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 Mostly delusions and hallucinations 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Mostly delusions and hallucinations
Kelli - sounds like it would be really important for you to be at all his drs. appts. Can you just tell your parents you want to help as much as you can, and you know drs. appts. can be very stressful, so it's better for 2 CGs to listen to the dr. than just 1 person? Perhaps something like that will not make your mom feel threatened, and I'm guessing your dad would probably love for you to be there.
Hope it goes well. 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 Nov 15, 2010 12:38 am
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Mostly delusions and hallucinations
Just rang mum and she was OK about me coming along. I am always worried about confrontation I guess but I think her tone was an accepting one and all will go smoothly.


Mon Nov 15, 2010 1:49 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mostly delusions and hallucinations
I'm glad you're going to be at your dad's appointment, Kelli. Hope it goes well.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 15, 2010 1:57 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Mostly delusions and hallucinations
Kelli,
Maybe you could just ask your Mom if she would like company for the visit, she might just except !

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Irene Selak


Mon Nov 15, 2010 9:03 am
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Mostly delusions and hallucinations
Dorthea and Lynn,

I am so grateful for this forum and people like you who are so reassuring! I stumbled on this site and immediately passed word of it to my siblings but to my knowledge, none of them has visited. I know they will realize in time how much our mother has changed. I won't take any pleasure in it when they do, but it will be a relief if and when they see things for what they are. It might spur them to action.

"Showtime" is a great term--so true!

Dorthea, yes, I do have a repository for all of my messages to the siblings. It has already proven useful when I have to go back and try to remember when something occurred. So many details by now.

Thank you for your kind words!

Julianne


Mon Nov 15, 2010 3:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
Dear Dorothea, Irene, RKC, Julianne, AnnieN, Kelli and all the others who responded:

You have all given me so much by telling your experience with Lewy. I must admit that I kept watching Dale ... expecting that he would get worse physically .. and it just isn't happening. At one point, he wanted a walker; he has never used it. He also wanted a cane but never used that. He is just not that unsteady. He is careful.

The 'average life expectancy' of eight years must be based on a whole bunch of people who die from something other than Lewy delusions and hallucinations. Those symptoms may be traumatic for both the patient (victim) and the caregiver but I am convinced that they are not a terminal condition. Dale may be one of those who live another 20 years. His grandmother lived to 105.

I am also going to be cautious about adding any new meds. His personality changed with Namenda and I wanted my old Dale back. He is still an intelligent man and we can talk about his delusions... when he isn't having an episode. We will do that as long as we can.

As of now, I'm going ahead with our lives. You've given me the positive vibes that I needed to do just that. I have a completely new attitude today thanks to you.


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


Mon Nov 15, 2010 3:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mostly delusions and hallucinations
Leone, as I understand it, Lewy bodies form in different parts of the brain and the parts determine the types of symptoms that predominate. If Lewy bodies lodge in the brain stem, then blood pressure, heart rate, swallowing and even breathing could be affected. I think, eventually, these bodies take over enough of the brain that symptoms become severe. This happens even in AD, with the plaques that affect the brain in that disease. Even though AD does not usually involve physical impairment early on, as Lewy often does, its victims eventually lose their most basic--life preserving-- brain functions.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 15, 2010 4:40 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mostly delusions and hallucinations
That makes a whole lot of sense to me, Pat. It may be that Dale's sleep walking long ago was a first indication that what has happened in his brain is quite different from someone who has physical symptoms first.

He was known for creative thinking. Our businesses were in physical fitness equipment - He designed fitness rooms for the military and sold Nautilus. He taught both law and real estate to the troops in Germany. And, we had a very successful insurance business as well. (I was under contract in music, keyboard ... and Dale played the drums!)

That was Dale. In fact, our current pastor just called and said people are telling him that Dale was known as the 'joke teller.' He could tell a story and have everyone enjoying themselves. He started a pickle ball club in Cyprus and an English speaking Lion's Club. Together, we started a church in our home.

It's tragic that Lewy took so much away. However, we must move on. I will continue to take him everywhere I go. I play for a memorial service tomorrow. This is a new resolve for me. I can do this.

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


Mon Nov 15, 2010 5:09 pm
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Joined: Wed Aug 11, 2010 2:34 am
Posts: 54
Post Re: Mostly delusions and hallucinations
Pat thank you for that piece of information about Lewy affecting different parts of the brain hence each case is different. Some of us are in for a longer ride than others that is obvious. I think dad will be around longer as he seems to be fairly slow with his degeneration. I did hear once that if the condition initially progresses quickly that it continues on this path and the same goes for if it progresses slowly then that is how it continues. Do you know or believe this to be accurate?


