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 Facing the (slow) end 
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Facing the (slow) end
Thanks for your reply. I will definitely look into this. I had no idea. We simply want to keep her as comfortable as possible until her natural demise.

I truly appreciate all of the replies and the care and knowledge this forum has shared.

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Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Fri May 17, 2013 12:44 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Facing the (slow) end
Not a problem, happy to help. We are all on a pretty steep learning curve with this disease. And the forum is a wonderful resource!

Julianne


Fri May 17, 2013 2:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3339
Location: Vermont
Post Re: Facing the (slow) end
Hi Dale - when my dad was in his last months and was finally given hospice care, hospice gave me a very good pamphlet about "end of life" stages and characteristics. One of the things I read was that at the end of life the body is using very few calories and nutrients. It is more difficult on the body to process foods, drink & meds, therefore hospice and other knowing medical professionals recommend NOT forcing anything into a person who is in the final stages. If she is not wanting to eat, it is probably best to listen to the folks who know.

Some SNF, ALF, and hospital staff try to force people to eat at this stage, and frankly, I wonder why. It is against the process of nature shutting down the body and it can be very annoying for the patient. I have no way of proving this, but I believe that if the ALF hadn't insisted on giving my dad Ensure in his final months, he may not have lived as long and therefore been spared weeks or months of awful pain and the truly horrible quality of life he had. I asked them not to force feed him many times.

Perhaps your LO isn't in her final weeks or days, but if she is not very mobile and is just sitting and lying down, she is not burning many calories either.

Big hug, this is so hard on everyone, 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.


Fri May 17, 2013 4:58 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Facing the (slow) end
This is from youtube video for anyone interested ion seeing .

http://www.youtube.com/watch?v=PPx-qpos57g

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Irene Selak


Fri May 17, 2013 7:41 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Facing the (slow) end
Hi Dale,
My mother is approaching that stage, too. She eats very little, mostly soft foods, and rarely feeds herself. She spelled out her preferences very clearly in her advanced directive, and we are all in agreement. So there will be no artificial feeding of any sort - no tubes, no IV. As the video and booklets say, she will likely eat and then drink less and less, but out of her own preference and comfort as things shut down. As little as she eats - typically just 2 or 3 spoonfuls of soft food, half a glass of juice or milk, and a tiny scoop of ice cream at dinner - she still only lost 5 lb last month.

All that being said, she is quite variable from day to day. Last Sunday they had a special meal for Mother's Day, and I fed her some tiny bites of roast beef and asparagus with hollandaise. To my surprise, she ate quite heartily (for her) and said she enjoyed it and it tasted good. She also ate some solid food - maybe part of a sweet roll? - at breakfast and fed herself. And tonight, she fed herself a dish of ice cream (usually I or one of the nurses will feed her, and ice cream is the one food she eats reliably, though in small servings.) After her ice cream, I pitted a cherry fresh picked from our lovely black cherry tree, and she enjoyed it, and then ate about 2 dozen more!

But it's very much up and down. I just try to offer food I think might appeal, maintain a philosophical attitude, and keep the nurses from forcing her to eat when she does not want to. (She commented the other day, after watching a nurse insisting that one other lady take her pill, in a little spoonful of applesauce, that she did not want anyone to make her eat. I explained that it was just the pills they wanted the lady to eat, and she was more or less reassured.)

Seems to me the main thing is to be very sensitive to the cues, and offer, maybe even coax a little if it is something that might taste especially good, but respect her wish to stop. I did coax her to try the cherries but that turned out to be a treat.

Take care, and much warm sympathy - we are all in various stages of figuring it out, with much help and kind support here!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Sat May 18, 2013 12:30 am
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Joined: Tue Feb 06, 2007 8:35 pm
Posts: 51
Location: Toronto, Canada
Post Re: Facing the (slow) end
Thank you everyone for your replies. You have been more helpful and supportive than you know. I really knew very little about end stage of life. I love her so much and I feel so helpless. I will continue to hold her in my heart and pray for her and her wonderful caregivers. They really are fabulous! She is clean and has no decubitus ulcers (special wheelchair with ROHO cushion and head supports on side), so I am grateful for that. Music therapy on certain days and other activities that aides wheel her to so she can watch and listen.

Here in Toronto in many facilities, the care is not so good. People in mom's situation often get sent to Emerg with foot sores, etc. So, hats off to the New Brunswick Shannex facility.

I don't know what I'd do without this forum.

Blessings,

_________________
Dale
[My dear, Mom, Beatrice, (born in 1929) was diagnosed with LBD in Dec 2006. She passed away peacefully on July 12, 2013 at Embassy Hall, Shannex, Quispamsis, N.B.]


Sat May 18, 2013 11:15 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Facing the (slow) end
I'm so glad to hear your mother is receiving great care at the facility.

_________________
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 May 18, 2013 5:55 pm
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