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 sleeping 14 hours a day 
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
We fight a losing battle don't we. I think we are heroic for fighting the battle that we know we will lose. And most of us fight it with such determination. Maybe we are foolish, but like you, Cheryl, I couldn't live with myself if I gave up. Smiles, Nan


Mon Dec 13, 2010 1:57 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: sleeping 14 hours a day
Nan, Frank usually sleeps 11-13 hours a night and cat naps most days. We do have the nights when we are up and down all night long but they are fewer than before. He has no physical problems, healthy as can be. His Psychiatrist said it was just the disease, he's also wet every morning, I should say soaked. Again, it's just the way it goes, I never got the feeling he was starting to shut down, I think we have a long ways to go, and hopefully I won't run out of gas on the way.

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


Mon Dec 13, 2010 6:26 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: sleeping 14 hours a day
In my dad's situation, and granted he was 87 when his symptoms got really bad, treating infections and other things simply prolonged his life and therefore his suffering. I think if he'd been living with me, I would have done anything to keep him comfortable but avoided anything that would have prolonged his suffering. I loved him too much to keep him "alive" with no quality of life, but his medical people were totally into quantity at the expense of quality. He suffered way longer than anyone should have to suffer. And consequently, anyone who loved him suffered too. 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 13, 2010 9:33 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post quantity vs. quality - Lynn
I can't agree with you MORE..... Dale's quality of life is now so far from anything he enjoyed in life that I can't imagine using any drastic intervention in the future. Life has dealt him a dreadful set of cards. He was an amateur weight lifter and always active in sports. He loved fishing and cross country skiing. What is this? It's not LIVING......

To tell the truth, I wish for both of us that it was all over.

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


Mon Dec 13, 2010 11:19 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: sleeping 14 hours a day
Nan,
Sleeping 20+ hours/day would be a sign that the person is in the final stage of a disease. That final stage can last for many months.
Robin


Mon Dec 13, 2010 2:30 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
Thanks, Robin. I appreciate the information. He's alert when he's awake...just seems to need so MUCH sleep. This is so different from what he was a few months ago when he would be up and down all day and night. This is actually much easier on me, because he isn't falling when he's sleeping and he's so posturally unsable.

Anyway, I am glad to know ths is not the "end." Nan


Mon Dec 13, 2010 6:18 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: sleeping 14 hours a day
Dale has just gone back to the bedroom and it's almost 5 in the afternoon here. He slept from 9:15 pm to 9 am (almost 12 hours) last night ... and also had about a 2 hour nap in the early afternoon.

I am sure his sleeping is reflective of his boredom. He spends most of his time pushing his walker around the house... aimlessly.

About the only thing that interests him are meals..... 5 of them per day.

(He just brought a tee-shirt out from the bedroom. There are 'people' in the bedroom who are watching him and he didn't want to change his clothes in front of them.)

Oh, my....

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


Wed Dec 15, 2010 6:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: sleeping 14 hours a day
Oh, Leone, Dale sound so much like Derek a year ago! But he wasn't sleeping that much at night--he took naps, though. He seldom does now. :|

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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.


Wed Dec 15, 2010 6:32 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: sleeping 14 hours a day
I'll bite.... What does he do now instead of sleep? :twisted: Maybe I shouldn't ask......

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


Wed Dec 15, 2010 7:41 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
If he's like Del, he wanders around the house, teetering and freezing and tippy toe walking. Hard times. Smiles to you, Nan


Wed Dec 15, 2010 7:51 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: sleeping 14 hours a day
You're kidding.... Tippy toe walking? Really? Or do you mean those really short steps that make him REALLY slow so he hardly moves? The odd thing about Dale's steps is that he usually has that Lewy walk... but he can take regular steps if I suggest that....

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


Wed Dec 15, 2010 7:55 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
No, I really do mean tippy toe walking. He starts leaning forward in the walker and finally is walking on his tip toes. He dopesn't seem to realize it. I can use the "march" or "big-step" command and it will work for a step or two and then he is back to the tip toes. It is getting so the walker is a danger to him as it gets extended out so far that he can fall.

I also try to cue him not to lean on the walker which encourages the tp-toe walking. Unfortunately, it's common in advanced Parkinson's Disease. His Parkinson's symptoms are much worse than his Lewy symptoms and predated the Lewy by many years.

Nothing pretty about this, Huh?

Smiles, Nan


Wed Dec 15, 2010 8:49 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3359
Location: Vermont
Post Re: sleeping 14 hours a day
At least he isn't walking naked through the house at night with the lights on, across the bay window for the whole world to see. I'll never forget when my dad started doing that 1 1/2 years ago when I was at his house, and who knows how long before I saw him that started! 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.


Wed Dec 15, 2010 8:52 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: sleeping 14 hours a day
Derek can't get out of bed by himself anymore [for which I'm thankful, really] but he does wake up at 4:30 or 5:00 and start 'yelling' [he can't yell but it's his version of yelling], "Help, Help", wanting to get up. And he wants breakfast immediately so we have an early start on the day, for sure. But at least he sleeps through with Seroquel whereas he used to wake up at 2 or 3 in the morning wanting to get up. He's in bed by 9:00.

_________________
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.


Wed Dec 15, 2010 9:09 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: sleeping 14 hours a day
Dale is now heading toward bed at 9 pm. Tonight, he was ready a little earlier and I told him to head toward the bedroom and I'd be there shortly.

I constantly need to remind him to use his walker... so I told him to take his walker. He looked at the walker and, after a few seconds, he said, "What do you want me to do with it?"

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


Wed Dec 15, 2010 11:16 pm
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