How do other caregivers deal with the confusion love one has.

How do other caregivers deal with the confusion love one has.

My spouse sometimes talks about things that do not make any since. I don't know how to react. Any help would be useful. I am thinking he may be having hallucinations.

A MyParkinsonsTeam Member said:

You've made a point that I like to make when people praise my efforts as carer for my husband (55 years!) "This is what we signed up for", I tell them - "how can I do otherwise?" It does get difficult, and sometimes it's hard not to get snappy and impatient. But I have told him, and he does understand - when I get short-tempered, I'm getting angry at the disease, not at him. We carers aren't saints and I don't think we need to feel guilty about losing our cool from time to time. I also feel that we need to be treated with respect by our PD partners. I expect good manners and polite requests, and when he is being demanding I don't let him get away with it. He is like a child sometimes, and must be handled accordingly. I work very hard for him, and I deserve courtesy. It really is a team effort!

posted 5 months ago
A MyParkinsonsTeam Member said:

Good. Just be comforted in the fact that you are not alone. I have in the same situation as you. Much younger than him (14 years). I had to downsize my business, eliminate business trips, stay closer to him.

What's difficult to handle at times is the neediness, isn't it? Your needs become shelved. Everything is about him...and now.

I also have my struggle, but I try to remember that he's become a child...my little 81 year old. Ha!

You'll be fine, @A MyParkinsonsTeam Member.

posted over 1 year ago
A MyParkinsonsTeam Member said:

My husband passed away 13 months ago with Parkinson's and Lewy body dementia.He was diagnosed 9 years before and I am sure he had it several years before that. At first it was not real bad, but the last year or two it really progressed. So many times I lost my patience. And I still can't forgive myself for that. After Hurricane Harvey and all that went with it, he really went downhill. Got back in house and then had a terrible UTI, Hospital stay for 2 weeks and back home. Became bedridden at this point. We started Hospice and it was such a great help for me. They came and gave him bed baths 5 days a week.His eating and drinking started slowing down.Many times he did not know who I was or where he was. The last week before he died, he ate or drank nothing. He passed away in our home in a hospital bed. I am so glad I was able to keep him at home until the end. I still cry everyday. I miss him so much.The disease is a mean, cruel disease. There are so many things that goes along with being a caretaker. Unless you have been there, 24/7, you just cannot imagine. Never dreamed I could do some of the things I did. But......inside that body was the sweet man I had married and loved. I could go on and on about our journey but just pray he forgives me for sometimes losing my patience.

posted 19 days ago
A MyParkinsonsTeam Member said:

Good thoughts and very practical. Sometimes I just take a moment to go outside, even if it's cold!!!! Separating from the moment can help. But yes, it is the disease - and they never wanted to have it either. At the end of the day I have a journal where I write the blessings of the day - even in those most difficult days. There is always something to be thankful for. We did this early on in my marriage by keeping a little notebook by our bed and wrote down 3 things we were thankful for - sometimes we really had to dig into our thoughts. Now I fill out the notebook by myself but there is always something I can write down - even if it's "thank you Lord that he went to bed early tonight." :)

posted 5 months ago
A MyParkinsonsTeam Member said:

@A MyParkinsonsTeam Member
Yes, that sounds familiar! As have been typing this my husband woke up from a doze and said he would be whites on the chessboard. We had a laugh because neither of us plays chess and we haven't even got a chessboard. My husband comes to find me because he thinks I have called (I haven't), and often starts a conversation and I haven't a clue what he is talking about. It happens when he has been dozing and thinks his dreams are real.

posted 11 months ago
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