dementia

[JoAnn]

Haven't been on for a while, but am so frustrated I just felt I had to unload. My husband has had PD for about 7 years, but the past year it has turned into dementia. Lately he seems paranoid, confused, forgetful and always wants to know what I am doing from going to lunch with a friend (which happens maybe once a month) to our finances and why my name appears first on things. We have 10 acres and my daughter keeps 4 horses here that I take care of. She comes and works around and he has a problem with that cause she doesn't always check with him first. (Which by the way she does but he doesn't remember). I try to help him do things that he has trouble doing. But then he gets upset and tells me he can do it himself. All that happens is I end up cleaning up after him. He can't follow through with anything, even something as simple as shutting a cupboard door. I know he is having a hard time, but I need some space. He insists going everywhere with me. The store, MD appointments etc. The only thing he doesn't want to do (yet) is go to lunch when I go with a good friend. Which surprises me cause before her husband passed away we did a lot of things together. Anyway, that is my story and if anyone has any suggestions on how to keep my sanity and take care of him I would love to hear it. Oh yes. One more thing. Now he is giving me a hard time about all the meds he takes. He even cut back on his sinemet without the neurologist's approval. He said that the meds are making him act that way. Thanks for listening..

JoAnn

[heather]

Hello Joann
sounds like you are having a hard time my friend, my heart goes out to you.
Jim went through this stage, when he could get around, what ever i did was wrong, or not good enough, know he will ignore me[he can't walk or talk] and close his eyes, if i go to bingo once or twice a month, i no when i get home, he will refuse to eat, close his eye, not lift his arm to get undresses, shouting in his sleep aggressively, anything to get hos own back
Has hubby been diagnosed with dementia, or just what his doctor told you
They thought it was dementia with Jim, and we went to see a psychologist, and said no, it was more to do with his neurological illness, but most of all staying in control, of his home and family, which made sense, but didn't help me on a day to day bases,

What i found and this is only what is helping us...

I try to keep him involved with all things going on in the home
i would asking him how to do this or that, even if i new how to do it, keeping him busy simple jobs, that didn't matter if not correct, and i sneaked off and did jobs i didn't want him to do, I still ask him to shake his head yes or no, and point at things.
He still doesn't like me going out, but i just say hard cheese I'm going, which i would have said if he was well,
what I'm trying to say is, i treat him how i would if he was well
but letting him think he is still in control, and when it comes to his health , i say he has 2 choices, get worse, or stay well
he often refuses to eat so i just tell him what will happen, not what might happen
Does your daughter sit down and ask him about this and that with the horses, even though she doesn't need his advice, and if it's the wrong answerer, saying things like "oh thanks i would never of thought of that "
Please remember this is what works for me, and as we all keep saying we are all so different
take care my friend.


Just a little note for you my friend,
http://i10.photobucket.com/albums/a126/maesisaf/FriendQ5.gif

[Diane]

I understand so well what Joann means by frustration. My husband has acted just like that, and I have been so annoyed at what I perceive as his ingratitude and suspicion. When he told me he thinks it is the disease making him say and do those things, I felt he was just making excuses for being an a**.

Now, I am beginning to see that he really is not doing this of his own volition. I can see that he only reacts to reality, as he knows it. When he accuses me of hiding his keys, it is because he "saw" me move his keys (even though it did not happen). One of the three counselors we have seen over the years told me I can best deal with this by saying something like, "Now, Roark, remember that we have been over this before. Even though you think I did that (whatever it is), it did not really happen." At the time, I guess I was not ready to hear that advice. At the time, the accusation was so painful for me that I reacted with anger that he could even think I did some of the things he accused me of. Now, since the misperceptions are so common, I am able to see the wisdom of staying calm and saying, "I have not seen your keys. Maybe you left them in your other clothing pockets."

My husband also became very critical of others who came into our home, especially the caregiver/domestic who is now full-time for him. When he accuses her, I just say, "She does not steal anything. You have just mislaid the _________." With time and repetition, he now accepts her as the decision-maker on most things. She is in charge when I am not there.

The process is slow and painful, but I have learned that the changes which need to happen (he shouldn't drive; he shouldn't cook; he shouldn't control his meds; etc.) come one by one. We both grieve that he can no longer do each thing, but one by one he has had to turn over control to me and his caregiver. I don't know if there is a less painful way to do it, but I worried all the time, "How do I stop him from driving? How do I keep his meds away from him so he doesn't overdose? How do I start to manage his finances?" Now I see how it happens. For us it has almost always been the hard way (auto accidents and canceled insurance; mild but frightening overdose; overdrawn bank accounts and canceled credit cards) but I don't believe either of us could have done it any other way. He maintained control over those parts of his life until it was clear that he could not longer manage it. He reluctantly agreed to let me help him with each thing. Now he depends upon me to keep him safe and take of things for him.

Like Heather, I need to say this is just how it has been for us. I am sure other caregivers and PD sufferers have other ways of coping with these problems.

I ache for Joann and her husband having to endure this terrible disease as it slowly changes everything about their lives together. I can only add on a more hopeful note that our lives are still quite full and happy, even though different in so many ways. My husband has a hot tub and a golf cart, a young dog and a garden, a wife, a sister and a caregiver who make his life as stress-free as possible. Not too bad a life, is it?

Diane

[heather]

Hi Diane
I hope Joann reads that, thank you for sharing
like you Diane, I correct Jim, even though i no it is not him
as i feel it helps to remember/ come back to reality, hope that makes sense
"I can see that he only reacts to reality, as he knows it"