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 End stages? 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
I wonder what the touch thing is about. I gently rub Derek's back sometimes but for the most part he doesn't want to be touched, either. He seems exceedingly sensitive to touch and sound.

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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 Mar 04, 2011 1:57 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Since it's pretty clear that he won't be waking, I decided to change his condom catheter. At first, he didn't want my hands anywhere near that part of his body... but I gently explained that I didn't want him to get a diaper rash. He then allowed me to wash him and put a new condom on.

I keep trying to talk to him... but there is minimum response. Mostly, there is no response. Just before noon, he clearly whispered, "I'm not hungry" so I won't try to feed him.

Pat... I remember others who have gone through this for a long time. My own mother lasted 12 days with no food or water. It sort of puts life on hold, doesn't it?

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


Fri Mar 04, 2011 2:54 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: End stages?
My heart goes out to you, Leone. My thoughts are with you.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Mar 04, 2011 4:01 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Thank you, Jeanne. Dale is now officially in hospice. I will keep him here and aides will come to the house to care for him.

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


Fri Mar 04, 2011 4:31 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Re: End stages?
Leone I read your posts with sincere understanding. You are there but let others help you. Read the literature that Hospice has available. We all care.

Dorthea


Fri Mar 04, 2011 6:06 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: End stages?
Leone,

You are a very strong lady but I am glad you will have aides to help you. What an adjustment for you to be at this stage. You will be in my thoughts.

Julianne


Fri Mar 04, 2011 6:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Thanks for all the loving thoughts! When the nurse was here taking Dale's BP, etc. Dale woke up so after she left, I fed him blueberries, fish, and broccoli. It was his only meal today. He is now sleeping again.

When I mentioned Lewy to the nurse, she had never heard of it. Aren't you all surprised???? NOT :cry:

I will attempt to keep you informed as the hospice experience progresses. I'm hoping for help in caring for him.

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


Fri Mar 04, 2011 6:35 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: End stages?
Dear Leone, I have a very strong belief in angels, and I am sending them to your good self and Dale. May they keep you strong and God Bless you both xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Mar 04, 2011 8:40 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Dale was hallucinating badly ... so I gave him his Clonazepam at about 7 pm. It's an hour and a half later and he is totally wired. He is whistling, moving about, and obviously not going to sleep again for a while. This Lewy insanity is going to be a problem even now. His mind is gone. He said he needed to die so 'they' can get the money.

It wears me out and it can't be good for him either.

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


Fri Mar 04, 2011 9:41 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: End stages?
Leone, I am so sorry that you are not having peaceful evenings. For us, Clonazepam does not seem to put Coy to sleep. It stops the acting out of dreams, talking, kicking, etc. once he is asleep. It is the Seroquel that puts him out within about 8 minutes. But I don't know if any of that applies to Dale in his present condition.

I sincerely hope that hospice is a positive experience for you.

Hugs!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Mar 05, 2011 2:24 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Jeanne.... With Dale, it is just the opposite....

Dale has been on Seroquel 100 mg since August of 09. He slept well until recently but he has been a sleep walker and his dreams were often physical even with Seroquel.

The Clonazepam was added for sleep just this week. His neurologist did not want to give it to him. His PCP ordered it when I begged. It is the sleep medication recommended by Dr. Boeve which was a strong endorsement for me.

Dale is talking, whistling, moaning, and thrashing... still ...before going to sleep. Last night, he was not quiet until almost midnight in spite of taking the pills before 7 pm.

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


Sat Mar 05, 2011 7:32 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: End stages?
Leone, IF only you could get a good nights sleep, it makes life with Lewy doable. Back last fall when I read your posts, Frank was so far advanced than Dale, I did envy the freedom the two of you had. It just shows there's no normal progression to this disease. Frank is still very mobile, we walk a mile each day, weather permitting, and we go out for breakfast with friends 3 times a week. His body keeps moving but his mind is gone, he very seldom talks, this morning, not one word and they had to help me get him standing, he just wasn't processing "stand". The drooooling :x is non-stop, so it isn't a pleasant experience but I think it's important, for him, to get out with others who understand.

My thoughts are with you and Dale, I hope tonight brings you some needed rest.

Fondly, Gerry

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


Sat Mar 05, 2011 10:03 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: End stages?
Gerry... It is strange how different each experience with Lewy turns out to be. Dale has never drooled. He has not required pureed food. He still enjoys fruit like blueberries. He cannot use a spoon and cannot hold a glass. That all happened quite suddenly. He tries to eat his fingers ... like an infant. His eyes are always closed so he doesn't open his mouth until I touch his lips with the spoon.

However, the mind is gone. He barely understands anything I say, I asked him this morning if he was hungry and he said he thought it was Sunday. I know his hearing is excellent. His cognition is gone.

He ate some blueberries at about 8 am and has been sleeping since then. It is 11:30 am now. It will be another day of sleep. Perhaps I'll feed him again about 4:30 as I did yesterday.

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


Sat Mar 05, 2011 12:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3341
Location: Vermont
Post Re: End stages?
Leone - I haven't had internet access for several days, thus I couldn't reply sooner. I am glad that Dale is receiving hospice services now and I know how every stage is another struggle for the CGs and other family members and friends. I was just looking at some photos of my dad from late June 2010 when my sons were visiting him. He looked almost healthy compared to what he was like 5 months later, and I know what he could and couldn't do when that photo was taken. It's amazing how much he declined in that time period. This whole thing is so hard. My thoughts are with you. It's a hard transition. 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.


Sat Mar 05, 2011 7:01 pm
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