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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 Mostly delusions and hallucinations
Dale has few physical limitations. He has trouble rising from the chair and he often sits on the arm of the chair rather than positioning himself properly. He falls on the toilet seat rather than sit even though there are strong bars on each side to assist him. He still writes clearly though he always wants to 'practice' before signing his name. He uses weights in our gym and still rides an exercise bike. His walk can be normal when he wants it to be. I can still move him around on a dance floor. He eats quite normally - though he can be messy. He is incontinent only during the night. He still has complete control of his bowels.

That said, serious delusions and hallucinations are now daily and he knows it. It now affects all communication with him. He is aware that he is almost always confused and that he cannot follow any sort of directions. He absolutely cannot separate his dreams from reality. He often thinks I'm two people or that I have left and some other people live with us.

When people look at him, they are generally not aware that he is ill. Aside from having trouble getting out of a chair, they don't realize anything is wrong. Some look at me as though I were 'making it all up.'

I could be wrong but when I read the postings, it seems that most are caring for those who have serious physical disabilities. Are there signs to predict how long Dale will be almost normal physically even when his mind has been severely affected by the disease? I'd like to hear from others who are having or have had this experience.

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


Sun Nov 14, 2010 3:15 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: Mostly delusions and hallucinations
I think the reason a time table has not been set is because of the unpredictable incidents that lead to a step down. I suggest you continue to keep him in as good overall healthy condition as possible. A sudden down turn seems to come following a UTI, a trip to the ER or hospital, other tramatic situations from which they never seem to really return to their previous abilities. Enjoy the level he is in and help it last as long as you can. As for others thinking you are exaggerating his condition, don't worry about them, smile sweetly and keep 'em guessing. [The forum members know you are telling the way it is. Never a doubt]

Dorthea

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"See this lady, she's 85, but she's nice"


Sun Nov 14, 2010 5:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Mostly delusions and hallucinations
Locally, there's a person who had psychosis and dementia as the first presenting symptoms. It took several years before parkinsonism symptoms appeared.


Sun Nov 14, 2010 5:13 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Thank you for your kind reply, Dorothea.

Are you writing from experience? Did you and yours have many years when the disease affected mostly his mind and he was otherwise in acceptable good health?

I'm trying to live as normally as possible. I take him with me everywhere. He is agreeable and sort of childlike most of the time. But like a child, he occasionally wants me to buy something that makes no sense. (My sister says I give in too often.) However, making a scene with a grown man (of limited mental capacity) doesn't appeal to me.

Again, thank you.

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


Sun Nov 14, 2010 5:19 pm
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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 - Robin
Thank you, Robin. I like the words 'several years.' I am hoping that I can keep this child-man as happy as he is now for 'several years.'

I think (and hope) I am learning to be patient with his paranoia and delusions. We are now just beginning to regularly laugh when we find something he has hidden 'from the bad men.' I am now studiously avoiding asking, "Why?" The answer no longer matters.

It certainly is a far different relationship than we had before. We both know it.

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


Sun Nov 14, 2010 5:44 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: Mostly delusions and hallucinations
Leone, in answer to your question if Mr Bobby's condition advanced as I described. Yes. We noticed a change in his abitlities to concentrate and remember people and their names in the 1980s. This continued as the 1990s progressed and he did begin to see strange trees in the road ahead, he stopped driving, spent a lot of time in his yard on his lawnmower.. His eyesight developed cataracts, macular degeneration, retina detachment and a series of surgeries ensued. Nothing helped and he ended completely blind during the summer of 1998. He exhibited the symptoms you describe which became gradually worse and we blamed his hallucinations and the people he told us he saw on his blindness until 2007 when he developed a UTI and a clot stopped the urine flow. A trip to the emergency room sent us home with a catherter until we could get in to see a urologist. He was put in the hospital for out patient surgery. [That was the first time I used the word Dementia. I saw the understanding concern cross over the doctors whole demeanor. Mr Bobby suffered what we now know was typical for someone with Lewy Body dementia when we saw a visible change toward the hospital staff. Upon arriving at the hospital he was loved by everyone with his normal disposition but by the time we left, only one nurse was willing to help us care for him because he was giving them all such a horrible time. They considered giving him an antipsychotic but I, even though I did not know about LBD at that time, sensed I needed to find out from a specialist what was happening. We brought him home and with him sleeping in his own bed he recovered somewhat and I began my search by putting in the word Dementia in google, coming up with this forum.

A trip to my primary care physicion sent me to a neurologist who told me it was strokes and I did not need a doctor, I had the internet. My PCP had long wanted me to see the local psychiatrist but before I could get that set in place, Mr Bobby became psychotic and he needed to be placed in the Senior Care section of our local hospital. This is a wing of the hospital which is a locked down facility and patients are seen by a psychiatrist. I have written about that visit extensively else where here on the forum. When we went home after two weeks there, Mr. Bobby was taking the meds recommended in the Boeve Continuum.however we soon found out at home that he was definitely over medicated and we started from scratch with the meds, with me judging how they should be added or taken away and under the guidance of this wonderful doctor, Mr Bobby lived out his remaining days from 2007 until 2009 as I have described on these pages before falling victim to pneumonia November 20th of 2009.

