After reading Joan' Blog on Friday I can't find any comfort in this article. I can't tell you how many times I have heard people say how far Alzmr's progression has gone and in the same breath comment on how they are playing cards, talking to there political representatives, taking trips, visiting family, going to day care and enjoyind life. I read about how happy we are to have what we have, but what do we really have? My wife has just gone through two weeks of attending daycare with the aid of a registered nurse to assist here basically perscribe by our Dr.. The results are a miserable alzheimered person ( and you all know what thats like to deal with) a $ 800.00 dollar bill and a profesional opinion from the nurse that none of the things we have tried is helping. I am truly happy that the people that Joan is describing are getting along, but this makes me think that we must be farther on our journey than these folks. I don't think anybody has written a realistic book about how we deal with really alzheimered folks because it is to painfull and nobody should have to see the real effects of this horrible disease until they arrive at the point that we are in. I have just put my beautiful wife to bed and am sitting writtjng this and crying.
Well...it is very hard, when you're in one of your deepest trenches of this stupid game, to take a bird's eye view, which is what the article is doing. We all feel like crap, at regular intervals throughout this process, and today I'm right there with you selwyn. Very sad, very down. The man profiled in the article has clearly lost a whole bunch of abilities too...it's just that the story was written by an objective third party, rather than being written by the spousal caregiver.
Oh my friend, feel my hugs. Hopefully Joan's book WILL give a realistic picture of what our lives are like. Dementia sucks, plain and simple. My husband at age 62 with FTD, is wheelchair bound, confused and now living away from home in a nursing home. Nothing in our 6 yr marriage has gone as we had planned when we were all starry eyed and falling in love. This is hard, heartbreaking, depressing, miserable, unfair, and so much more. All we can do is continue to be the best caregivers that we can land on some days we will feel better than others. Hang in there, you are never alone. Arms around, Susan
The other thing that I noticed in the article is all the support and help they get from family, friends and people from where he worked. I don't know of anyone here that has that much support or if there is, they are few. All the support could be making the difference in how it is effecting them emotionally. I agree too that when she talks of how far he has progressed then talk about doing things that most of your spouses can't even dream of doing, that bothers me. Also, when she wrote he was able to relearn things he forgot. I wonder if she may be only talking of occasional not all the time. If he is doing as well as said, evidently the parts of his brain being affected is different than most of yours. (I write most of yours because my husband is still in the mild stage - his short term memory being what is most affected as of now). I truly hope her husband stays in the place he is right now for a while. I only wish her and her family the best.
I question the '"relearning" too. But, maybe what they're actually talking about is how some skills seem to flicker--gone-back-gone again- before they disappear.
I also believe that the support they have is phenomenal, and definitely not what we've seen as usual.
However,if their being out there advocating can effect any improvements, more power to them.
Something else to think about. Just maybe, if more people had a look at what it's really like--maybe they'd be more open to making things better before they have to deal with it. And at the rate cases are inncreasing they will be having to deal with it.
There is no question that I'm not getting the kind of help that is being discussed. It is also true that in an emergency I've had neighbors who not only stepped up to help me with him, but got ME to check out the lump the doctor had found so not only didn't I have to take him with me I didn't have to go alone. (FYI, I'm one of the lucky ones. The lump reabsorbed in the three weeks between the doctor's visit and the tests, which is one of the reasons I chose to wait three weeks.)
And yesterday two of my neighbors came to just visit and will be coming back in two weeks. It is the kind of "help" they are capable of doing. They also run little errands for me from time to time. But because they do this stuff I am not totally isolated.
I've read Joan's blog. It sounds like the man is at early stage 6. That means he can't be left alone anymore. It also means that he is only at the early stages for a lot of stuff. My husband is also early stage 6. My husband can't travel anymore, but until quite recently he was taking 2 hour walks every day and he still does all of the life activities on his own. He can't get himself a meal, but that is partly because we moved just as the disease began its very early stages and we have all new appliances, and he never learned how to use any of them back when he still could have learned them.
One thing that seems absolutely true to me is that if you make them continue to do certain activities they CAN do them longer than they would be able to if you took them over earlier. I took too many things over too early and they have been gone from his life for a very long time now, but the thinks I insisted that he keep doing (like fixing his own breakfast) he has continued to be able to do now.
I'm also aware that part of my isolation is my own fault. If I had continued to go places and see people I wouldn't be as alone now. If that article helps anyone in the early stages to keep themselves out in the world, it is a very good thing.
Betsy gave me permission to print that article. For more insight into their relationship, you can click on "Our Readers' Love Stories" on the left side of the home page - www.thealzheimerspouse.com
selwynfarmer,
You summed up the reason for this website in your statement - "I don't think anybody has written a realistic book about how we deal with really alzheimered folks because it is to painfull and nobody should have to see the real effects of this horrible disease until they arrive at the point that we are in." I started this site because no one talked about the "real effects" of Alzheimer's Disease on a marriage, and I thought I was the only one whose life long, loving, strong, partnership, was in ruins because of this disease. Since the beginning, I have tried to raise awareness, get the word out to spouses and the public of what Alzheimer's Disease really is.
Dave and Betsy have their problems and difficulties, but they choose to focus on the positive as much as they can. And yes, they do have a good support system, which not everyone has.
Starling said: One thing that seems absolutely true to me is that if you make them continue to do certain activities they CAN do them longer than they would be able to if you took them over earlier. I took too many things over too early and they have been gone from his life for a very long time now,
Me,too. Impatience, I think. But I've continued to expect him to get in and out of the car and get in and out of his stair glide chair himself, and he can. Thank heavens!
If mine says he wants to do something - whatever it is - I let him try at least. If he messes it up, so be it. And, I try to ask him to do things and he will always try. Sometimes good results, sometimes not. But I think the repetitiveness helps in the long run.
Thanks, folks. This thread has made me realize that because of recent decline I've been taking over so many things that DH used to do. So today I got him to help a lot again and it all went pretty well. Takes a long time but he does enjoy "helping" especially with food. (HE LOVES FOOD.) Tonight I asked him if he would cut up the runner beans for supper, and he did it all: he has to get out the antique cutting machine that we inherited from his Mom, screw-attach it to the edge of the window sill, then put the beans through it one at a time to slice them very fine. He did it all, even cleaned up the machine and put it away (after asking me where it went); he was proud of the job and ate a lot of them. He always helps empty the dishwasher but I let him do the brunt of it today; it helps to keep him aware of where things go. He always used his key to double-lock the front door when we leave the house. Lately he's been confused about finding the key in his wallet and why the door should be locked, but I'm going to get him to do this again starting tomorrow. I'm usually in a hurry to get going and then it's just so much easier to do it myself. WRONG.