Tue Nov 16, 2010 12:57 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mostly delusions and hallucinations
From what I've read here and on the other forums and from our own experience, it seems that illness [e.g., infections, surgeries and fractures] and disruptive experiences seem to cause the biggest declines.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 16, 2010 1:48 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Mostly delusions and hallucinations
And then again, there are anecdotal situations, like my dad, who overnight could not walk at all, had hallucinations, could barely use one arm and the other not at all, and seemed like he was at death's door. Then he learned to walk again with a walker for 3 weeks, could use his arms again for a while, but went downhill for the next 18 months, which brings us to today, where he is in final stages. Of course, who even knows if he has LBD - he's had so many diagnoses. It is so hard to tell what's going to happen. Lynn

_________________
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.


Tue Nov 16, 2010 11:57 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mostly delusions and hallucinations
I'm not really sure that the TYPE of pathology (Lewy bodies, plaques, tangles, etc) is what's important but rather that death of neurons (ie, atrophy) occurs in certain parts of the brain. In Lewy body dementia, the atrophy is in many areas, including the cortex -- where the thinking occurs.


Wed Nov 17, 2010 12:05 am
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Joined: Mon Dec 20, 2010 11:35 am
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Location: Israel
Post Re: Mostly delusions and hallucinations
Leone, what you describe is very much like where my mum is now. Childlike is definitely the description - she is dependent and naive, she needs help how to do things, she requests permission more or less. She looks at authority figures like me, her doctor or the manager of her day center like a child looks to parents and teachers.

Her main symptoms are like your Dale's, delusions and hallucinations. She worries that "they" listen to her phone line. She sees people in her apartment and sometimes thinks she is in two places at once that are somehow the same.

She has big variances in her abilities from day to day. Last week she was telling me about imaginary things that had happened to her and I was needing to explain to her how to do things like turn on her radiator, today she went out on her own by taxi - although to be fair I did need to give her guidance in how to call one and wrote her a note to show the driver if he couldn't make sense of her. I am making an application to get her more hours of care. I hope they come to assess her on an off-day.

She was diagnosed very recently, but now looking back I can see that she has had the symptoms for a year or two. They came out when she had depression and were suppressed when she received treatment for it and started to take things back into her hands. Reading posts on this site about the end stage symptoms I hope we are a long way from the, but as Mockturtle said above, it is also a certain amount of luck where the disease will hit first.

In the meantime, I am trying to see the time left as a gift even though it is a big task and a lot of work and worry. I have these weird conversations with her that I am now so used to, that I take them in my stride as being quite normal. Last week we went to see a geriatrician. "So you have hallucinations?" he says. "Hallucinations?" says Mum "no I don't have those". "Well what about the man you saw in your shower and the woman who told him to hurry up?" I ask her. "That?", she says, "that was real!"

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


Sun Dec 26, 2010 10:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: Mostly delusions and hallucinations
Good morning Starman - just a note of caution - with the symptoms your mom already has, letting her go out on her own could be a big safety issue for her. Knowing others whose LOs have been in this stage, quite a few have gotten lost when they are out on their own. You never know how badly disoriented they can get or when it will happen, but it is very likely to happen from what I've seen. A friend of my dad's whom he's known since they were born, got lost driving to 1 1/2 miles from her house to his for his 85th birthday party. She had no idea where he lived (or where she lived). Somehow she was found by the police and they took her home. And, BTW, she said "I've never been to your father's house." They had been close friends for 85 years......
It changes life a lot when they can't drive or go out by themselves, but figuring out how to deal with appointments, grocery shopping, etc. will be very important to her (and you) so she doesn't get lost. Lynn

_________________
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 10:57 am
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Mostly delusions and hallucinations
I find that the hallucinations are more of a problem with my husband then the physical side of this disease. There are devices to help with mobility and comfort, delusions and hallucinations are another matter. I get very frustrated trying to deal with his "friends" enemies" and feel that the meds really don't help much. But on the other hand maybe if he was not on these drugs they would be so much worse. I don't know, but not willing to find out.

My husband too had a very hardy appetite yesterday. At home I used to let him feed himself (food everywhere) and then I usually finished by feeding him myself. During this time he did not eat very much, now that I do it, he eats so much more. He is at the stage where he really cannot do anything by himself.


Sun Dec 26, 2010 11:03 am
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