I really did not want to write all of this as it may frighten you but it has been written and you seem to want to know a time line. This is the way it was for us. In the end, the Mayo Clinic in Jacksonville accepted his brain donation for research and did, indeed, find that Mr Bobby had Lewy Body Dementia with beginning Alzheimers. Robin helped me make arrangements for Post Mortem brain donation .

But every case is different and the same. I hope this helps you and others. I am drained but you asked.

Dorthea

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"See this lady, she's 85, but she's nice"


Sun Nov 14, 2010 7:15 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Mostly delusions and hallucinations
Frank has difficulty getting into and out of bed and the same with a chair, like you husband he always sits crooked in a chair, 1/2 a cheek on the arm. Before we got the dx he was hallucinating, had delusions and paranoia, hidding, called 911 to tell them someone was trying to blow our house up, another time they were putting a chain around the house and hooked it up to a truck. The police were very understanding. His abilities compare with a toddler. He needs help with every aspect of daily living. In the last month I find that he doesn't seem to understand simple questions or requests. Maybe he just isn't able to process, but he doesn't answer or say "what" or "I didn't understand what you said". One night he spent 10 mins trying to tell me somethings, I couldn't get one word to work with, He finally gave up, I feel sad when that happens because he seldom tries to have a conversation.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sun Nov 14, 2010 7:47 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Again, you have proved what a nice lady you are, Dorothea. Thank you for taking the time to tell the story to me. It does help me so much.

I am actually encouraged by your story rather than frightened. What it tells me is that we probably have many more years of exactly what is happening right now and that I need to calmly adjust to it. We recently had the preparation surgery for Dale to have molar implants and that wound is healing nicely. We are hoping he has many more years to use the teeth that will be placed there.

Your story also gives me encouragement to stay in our home (which we love) and not rush to make other living arrangements. I can take care of Dale by myself as long as he is the way he is now. As long as I am healthy, I want to remain here.

I will also continue to make plans to take him on more trips. He has done very well with traveling so far. Life is too short to just stay home and wait for the end.

My mother (104) passed away in September. She also had a detached retina, macular degeneration, almost total blindness, and dementia at the end. I know some of what you experienced with Mr. Bobby. It was a terrible end for a wonderful lady.

I'm sorry I wore you out ... but I'm very grateful. Thank you again.

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


Sun Nov 14, 2010 7:51 pm
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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
Thank you, Gerry, for sharing your experience with your husband. I'm so sorry for all of us. However, I appreciate hearing from you because the hallucinations, delusions, and paranoia came as it did with Dale, before the diagnosis. Dale also called 911 and when the Sheriff showed up, I knew exactly what had happened.

Dale does try to dress himself but he can't figure out where the sleeves are and he always gets the shoelaces tangled. Dale still understands a great deal but he tends to put unrelated events together. That can make for a very interesting conversation. He is quite creative!

His delusions and hallucinations are very detailed and he still expresses himself well so he can go on for 15 minutes telling me about the people who are trying to buy our house and the paperwork that he knows we have somewhere. Last night, he thinks he received a phone call and he told me all about it today.

Along with you, I feel sad that this lovely man (who was a lawyer) has such a confused mind. It is tragic.

Thank you, Gerry. You have been a great help to me.

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


Sun Nov 14, 2010 8:05 pm
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Post Re: Mostly delusions and hallucinations
Hi. My father presented with complex delusions of persecution and visual hallucinations (the visual hallucinations were benevolent...he had an angel he saw that he called "Occibus") for more than ten years, perhaps much much longer. In the beginning they were occasional, then, in the last ten to fifteen years, they became incredibly intense and dad began threatening people, showing up at various places to get married to a woman that didn't exist, etc. He was incredibly hostile, and no authority would commit him. Mobile Crisis Unit refused to even come out to check on him. He had his water turned off and used rainwater, bottled water, and humidifier water to bathe and wash dishes. He thought the city water was contaminated. Also, he thought the neighbors came in and gave him "scarlet fever." I could go on and on with examples, but my point is to tell you that sometimes things happen this way. The only physical signs were constant pill rolling tremors noticeable as he drove. We just thought that he was extremely nervous, and probably paranoid schizophrenic. Actually, now that I'm thinking about it, those pill rolling tremors were present in the early, early '90s and possibly before; and, even though the acute psychosis began in the mid-'90s, the oddness was always there. Even in the 1970s, he misidentified my mother for his mom, and he went through a phase of frantic gardening because he thought we would starve if he didn't. (There was absolutely no reason for him to think this. He was employed as an engineer, and money was fine at that time)

My point is, this is one tricky disease, and my dad is a case where the hallucinations and delusions were present, very early on, even if intermittently. A lot of the timeline descriptions I've read just don't match up with my dad's case. Just know you aren't alone! He's obviously had it for 15 or so years...there just isn't a convenient "ah ha!" moment when he started to change. Only now is the parkinsonism problematic and very noticeable. He has very prominent bilateral tremors in his hands and feet, and his balance is very poor.

