For those who care for someone with Parkinson's disease
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Has your husband ever asked, "Are you my his wife?" Mine did that last night and also asked if I slept in the bed last night. I told him I was his wife and I am always here for him. He realized I was his wife when I said that, but it's just scary that he gets confused that way. He has also said that things aren't the same in the house. He hates feeling this way at certain times. Is it Parkinson's or the start of dementia? Why does he think that way? Is it part of hallucinations? He also has a thing about his wallet. He always wants to carry it but misplaces it sometimes. The last time with this afternoon. He said he put it down in the bedroom but I looked high and low and then thought about the briefcase which he opened yesterday. Well low and behold that's where it was! We only use the briefcase to put papers in it once a year, but I saw him looking in it yesterday, thank goodness or I wouldn't have found the wallet. It keeps me going, but I don't want to take the wallet away from him yet. |
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This sounds very familiar, Lynnie. My husband asks "are we married?" Recently he has asked "who are you?" He often says now "I don't know what comes next." or "I don't know who I am." He sometimes thinks we are in a hotel, or asks when we are going home. One day he said to himself, and to me, that he found me very appealing, and that he'd like to consider having an affair --- then checking himself, added - "but that wouldn't be fair to my wife". took him a while to figure things out. He fortunately could be amused, and not embarrassed. That feeling that things aren't the same might be an early sign of mild memory loss. Looking at something and not finding the mental images that link it to his past and to his present. I think it was, in his case a very early sign of disorientation and memory loss. These are a part of Parkinson's Disease Dementia. It was very mild for a number of years, but in our case it's become more severe recently. Now he retains very little from day to day, and cannot remember our meeting 5 years ago, nor our wedding, nor moving from the old house to this one. As for the wallet, if you are concerned, hang on to an expired credit card or two to put in his wallet while you carry the active one. Or, if you aren't ready to do that, get a tracking device to put in his wallet like a TrackR (there are better ones, but those are the one I bought) so that you can search for missing things. AND. Start now to get the Power of Attorney documents in place and signed while he is still competent to do so. I waited until very late in the game and am very lucky that he was able to knowledgeably give me POA. It's important. I posted a day or so ago about a book called Contented Dementia. When the time comes, it is intended to make dementia less scary and disruptive, and it has already helped to make life calmer for us. Wow. I hope this wasn't too much of a depressing brain-dump. I can tell that I'm too tired to censor myself and only hope you know that each person's PD has its own trajectory, and your experience may be VERY different. Rotten rotten disease. VV |
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Thanks Violet I don't feel so alone now in that respect. We had a trailer up until this fall when we sold it, so I thought he would be more comfortable now that we are staying in one spot although we don't go there in the winter of course. It will be less stressful for me next year so I don't have to think about the trailer and travelling back and forth with clothes and food. Anyway, I was considering sending for that book. I see it's available on Indigo/Chapters too. I agree this disease is rotten and why did it happen to such a nice guy, but that's the way life goes. We still have each other and I'll continue to look after him. People say I should get some help, but I am going to wait to see how things progress. I know I need to have time to myself and not worry about him when I'm away. I don't go for very long anyway, just get groceries or go to the pharmacy or get the mail. I have even gone swimming for an hour at the pool which is just a few minutes from our place and he's been okay so far. Thanks again for the reply and I'll get that book after Christmas....... |
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Lynnie and Violet This sounds all too familiar. My husband is so confused too. Sometimes he asks when are we going home and where do we live. Oh boy it's scary. As far as the wallet goes it's mass confusion at our house. He likes to carry a money clip and I have to keep track of it all the time. I am also using outdated cards when I can. His neurologist has not diagnosed it for sure but it may PD Dementia with Lewy bodies. I am worried I won't be able to handle him in the future. It's definitely worse when he is tired. Always better in the morning and after a nap. Luckily he is easy as far as his moods go and he is a gentle man now. He is very quiet unless he needs help. So sad for all of us. Just a few years ago he was riding his motorcycles and we pulled our trailer everywhere. Luckily we had many wonderful years but this is so hard to believe. We have to stay strong and get help. He really likes his caregivers and asks "who is coming today". I'm grateful for that. I never go away for more than 3-4 hours. I think I will need to be out longer soon. |
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My husband has dementia but so far still knows me and the people he sees often. He gets confused in the afternoon, wants to pack, not sure if we are home, moving or on vacation. I give him seroquel because once he starts getting agitated it escalates and can get ugly. He's mad because he can't drive and has no independence, poor guy. I haven't been able to leave him alone for a couple years now. He falls a lot also. I do have caregivers now and then. Dementia sucks but really it took years to get to this point. I would think occasional lapses could be blamed on medication on/ off times. Early dementia might be helped by one of the Alzheimer's drugs such as Aricept. I have a wallet I keep in my purse with his ID and medical cards. He has his old wallet that I put an old veterans ID, AAA card and some money in. |
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The doctor said if the hallucinations get too bad, they can give him something, but I forget exactly what. We see the MDS in Feb. again and his family doctor afterwards, so we'll see what they say. |
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| Boy, you hit me with surprise. Just this morning husband asked me "when did your hair turn white?" Well, it's been ten years since radiation and chemo and it turned white then. Did he not look at me all those years. LOL. No, just a senior moment, kicked into action by Mr. Parkinson. |