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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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On the subject of hospice, many people believe that a person needs to be at death's door in order to recieve their services and that just isn't true, they have to have an illness that results in end of life and declining with with a surgery, infection, losing weight things of that sort.they just re-evaluate every 6 months and if there should be significant improvement they may no be eligible, that doesn't happen often because this disease is of of the decling nature, I highly recommend speaking with the doctor and having hospice ordered and they come out for eval and a determination is made for services. I had them for 8 months and they were such a blessing!

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Irene Selak


Thu Feb 25, 2010 10:55 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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I hadn't actually thought about hospice yet, but I will attempt to talk to the doctor, When I call the clinic, I generally end up with a nurse returning my call, I might just make an appointment to see him, and ask him what he thinks about hospice at this time. I don't think he knows much more about Lewy Body than I do. I was amazed when my husband's cardiologist had never heard of Lewy Body.

Those of you who have been down this road, do you think he is ready for hospice, that the end is that close? I have so many mixed emotions about this, he has no quality of life really, but I don't want him to die, but I don't want him to continue to have to live the way he is either. One minute I think that it would be best if he would pass, and then he will say or do something which makes me feel that he is still with us at least some of the time.

I never thought I would be in the position I am in, years ago we bought long term care insurance, and I often wondered if we were just wasting our money, friends of our bought some at the same time, and never spent a day in a nursing home, or long term care, and I really thought we would be the same. Life sometimes gives us a curve ball.


Fri Feb 26, 2010 12:27 am
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Mary,

Like you I wonder about the time for hospice. How can we know how close we are to the end?

I am taking care of my husband at home, and see how much he has declined in the past few months, partly because he has had a series of UTI's, just now finishing a 4th round of antibiotics. Plus despite the pureed food and thickened drinks, he has difficulty swallowing, and suffers from spasms of the esophagus. He has taken to howling and moaning, clenching his teeth, and other demented behaviors. He no longer can stand on his own, and can walk a few steps, e.g. to the toilet, only if strongly supported, On the other hand, he can sometimes say some surprising things, including names of people from 50 years ago. Plus, what really matters to me, he loves to be held and comforted.

I know hospice care is also about comfort, but it means being ready to accept the end, and I find myself reluctant to be the one to make that call. I am working on it, though. Maybe we can help one another...

Best wishes,
Doris

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Bay Area, CA


Fri Feb 26, 2010 1:52 am
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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I am going to request an appointment with his primary care doctor, and see what he has to say, about when is the right time for Hospice. I don't know if he knows any more about Lewy Body than I do, I don't know if he has had any other patients with Lewy Body.

I believe that my husband would truly love to be held and comforted, but being in the nursing home makes that difficult. I do what I can, but it is not like it would be if I could have him home. Last night he asked me if I didn't like him any more. I was trying to get his arm unstuck between his body and the side of the wheel chair.

He can not walk, or stand alone. The nursing home staff is really good to him, one of the benefits of a small nursing home, in a small town, where you have lived for 50 plus years. I will up date this after I talk to his doctor, and let every one know what his take on Hospice is.

Take care everyone

Mary


Fri Feb 26, 2010 10:24 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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I don't think any of us here know for sure if it is time for hospice, your doing the right thing discussing it with his doctor, I didn't think we were ready for hospice either.

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Irene Selak


Fri Feb 26, 2010 6:21 pm
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