Unfortunately, there aren't any sure answers with LBD, just rough estimates. It's very frustrating.

Oh, another thing. He was completely financially responsible through all this. On a very superficial level, things looked okay. I was even told by the police that they couldn't interfere with someone "just because they were eccentric."


Sun Nov 14, 2010 8:54 pm
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Joined: Sun Aug 29, 2010 5:46 pm
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Post Re: Mostly delusions and hallucinations
Dorthea, your comments about what others think really hit home with me. I have three siblings who live across the country from my mother and me, and except for one sister who comes out two or three times a year, they do not visit. So all they have is their phone calls with my mother and my reports. Despite her confusion and terrible memory deficits, it is simply amazing how well my mother pulls herself together when my siblings call her, and how cagey she still is about disguising her deficits. I think this makes it really difficult for my siblings to understand how much our mother has declined--and sometimes, I wonder if they think I am making up things when I report the changes in her!

I am the only one who has contact with the nursing home where my mother resides, so of course I am the only one who hears the staff's reports about my mother's problems. And maybe it's because she is still angry at me for her nursing home admission, but I am the only one who hears her anger and complaints. Needless to say, I am the only one who sees her frequently and observes what is going on.

I understand and accept this, but often I wish that my siblings could have a clearer picture. Actually, it seems like the picture my mother presents to them is more comfortable, as they all seem to be in various stages of denial about what is happening to her. I feel as though I am doing my best with the reports I give them (group e-mails sure are handy) but it is going to be a terrible shock to them when things take their natural course and she gets to the later stages. I don't know what else to do.

Julianne


Sun Nov 14, 2010 9:35 pm
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Location: LA
Post Re: Mostly delusions and hallucinations
Julianne, how can you do more than what you are doing? It sounds to me as if you are a wonderful daughter. Your sadness is here and now, theirs will come in time. Yes, continue with writing to them and perhaps they will be moved to read some of the professional literature about LBD which will explain about SHOWTIME. Your mother can pull it off now but the time will come when she can no longer hide her condition. You will feel so sorry for her then it will not give you any pleasure in seeig your sisters realize what they have been missing. You can't make them accept that mother now has her limitations. I wish the best for you and the other daughters.

Please do not delete your written word. File the reports away for easy access. You will be glad you did.

Dorthea

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"See this lady, she's 85, but she's nice"


Sun Nov 14, 2010 10:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Mostly delusions and hallucinations
Julianne - there are so many people here who know just what you are going through as they are either going through it now or have been there before. My kids didn't really understand how bad their grandfather was until a few months ago when they visited. Because we are so spread out across the country they didn't get to see him much, and he was able to keep it together over the phone with them. I think they thought I was exaggerating how bad off he was until they saw for themselves. They were both pretty shocked and very upset. They left the ALF crying. My oldest son still can't talk about how ill his grandfather is.
I wish you the best. Come here often because we will all believe you and can empathize with your situation! 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 Nov 14, 2010 10:34 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post Re: Mostly delusions and hallucinations
Leone, my mother is also one who displayed hallucinations and delusions years before the Parkinsonism. In fact, we went to a parkinson's disease specialist twice while she was having obvious cognitive problems and hallucinations and the specialist saw no parkinson's. She also sits on the arm of a chair regularly (or misses the chair altogether). I chalk it up to visual processing. Her brain doesn't interpret correctly what she is seeing.

With regard to "giving in" to what she wants, unless her safety is concerned I almost always do that. As much as possible I respect her wishes and the desire to run her own life. She knows (as we frequently discuss it) that the exception is where she wants to do something unsafe. I feel no need to justify my actions on this to anyone. One night I had a dream where I could not understand what people were saying and I couldn't speak properly and I dreamt that I had delusions that were not true. I woke up and was so happy and relieved that it was a dream. It was terrifying to me. I think that I had a taste of what it is like for my mother every day. If I can give her something that provides a moment of joy in the midst of her struggles with the disease I am happy to do it. I hardly ever say "no" to her.

Nowadays my mother usually can't pull herself together for "showtime" but I remember how frustrating it was until I was able to get my sister from across the country to come out and give me a break for a few days. Asking for help is a powerful thing. Once my sister was face-to-face with the dementia for more than a few hours she saw how things stood. Unfortunately, she went from disbelief to guilt when she returned home at not being around to do more. Family issues can be difficult.

Good luck to you and to all of us fighting Lewy Body. Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Nov 14, 2010 11:22 pm
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Post Re: Mostly delusions and hallucinations
I am experiencing the same with dad. It is currently the delusions and hallucinations that we are experiencing and a little bit of a shuffle when first gets to his feet and he does struggle a little to get out of his chair. Apart from that he keeps good health. Mum is taking him for his annual appointment with the neurologist this weekend than taking him out for lunch. I would love to be at the appointment but wonder how mum would feel about me being there. I am just interested to hear what, if anything he will have to say, then I would leave for them to have lunch together.
I am probably worrying over nothing just want to be informed and not hear it second hand.,


Mon Nov 15, 2010 12:23 am
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