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 Not eatting or drinking 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not eatting or drinking
Gerry,
Do you still have the help of hospice? Do they have someone who can try to communicate with Frank -- social worker, religious person? I found that gave great comfort *to me* when others lovingly talked to my father about death.
Robin


Tue Oct 25, 2011 11:32 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Not eatting or drinking
Robin, We have Hospice, the nurse and Chaplain both came today. I had a good talk with the Chaplain, she will be there to help when the time comes. We also have a social worker that has been very helpful. At this point Frank can no longer swallow, so we'll watch and wait to see if there will be another change.

Thank you,
Gerry

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


Tue Oct 25, 2011 12:49 pm
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Joined: Sun May 02, 2010 9:27 pm
Posts: 12
Location: North Las Vegas, Nevada
Post Re: Not eatting or drinking
Gerry...I know how difficult this is. I have heard from other caregivers that their LOs won't eat, drink, etc. and then all of a sudden they are eating like they never ate before. I was caregiver for my dear Mom. She had LBD, but she also had the neuroleptic malignant syndrom. Until a couple days before she passed away she would ask me to take her home (Capgras Syndrome) and I would. I had family visiting at the house so I really enjoyed these last moments of just me and her together. The last time she got out of the care and walked into the house with more energy and speed than I had seen in many years. This rollercoaster does have it's ups and downs. The part of the brain that LBD affects also controls other bodily functions. Please hang in there! Frank knows you are there and that you love him; he is probably processing what you are saying and doing when he is in a Lewy episode. You are so important to him.
Joan
North Las Vegas, NV

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Joan
Caregave for my dear Mom was diagnosed 2/08; passed away 4/08


Tue Oct 25, 2011 1:19 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Not eatting or drinking
Sending you a giant hug. It is so hard. Hang in there and take care of YOU 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.


Tue Oct 25, 2011 1:39 pm
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Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post Re: Not eatting or drinking
I am in the same boat, my dad has been in the hospital and has barely eaten a thing since he has been there. I keep searching for signs of hope and keep finding none. It seems that the not eating means the end is near. I keep trying to understand what he is doing, is it a protest for being in the hospital or does even understand the concept of protest anymore? Is he giving up on life? Or is it just the disease and we just let it run its course? I like everyone else just want some answers. What is some good reading material for the family? It sounds like we are facing the end soon?


Sat Dec 10, 2011 6:34 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Not eatting or drinking
I think you all might benefit from having your dad on Hospice care. They will have some reading material for 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


Sat Dec 10, 2011 6:51 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Not eatting or drinking
Terry:

I think the best reading material is this forum--if you haven't already scoured it for relevant info, do so. There is lots about the correlation between eating and drinking and the general decline and the fact that at some point the body does not need or want nutrition and it may even be counterproductive to an easy death.


Sat Dec 10, 2011 6:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Not eatting or drinking
Is your dad CHOOSING to not eat, or is he physically unable to feed himself but might actually WANT to eat?
If he is consciously choosing, or if he is semi-conscious that is very different from his being hungry but can't get the food to his mouth and doesn't ask for help. I told my dad's CGs to only feed him if he really wanted food and not to force it on him if he didn't want it. His last 5 or 6 mo. he became increasingly uninterested in food, until the day he died where he ate a large breakfast and lunch! (that is VERY out of the ordinary from most people's last day, I believe)
It is very hard to not try to feed or give drinks to your LO, but if they are truly in their final days, it is best for their body to not have food, drink or most meds. Hospice can be of great help to you at this point. 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.


Sat Dec 10, 2011 7:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Not eatting or drinking
Terry,

I don't know any dementia patients capable of launching the sophisticated protest you are describing.

Also, in our local support group (those dealing with the four atypical parkinsonism disorders), while many, many people decide on their own to stop eating/drinking, I've never known anyone with more than mild dementia be able to make this decision.

My wild guess is that your dad isn't eating because he doesn't feel hungry and is starting to shut down. There's a good albeit slim booklet that hospice provides called "Gone From My Sight." Several months ago, the author of the booklet posted a video of an hour-long presentation on "Gone From My Sight." You can find a link to the video and my notes from the video here (might take 20 minutes to read the notes):

http://forum.psp.org/viewtopic.php?t=8800

Robin


Sat Dec 10, 2011 7:37 pm
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