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 New to this forum- Dad has advanced stages of LBD 
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Joined: Mon Sep 01, 2008 4:19 pm
Posts: 1
Post New to this forum- Dad has advanced stages of LBD
My father has suffered from LBD for 10 years now. It first started as PD and then a couple of years later they added Alzheimer's. In 2005 he was properly diagnosed with LBD.
After having him at home until 2006, we had to make the most difficult decision to put him in a nursing home. He was geting out of the house late at night, falling, becoming aggressive towards my mom and caregivers.. the list goes on. Since I am his Power of Health Care, it was up to me to make the decision and put it off as long as we could.
He is now I believe in his final stages. He does not speak, or comprehend any basic instruction and most recently has lost 6 lbs. in 3 weeks (he weighed 110 and could not afford this). He is not eating more than 25-50% of his pureed diet and his Speech therapist said it's a matter of time before he gets aspiration pneumonia (this would be his 3rd time).
I do not want him to die in the nursing home, but I am so afraid I could not care for him right at home and I could not live with the fact that I had anything to do to cause his death. My mom is in a wheelchair and can not help. Hospice (he's receiving both nursing and hospice care at the nursing home right now) said, if I take him home, he will no longer be fed, as hospice does not do this and my dad has a very specialized nutritional puree diet.
Has anyone had to make this decision and when did you know?


Mon Sep 08, 2008 12:43 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Is there any hospice house in your area where you could take him? You may have to change hospice organizations to accomplish this...but what's wrong with that?

You could stop feeding him, and take him home to die, with hospice's help. I know many who have faced this situation and they did not want to be the ones to stop providing nutrition or hydration. It's obviously much better if your father can make that decision actively (by not accepting any more food/water) or passively (by falling into a coma or sleeping all the time).

It sounds like he is getting good care at the nursing home. If he's not aware of where he is (and it sounds like he may not be), then I'd just accept the nursing home as the place where he will die, and make it the best passing you can. It's a lousy situation, where ever you are. I hope you are getting some support from hospice yourself and for your mother too.

If your father wanted to donate his brain tissue for medical research, or if you decide that you want to do this for the benefit of blood relatives (to learn the diagnosis) and for the benefit of those in the future (who need a treatment and cure found), please make the arrangements right away.

I'm sorry for the agony you are going through.

My thoughts are with you,

You might post this in another (sub-)forum, where you could possibly receive more replies. This is Introductions.

Mon Sep 08, 2008 3:19 am
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