Let's get this straight: how many of your spouses beyond stage five are suffering IN THEIR MINDS?
Yes, they do at earlier stages, when they can still understand what is happening to them and you're both confronting the future.
But beyond that point, WE, the spouses, are the ones suffering. Our spouses may think they are but they'll forget it in an hour or a day.
WE are the ones suffering. And we should treat ourselves as if we are. Get ourselves respite relief. Do what WE want when we can find it. Go shopping, or hunting. Ask the doctor for something to calm us down when we're dealing with dreadful behavior. This isn't being selfish, it's being realistic. And it is the only way that we will survive this.
briegull-I agree with you. With Bill in stage 6-7 I have stopped agonizing over lack of activities to stimulate him. I doubt that he would remember anything for more than an instant. I do treasure the fleeting moment when I think I see a flicker in his eyes.
Oh yes. I agree with you. At this point my husband is in early stage 6. I think he did suffer a little over a year ago when he was in early stage 5, but I don't think he does now. At least I'm not seeing depression and he isn't making me feel depressed either.
It is not being selfish to want to do something for ourselves. It is necessary.
Yesterday I was talking with a neighbor on the phone. Her husband probably has Alzheimer's. He is on both kinds of dementia drugs. She has been seeing symptoms for a while and the doctor agreed. One of the things I told her was that she HAD to keep doing some things for herself as long as possible. That as long as he was willing to do things together with her as a couple, she needed to keep doing those things as well.
She has a computer. If she actually manages to learn to use it, I'm sending her here. She needs us as well.
I dunno! I actually resented the feeling sometimes that DH was oblivious to the stress and pain his disease was placing on the entire family. I used to say to myself "He just gets to skate through this like we live at Disneyland. No responsibility to us, or for anything."
Then after his recent hospitalization for UTI and cardiac issues I could see some fear, and the pain of confusion in his eyes when he couldn't explain things. He is very late stage 6 by my guess now. He seemed to be incredibly "tormented" with the things his mind was telling him. Right now, in the Psych unit he appeared as gentle as a small child who missed his Mom and is so relieved to see her again.
My wife is probably in early stage 6. Most of the time she says she is happy. Occasionally she will comment that her mind seems to be going and she can't figure out what she is doing or where she is. Then it will pass over and she will be happy again. I can't find anything for her to do that will keep her involved. Right now she is, as usual, sitting in her recliner chair sleeping (she just woke up with a major twitch and said "what's wrong with me?" Then said "I don't understand".)
Claude is probably mid to late 6 now. Except for a few glimmers, he seems to be in a fog most of the time when he is awake. He doesn't seem to be happy or sad or have any fear of what's ahead.
Like Marsh said, I can't find anything that will keep him occupied now either. He sits in his chair and sleeps most of the time. If I turn the TV on, he sometimes will stare at it. When the nurse and/or home health aide takes his vitals and they ask him how he is, he just says "hmmmmm".
This morning, the delusions started again. He was "talking" to someone while he was in bed and started to get agitated with whomever he was talking to. It took me awhile to get him calmed down and back to sleep. All this happened about 4 am :-( I felt like telling whomever he was talking to, to take a hike -:)
<<how many of your spouses beyond stage five are suffering IN THEIR MINDS?>>
Hard to say for sure, but yesterday my stage 6c Frances volunteered, when I'd said something about how she felt, "I feel like sh**t!", which is VERY strong language for her. She has begun to display a bit more emotion about her condition during recent months -- sometimes breaking down and sobbing, "I wish I weren't like this!" after an unsuccessful pee patrol run or whatever -- making me suspect that she has felt some of these emotions all along, but has kept them to herself up to this point to spare us. And once or twice recently she has said something about dying, or not being around much longer. I try to jolly her out of such negative thoughts by reminding her that her father lived to be 90 and his mother 100, but she replies that she doesn't think she wants to live that long. We've never discussed the progression of AD on into the later stages, and certainly not its terminal nature -- I'm not sure she even rtemembers now that she has AD (she used to volunteer that information to folks).
M is at a point where she gets frustrated with ADL. She will cry a little bit. I think she is in stage 5. Most of the time she is happy, for now. I took mostly everything that can cause frustration away.
My dh, stage 5-6 mentions once in a while he doesn't need any more clothes or a new car because he probably won't be living that long. I tell him he will most likely outlive me because his heart/bp/cholestral are all good and mine aren't and that seems to make him feel better. No concern about how he would get along without me and that is the end of the dying talk until next time.
New Realm, I'm sure your husband's tormented now, and I'm sure all our spouses are when they're in crisis. And that IS suffering, no question. And I hope he's better??
I was thinking about day-to-day.. it's very easy for us to think we should be martyrs while taking care of our "suffering" spouse who's sitting there vacantly. But we must recognize that we are in at least as much distress, and tend to ourselves too.