I always look for analogies. I think that the reason this site is so valuable to us is that all of us are dealing with AZ on a DAILY basis. It's not my sister in Milwaukee or my mother's uncle Joe who has AZ; it's our spouse! Just as when we dealt with our kids DAILY, their tantrums could really get to us; grandma coming in once a week or once a month couldn't see the problem and would offer unhelpful advice. So here we are, having the equivalent of the kaffee klatches we used to have in suburbia in the '60s and '70s, comparing notes about the misbehaving regressive children in our homes. The sad but obvious difference is that we can't look forward to sending them away some day, full of self-confidence, or applauding them at recitals.
I miss the coffee and the cookies but thank heavens for the companionship here!!
Briegull, I'm drinking my coffee while I read your comments, and had an apple-filled doughnut with it. It was very good, by the way! :)
As you stated, we can't look forward to sending them away some day, full of self-confidence, or applauding them at recitals, but when they go away to that place of peace, we will know that we did our best to make their lives the best they could be here on Earth. And hopefully have survived with our sanity in place and some funds left to live on.
I always wonder how much they actually understand behind the facade of AD. There are so many times my husband will come out with a statement that just fits.
One of the things that I have been trying to do for him ever since we found out he had the disease and all along was to show and tell him that his life had value. When I handle a situation that I can because of watching him do it or doing it together, I thank him for helping me learn how to handle it. A couple of days ago I received something I had bought that had to be put together. I was able to handle that and was very proud of myself. I told him about it last night and thanked him for teaching me a bit on how to use power tools etc. He said "of course". I will never be sure of how much he understands but that's okay.
My husband's pride is important to both of us, so whatever he wants to do (within reason) such as make the bed, take out the trash, etc. I let him do, even though it is taking him almost 30 minutes to make the bed now. He comes into the den with a huge smile on his face that he is so proud he can still do it! I praise him and give him a hug and a kiss.
He'll see something on TV once a week or so (in between putting in DVDs) that will trigger a memory and he'll try to ask say something about it or a question (which I have to interpret and then answer). He is very proud of himself for taking up the old carpet that was put down on top of the hardwood floors many, many years ago. He's on the last room now. He sits on the floor and with his handy dandy pocket knife cuts a section (2 feet or less) and rolls it up and puts it and the pad underneath in a garbage bag. It makes him feel good that he can still contribute. Considering he doesn't know who I am, or where the dishes go, and can no longer read his books that he loved, we take what he can still do and celebrate it. I have no idea when he will have one of those "moments" where he returns for a minute or two. They are so few and far between now.
Mary, Many long years ago my mother taught me part of a song that goes like this: Accentuate the positive, Eliminate the negative, Latch on to the affirmative, and don't mess with Mr. In-Between.
I think that is what you, and so many many more of us are doing. Keep it up! Mainly because it also helps our attitude as well as our spouse.
I think you all are great! I too try to help my husband maintain as much pride, dignity and responsibility as he can. He can still unload the dishwasher and make the bed. Like you say, it takes a really long time, and it isn't done perfectly...but its something he can do. I remind myself that everyone wants to feel needed and capable.
OK, sthetford, now I have that ditty stuck in my head. It'll probably keep bopping along in there all day. Thanks a bunch.
My husband still has chores that are "his" and he does them (most of the time) on his own, and if there are problems, I either ignore them or fix them when he isn't around. He does the dishes, and it is beginning to be a bit of a challenge to find them after he's put them away... but it's not hard to keep him from noticing what I'm doing, since I do all of the cooking now, and looking for dishes is a natural part of "my" chore. He changes the kitty litter (I love that man!) and we're going through litter at a pretty good clip now, since he doesn't remember that he's already done it. But so far, the cat hasn't complained about having a super-clean potty, and my husband is perfectly happy to go on extra outings to the store.
I just wish there were more things he was comfortable doing. Little by little, he's handing things to me that he normally would have done himself. I don't question when he does that -- it's obvious that he's unsure he can do them properly, and I don't want to embarrass him -- I just do what he hands me as if it's always been that way, and then try to find some other small thing he can do himself.
Even though my wife isn't very seriously affected, I have taken over the cooking. It was really bothering her to plan for meals. She would ask "dozens of times" what are we going to have for supper? Mostly she would make something that could be just heated in the microwave. Usually that was leftovers from something I had made the day before. Grocery shopping was also an experience. She would have a shopping list, but still ask multiple times whether we had gotten something, even though it was right there in the grocery cart. Now she still likes to go along, but I keep the list, and she is satisfied to let me do the shopping and she just follows along.
I think she is eating better now that I make a more balanced meal. Otherwise she would live on snacks (eg peanut butter and cheese) that she would eat throughout the day.
It helps to take away things that cause confusion, but let her do things that she can comfortably handle.
My DH was a heavy duty snacker for about 6 months - cashews, peanuts, potato chips and salsa and chips - he snacked when he wasn't napping. Now he rarely snacks. I guess it was a stage as well. He loves peanut butter and grape jelly sandwiches and hot dogs for lunch still. I just give him his Centrum Silver vitamin every morning. :)
therrja, I did and still do exactly as you said you do. I always tell my husband how thankful I am that he taught me how to do such and such, even in the late stage that we are now in he seems to respond somewhat to that.