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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
I agree, Bernie, that the delusions and hallucinations are the most difficult to deal with at this stage. Dale is like a five year old in his stubborn refusal to do anything unless it is done 'his way.' We cannot operate on my timetable anymore. He is making all the rules now. The physical limitations are annoying but the mental confusion causes the most agony here. I am the enemy who is preventing him from doing the things that will make him well again. He is demanding .... constantly. That has been a HUGE change. That was not Dale before.


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


Sun Dec 26, 2010 12:26 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Mostly delusions and hallucinations
Leone, Dale has the most awsome delusions. Fran has the run of the mill ones. It was posted that sometimes they are in 2 places at once. It is as if our loved ones are living in a dream world where everything is possible. Most of the time I remember my dream or dreams upon awakening. In my dreams I too can be in more that one place, see familiar people with different faces, communicate with the deceased and a host of other off the wall experiences. The difference is I know that I do not have these magic experiences except when sleeping. It was noted before that nightmares are often carried into the awake hours. I also think that their normal dreams are also carried over.

I also believe that somewhere in their Lewy minds past experiences, dreams, and fears are tucked in their brains only to sometimes manifest themselves in their daily life. This is my experience with Fran.


Sun Dec 26, 2010 2:44 pm
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Joined: Mon Dec 20, 2010 11:35 am
Posts: 18
Location: Israel
Post Re: Mostly delusions and hallucinations
LTCVT, you are right but she was going to her weekly social meeting with a group of friends. I cannot be home to help her and I want to help her keep up her activities as long as she can. A couple of weeks back she had trouble telling her address to a taxi driver and someone who recognized her helped her out. We live in a small town where strangers are likely to help you in the street but point is definitely taken and this is something I worry about. The symptoms vary from day to day or even from week to week. The beginning of last week was confused, the end of the week better and this week is going well so far. I can't tell her on a good day that she needs to stay at home and I can't pay for someone to go with her.

Starman

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Starman*
Father of five and manager of my mum's life


Sun Dec 26, 2010 4:38 pm
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Joined: Mon Dec 20, 2010 11:35 am
Posts: 18
Location: Israel
Post Re: Mostly delusions and hallucinations
Bernie, this thing about being in two places at once is indeed weird and wonderful. I first met this last year when my Mum had depression. I had made an appointment with the psychiatrist who was coming to the house. I got there a quarter of an hour early and then my Mum suddenly said to me that she had seen a woman with a cat in the apartment but not in this one; in the other one which looks identical but is down the hall. I was blown away. The psychiatrist diagnosed pseudo-dementia associated with depression though I now believe that when she was depressed and unable to find the strength to keep a grip on her world, the LBD symptoms were showing through.

Since then I have got used to it. I used to try to explain it to her to which she once mused "Who invented this thing of having two places in one? I wonder why they have it, it's so confusing". The symptoms went away with treatment for the depression but have now returned sporadically together with the woman with the cats and the dog and the "sleeping beauties" who sleep in the living room.

Starman

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Starman*
Father of five and manager of my mum's life


Sun Dec 26, 2010 4:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Mostly delusions and hallucinations
Starman - the symptoms can start to fluctuate (a lot) from hour to hour and minute to minute at any time so it's a good thing your mom is in a small town where people know her and can help her. 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.


Sun Dec 26, 2010 5:06 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
I can't believe what has happened with Dale since I started this thread in mid November. I was thrilled at the time that Dale was still doing so well physically. His delusions and hallucinations were a beginning concern but I thought we could go for a long time with minimum in the way of problems.

I was wrong! In the six weeks since I wrote, Dale has become far worse mentally and physically. I had no idea that he would have such a dramatic decline in such a short time. There has been no medical emergency. There have been no new medicines.

The only thing that's new is a complete dependency on a walker and a huge increase in mental confusion. It has only been six weeks.

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


Sun Dec 26, 2010 5:18 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mostly delusions and hallucinations
Leone, It's startling to see your LO decline so rapidly. Same thing has been happening with Del except his decline has been going on for over a year now, so I have real empathy for what you are experiencing. Del is now lying in a bed at the VA. I hope against hope that they will be able to fine tune his meds so that I can take him home again.

I have no words of wisdom to impart. We seem to be on this path together. We are perhaps a bit farther along, but we are within hailing distance. It is heartbreaking to se your LO so changed. Take care, Leone. I am thinking about you.

