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 refusing all care 
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Joined: Mon Mar 30, 2009 10:53 pm
Posts: 1
Post refusing all care
My mother diaganosed with LBD 1 year ago, has been in a nursing home for the past year, has a horrific bedsore, was moved to LifeCare, a wound care hospital, she is still refusing all care and medication. Help......what do we do with her?

Mon Nov 02, 2009 2:33 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Does your mother have a living will or advance care directive, indicating her wishes in writing? Presumably she had to fill out a POLST form or similar form when she moved into the first nursing home.

I suggest you have your mother assessed by a geriatric psychiatrist to determine if she's mentally competent to make her own decisions. If she is, treat her as she wants. If she is not, treat her according to her written wishes.

Mon Nov 02, 2009 3:16 pm

Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
As gently as I can, might I suggest she really wants to die? Between the LBD diagnosis and the bed sore discomfort and all the fuss, is this her way -- consciously or consciously -- of simply choosing to not drag this out? Knowing her as well as you do, you might have a better sense of whether this might be part of what is going on.

Renata (and Jerome-in-Heaven)

Tue Nov 03, 2009 9:53 pm

Joined: Tue Dec 08, 2009 3:01 pm
Posts: 2
Post Refusing meds for LBD
thank you all for your informative, but heart wrenching posts.
My mother, 82 has LBD. She lives overseas and my father, 79 is her main caregiver.
After having tried Dopamine and Exelon, she stopped meds related to LBD.
She thinks that meds will prolong her life. It didn't really help and there were undesirable side-effects.
Meanwhile she is taking meds for her low blood pressure.
My father has a pill crusher.
I asked her PCP to prescribe Seroquel, he refused because he is a naturopath leaning doc and doesn't know this medication.
My mother is not being supervised by a neurologist because she refuses treatment.
I will take her to a neurologist in January anyway, but don't really hope it will change her decision.
So, we are getting the raw deal, hallucinations etc.
Needless to say, it is a rough deal.
Please do not tell me what meds would help. Because of the above reasons.
Her Naturopath gave her Vita D and some herb. It does not really help.
Any body else has experiences with a loved one suffering from LBD refusing treatment?
C. :(

Tue Dec 08, 2009 4:15 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Raw deal
Dear C. Sometimes it seems that we are our own worst enemies. There is help for your mother... A cure? No. However by finding doctors who will follow the guidelines set here by the Dr Boeve plan she [and you ] can have more pleasureable days together. Maybe the first place to begin is with your father, the caregiver. Convince him and perhaps your mother will realize she can be better than she is now. My daughter had to convonce me that Mr B. could not make those decisions... You tell us not to suggest meds. C., you can't ask a question and expect help if you tie our hands. We know you are hurting. This LBD is large enought to spread hurt to the whole family, you, your dad, and your mother. Not facing what can be done will only prolong the misery. Her life span will be the same whether she has medications or not so why not have her days on earth as pleasant as possible.

Let us know after your January visit. I hope you will be strong enough to help them with truths that you will find on this forum.


"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Wed Dec 09, 2009 3:10 pm

Joined: Tue Dec 08, 2009 3:01 pm
Posts: 2
Post Mother refusing treatment
I would welcome people sharing their experience with a loved one's suffering from LBD who refuses treatment.
It goes without saying that treatment would probably be helpful.
The question is: Is it a good idea to force meds onto my mother, against her will? What about if there are going to be side-effects? What am I going to tell her?
This is a deep ethical question.
The matter is complicated by the fact that my father is her caregiver and he does not want to con his wife of 55+ years.
I am a long distance caregiver.

Wed Dec 09, 2009 4:05 pm

Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
Is it right to force meds on your mother? You'd think that elicit a yes or no answer, but truly it depends -- on your mother's mental capacity to make a decision for herself and on what you mean by force. Don't forget that people can be declared incompetent so that they get the treatment they need -- if, for example, they're a threat to themselves or others, even though after treatment they may be able to resume making their own decisions. As for force, it's not always necessary. While I would not pry open my mother's mouth and force pills down her throat, I have no qualms about crushing pills and hiding them in chocolate syrup to get her to take them.

I know these are not easy decisions for you, but do keep in mind that LBD eventually robs people of the ability to reason logically. We have no choice but to help them.


Wed Dec 09, 2009 8:22 pm

Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
a few things you might try- we've used and seemed to help a bit -fish oil, lethicin, ginko, vitamin E- we had some improvements with these early on but they would do no harm to try them and her doctor may be willing
My Mother and I have agreed when she is ready and tells me no more meds I will honor her request. We have discussed (and I remind her) what happens when she decides to quit them. As hard as it is to deal with these issues it is their choice. -depending on her cognitive level or your Dad may know her wishes.
good luck- and keep reading here- there is much that you can learn. please share how it goes with your Mom.I'm caring for mine and it is painful to watch
take care


Sun Dec 13, 2009 10:23 am
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