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 Mostly delusions and hallucinations 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Lynn... I just have to chime in on what you've written. Dale had an appointment with his neurologist on November 29th. Dale was doing so well physically that he walked up and down the office hallway with perfectly normal strides. He was even swinging his arms normally. His attitude was positive. Our main problem was an increase in delusions and hallucinations.

The doctor asked if he was completely off Sinemet and I said he was. The doctor's comment to Dale was classic. I know that now.

He said to Dale, "Be sure to use your cane or walker all the time now! You don't want a broken hip."

I thought it was an odd comment because Dale wasn't showing any kind of weakness at the time. Little did I know..... Two weeks later, Dale was having more physical difficulties than ever before. (Was it the Sinemet that kept him mobile? We'll never know.)

The delusions have increased anyhow. In fact, he can't remember where the rooms in our house are at this point. He can't remember how to get into bed. He is confused about almost everything.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 11:58 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Mostly delusions and hallucinations
I'm wondering if he CAN'T get into bed (from ataxia maybe?) rather than he doesn't know how to get into bed. Weeks before my dad went in the hospital I noticed him one night standing next to his bed, then crashing like a tree onto the mattress. He had a very difficult time maneuvering himself so that he was lying normally in bed instead of across the mattress. I tried to help him and he said he was fine so I went to bed. With both of our doors closed I couldn't hear him calling for help so he called me several times that night on my cell phone. He was all tangled up in the covers each time I went in to see what he needed. A few weeks later I was talking to a nurse at the rehab center where he was at that point, about his not getting into bed in a normal way, his inability to get himself clean in the bathroom and shower, unable to bend over to put on socks and shoes (and couldn't use the aids that the OT had given him) and she told me he had ataxia. That explained a lot about his behavior & inabilities over the previous months. You may want to ask a dr. about that if you haven't already discussed it. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 2:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Lynn.... Early in this disease, we went to therapy sessions twice a week for about six months. We learned a lot of ways of doing things.

Getting into bed was one lesson. He learned to first sit on the edge of the bed, then lean his shoulder down toward the pillow and then swing his legs up on the bed. That usually works well for both of us. He does the sitting and usually does the shoulder leaning. I finish by helping him lift his legs into position.

My comment about his 'forgetting' is that he now needs to be prompted to use that method. In fact, yesterday, he was alone in the bedroom after going to the toilet. I came into the bedroom and he was in the middle of our huge king size bed. I asked how he got there and he said he crawled in from the bottom of the bed. That must have been quite something to watch!!!!

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 2:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Mostly delusions and hallucinations
Same with my dad - he went to months of therapy. Then he just couldn't do things because of the ataxia, no matter how much therapy he was getting. I hate to sound so grim, but I wish I'd known a lot of this stuff way before I did so I might have had fewer bad surprises. Keep encouraging them to do as much for themselves physically as they can. Reaching, pulling, walking, carrying things, whatever they still can do, will keep them a little stronger and that will be a help to you as they decline physically. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 2:40 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Aside from the 'freezing episodes,' Dale is still strong. He was an amateur weight lifter and he still has strong arms. I encourage him to do as much as he can. As you can see by my signature, I'm 75 and not eager to do everything for him. :lol:

What is new is a failure to put both hands on the arms of the chair, for instance. He'll put one hand on an arm and then flop into the chair. Or he will grab the brake below the handle on the walker rather than the much larger handle.

His awareness of his environment is gone. At lunch, he wanted to cut a door through the end of the kitchen to use as a 'fire escape.' This house has five exit doors from various parts of the house and we don't need another one. It's also on one level so we don't need a 'fire escape.' He wanted me to get a tape measure to see how difficult it would be to cut one from the breakfast area. Weird.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 3:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3332
Location: Vermont
Post Re: Mostly delusions and hallucinations
Every day a new delusion, huh?
Interesting about the 2 arms not working the same. My dad's left leg got very weak and was not too functional before he was hospitalized last year, then his left arm got almost not functional, then his right leg, then his right arm. He had all sorts of tests done on his left leg starting about 3 years ago, plus several MRIs. No sign of stroke, no apparent reason for his left leg to not work. He almost dragged it for a few weeks before he couldn't walk or even hold weight on his legs. It was really odd.
I think you should keep a list of Dale's delusions. He is very creative! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 3:25 pm
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Joined: Mon Mar 01, 2010 5:33 pm
Posts: 7
Post Re: Mostly delusions and hallucinations
AnnieN, I know you wrote in Oct. but I just read your comments today. I wanted to comment on the dream you had. I had the same dream about a month ago. Normally, I forget my dreams as soon as I wake up. But this one I remembered. I felt just like you did and it helped to give me some insight into what my husband is going through.

Blessings to all, this is a difficult journey.


Fri Jan 07, 2011 11:38 am
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