Smiles, Nan


Sun Dec 26, 2010 5:34 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Thanks, Nan... I was so sure we had several years left that I started Dale on a molar implant routine some months back that is not finished. I thought he had years of chewing... and maybe he does. He rarely has swallowing difficulty....

But this mental downturn certainly has made finishing the procedure complicated. I had to cancel the last appointment with the dental surgeon due to his delusions. I hope we can make the next one.

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


Sun Dec 26, 2010 5:43 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mostly delusions and hallucinations
I hope so, too, Leone. We did dental implants for Del two years ago and I am glad we did. Eating is one of his last pleasures so whatever works for him is good. Make sure Dale gets lots of rest the day or two before your next appointment. I have found that if Del does something one day, then he has to rest the day before and the day after. If not, we are in trouble. Smiles, Nan


Sun Dec 26, 2010 6:25 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Mostly delusions and hallucinations
My dad became nearly totally incapacitated overnight in July 2009 (no sign of stroke or heart attack). Every time he had a downturn after that it was a big decline that happened pretty suddenly. I know what many of you are experiencing as these downturns really change our LOs lives as well as our own. You have my empathy and support. 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.


Sun Dec 26, 2010 9:06 pm
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Joined: Mon Dec 20, 2010 11:35 am
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Location: Israel
Post Re: Mostly delusions and hallucinations
Does anyone know if there is anything that can predict these massive declines? Does everyone have them? Will medication (Exelon in our case) help to prevent one?

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Starman*
Father of five and manager of my mum's life


Mon Dec 27, 2010 5:49 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Starman: I don't speak with much authority but I know from our experience that the ups and downs of this disease are the only constant and I don't know from day to day how Dale will be. It makes planning impossible.

I doubt very much if any of the medicines can prevent the variations. There is little proof that one medicine is better than another since there is no control group. All doctors seem to be able to do is experiment. They all say, "Here, try this." One patient will respond positively and another will be affected negatively.

Dale will be totally delusional for several days as he was before Christmas and then he is completely sane - as he seems to be so far today ... and I wonder what happened. In fact, he will also be completely able to walk unaided one hour and completely immobile the next. From my vantage point, nothing about this disease is predictable.

I also know that Dale is in much more pain than he was before - so that's our next step. He has more frequent periods of being unable to move so a wheelchair is going to be needed soon.

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


Mon Dec 27, 2010 8:25 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Mostly delusions and hallucinations
The only thing that is predictable about LBD is its unpredictability. I approach it from the viewpoint that every day is a new day and a new adventure. I roll with the tide and try not to second guess the what ifs. We have experienced the sudden drastic declines and strange delusions. My MIL may be still having delusions, but because she has a hard time communicating now she can't express it. Just something about the look in her eyes that she is seeing or hearing something we can't. Hang in there. friends.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Mon Dec 27, 2010 9:26 am
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Mostly delusions and hallucinations
Fran has been on the Exelon patch for about 5 years and it does not stop the ups and downs of this disease. As the ladies posted it seems nothing stops this disease. Yes all the doctors can do is experiment with various drugs. You will find out after awhile that most caregivers know more about LBD than your doctor. As stated, all you can do is go with the flow and don't burn yourself out trying to figure out LBD. It won't happen. We have been dealing with this for 11 years now and each year brings new symptoms, and declines. All I can say is hang in there, and keep posting for your sanity. We are all traveling down the Lewy Trail together.


Mon Dec 27, 2010 10:07 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Mostly delusions and hallucinations
Starman - the good news is that being on this forum, you are getting information that will be helpful to you ahead of time. The unpredictability and inability to plan for these changes really is about the only constant, as the 3 previous posts so aptly said.
We didn't even know my dad had a neurodegenerative disorder until 3 weeks before his big decline. I knew he didn't seem his normal self and he was declining physically so I took him to his drs. for a checkup - he was still driving and living alone prior to the checkup! Then 3 weeks later he was almost paralyzed from the neck down, delusional, hallucinating, totally incontinent, etc. He regained some mobility and cognitively improved some but he never was able to go home again - he could perform no ADLs other than he regained the ability to feed himself again (for about 6 months). He was totally dependent on CGs for everything from fixing his meals to giving him showers, dressing him, turning him over in bed, lifting him to transfer, etc.
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 10:15 am
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