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 Another Day - Another delusion 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Another Day - Another delusion
Friends wanted Dale to go to Lion's Club today but he woke with a delusion that he cannot shake. 'They' want a meeting. 'They' left a note on the door. 'They' will be unhappy with us. He is fully cooperative and quite mellow. There is only that wide eyed look that tells me he sees things that I don't see.

Wouldn't it be nice if we could wave a magic wand and they'd be delusion-free? I'm going to take him out of the house later and hope that this doesn't continue. That often works.

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


Thu Nov 18, 2010 1:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another Day - Another delusion
I've often wondered if electroconvulsive therapy [ECT] would work. I once worked with a psychiatrist in Seattle who was a proponent of its use in a variety of brain disorders besides just intractable depression. My grandfather had several treatments for depression. I understand Jackie Kennedy also had some treatments. Unlike how it is often portrayed in movies, it is a painless, safe procedure [safer than drugs] with only some memory loss in the period immediately surrounding the treatment. I wonder if it's ever been tried for LBD? Guess it's something I could research. I think I'll post this on the other forum, as well, in case anyone might have some knowledge of it. Wouldn't it be great if it worked?

On edit I see that Robin had posted on this topic in 2006: http://community.lbda.org/forum/viewtopic.php?f=4&t=2315

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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.


Thu Nov 18, 2010 2:37 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Another Day - Another delusion
Interesting idea, Pat. (ECT) I also noted your remark that 'something popped into the mouth seems so harmless.' I think about that so often. As you know, I keep wondering what the combination of all these pills is doing. How can we possibly know?

Are we doing more harm than good? (They once thought blood-letting was a good idea.)

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


Thu Nov 18, 2010 3:22 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post ETC - Pat
I just remembered that we had a friend in Cyprus who suffered with terrible depression and had that treatment. She was a young mother at the time. They had such high hopes but she told me later that it 'removed the good memories and left her with the bad ones.' She had hoped it would be the other way around.

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


Thu Nov 18, 2010 3:29 pm
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Location: WA
Post Re: Another Day - Another delusion
Interestingly, blood-letting did serve a useful purpose in some cases by lowering blood pressure.

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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.


Thu Nov 18, 2010 3:53 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Another Day - Another delusion
That plan to take Dale out of the house today because of his early morning delusions didn't materialize. In fact, he was delusional most of the day so conversation was unusually limited. He made strange comments from time to time and I ignored most of them.

I tried to be cheerful and make a few light hearted remarks - but I find days like this extremely stressful. I guess I keep waiting for the other shoe to drop. There is tension in wondering what he's thinking. I wish I could relax and just let it happen. There is nothing to fear as far as I know. He is anxious to be helpful and cooperative.

He 'saw' a car drive into our rear yard. (It didn't happen.) He asked how many people were going to stay for dinner. (I remembered that Pat once said there were 30 waiting outside on the bus. :lol: )

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


Fri Nov 19, 2010 12:17 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Another Day - Another delusion
Leone,
When there are days like this the best you can do is redirect, redirect, redirect and try to get his thoughts elsewhere, I know that can be a task in itself!

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Irene Selak


Fri Nov 19, 2010 12:02 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Another Day - Another delusion
I wanted to also mention and clicked submit to soon was I often saved our photo albums for days like this, they were a major distraction for my husband, we would go through them sitting side by side and stop at each page and talk about them, that was a saving Grace for me!

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Irene Selak


Fri Nov 19, 2010 12:05 pm
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Post Re: Another Day - Another delusion
Irene, that's a nice idea and we do go through albums sometimes when he's calmer. When he's on one of his evening fixation agendas, though, he's too restless and can't be distracted by anything. Last evening I gave him 1/2 of one of his bedtime Seroquels and it didn't really help. I haven't found anything to help--we just ride it out and wait for bedtime. Oddly, by around 9PM he becomes calm, then I get him ready for bed, give him his bedtime meds and put him into bed. Whew! I'm always so grateful for that time of night! :P

Derek has been delusional all the time for almost two years. Prior to that, it came and went. By delusional, I mean he always thinks there are lots of people living here [even when he doesn't see them], has Capgras, thinks we have two houses, etc. Are most people with Lewy delusional all the time?

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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.


Fri Nov 19, 2010 1:02 pm
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Post Re: Another Day - Another delusion
Pat,
I think many of them are, they never really concerned me if they seemed harmless, now the ones that caused panic they were a different story and that's how we came to adding the 4pm Seroquel.

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Irene Selak


Fri Nov 19, 2010 2:14 pm
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Post Re: Another Day - Another delusion
Irene - Did you give your husband Seroquel every afternoon at 4 pm? How long did that go on?

Dale's uncontrolled behavior is so rare at this point that I can't imagine making an afternoon dose a regular thing. I give him Seroquel before bed because we both need sleep and that seems to guarantee a full night for both of us. I think I've given him Seroquel about three times during the day. It was always with his full knowledge and consent.

Was your husband's afternoon behavior making Seroquel necessary or was it used as a preventative?

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


Fri Nov 19, 2010 8:55 pm
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Post Re: Another Day - Another delusion
Leone,
We started out with seroquel just at bedtime, then added the 4pm and then we added a 10 am small does he took a total 150 mg per day, the 4 pm was added because of late afternoon behavior and later down the road we added the morning as his mornings were good for a long time but then that disappeared, I would say the added medications were for probably 18 months .

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Irene Selak


Fri Nov 19, 2010 10:28 pm
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Location: Ocala, FL
Post Re: Another Day - Another delusion
Dale's behavior these days is more sweet than alarming.

Tonight, as I was getting him ready for bed - and trying to help him take off his clothes, he kept trying to tell me something. When I finally paid attention, he said, "Can I walk you home? A gentleman always walks his best girl home." He didn't want his clothes off because he was going to 'walk me home.'

It took me about three tries... but I finally convinced him that we are both at home. Then he said, "But then where are you going? What time are you coming back?"

I said I'd leave the bedroom door open..... :cry:

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


Sat Dec 04, 2010 9:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another Day - Another delusion
Aw, Leone! Doesn't it just break your heart? I'm often taken aback by just how disoriented Derek is, even when he seems to be 'with it'. But he comes out with the cutest little non sequiturs that make me smile. And he'll sometimes chuckle silently over some secret thought that I wish I could share.

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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.


Sat Dec 04, 2010 10:31 am
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Another Day - Another delusion
That reminds me....

We were at the geriatric psychiatrists on Tuesday. Bill was telling her that he's have a few hallucination again - for example: someone sitting in another chair in the same room or standing there. Then the door to our treatment room opened and there was another patient (I guess) about to come into our room. Bill quickly pointed at her and said "Now that wasn't a hallucination!" We all laughed.
The outcome was - next appt - one year! Yay!

Otherwise, he is holding his own pretty well since his dx in Oct 2008. Still very mobile, comes with me shopping and running errands, takes care of himself and uses the treadmill every day. Likes to watch the military channel on TV.

We even moved this past August and he's been good with that. Loves the new place. Even did the mowing this fall!

He is in a good place right now. If only it would stay this way.....

Karen


Sat Dec 04, 2010 11:20 pm
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