of what Mrs. Reagan said about it being sad that she and Pres. Reagan couldn't share all those years of memories during the last years of his life.
What's so sad about my mom is that she was such a brilliant, witty woman until the PD started coming on. In spite of her deficits, she still can crack some pretty clever jokes -- you know, the intellectual type of humor that's sort of subtle. She's very soft spoken and the PD makes that even worse, so she's difficult to hear if your ear isn't right next to her mouth, particularly when she's fatigued. Anyway, whenever she takes a notion to speak at the beauty shop, all of a sudden, all the attendents will get really quite, trying to hear what funny thing's going to come out of her mouth. This is because one day she had them laughing to the point of tears with something she surprised em with, so now, when she speaks, EVERYBODY listens! Ha!
Better close for now.
Have a great tomorrow and holiday weekend.
Yours, Luce
Go, Pounce! 
He'll be in a very good Alzheimer's facility so that will be a big help. He needs to be in a locked place, and can't do stairs anymore, so having him at my house is not possible. And with my teaching studio here, it wouldn't work.