Does anyone know how long they will keep you on hopsice? I had visiting nurses coming to see Wayne and then the physical therapist and others. Finally, one day they said he couldn't understand commands and he should be in hospice. That was in July, 2010. Well, since then he has lost weight and sleeps 14 - 18 hours a day however, his vital signs are still "normal" and I just wondered of they might "unenroll" him.

The hospice organization has been wonderful and provide all the diapers and meds so it really is a blessing. They are a lot of support to me too so I really will be sad if they quit.

He could have normal vital signs right up to the end. Means nothing so far as Hospice goes. Seems like he should have already been due for recertification if he was admitted in July 2010. They have to be re-evaluated after six months.

I have heard of people being on hospice for as much as 2 years, but I do believe they re-evaluate every 6 mo. in most hospice organizations. It probably varies from one hospice to another, too. My dad's vital signs were pretty stable till the end too, except he had a fever on and off the last month or so. But his BP and heart rate stayed about the same.
Lynn

People must continue to decline in order to be on hospice. So, if your LO is stable, he might be un-enrolled. But he could go back on hospice if he starts to decline (eg, sleeps more than 20 hours a day, loses weight, etc.).

If your LO ever goes to a hospice house, they can really vary re: length of stay, etc. The 2 nearest where my dad was - one gave you 60 days, and if you were still alive you had to move out on day 61. They would not take a person with any type of dementia. The other one, about 20 mi. from there was extremely flexible, very accomodating, happy to take a person with dementia, and the 60-day rule wasn't an issue for them. Funny how the same parent org. could have such different philosophies and procedures..... You may need to know this at some point, and it could be worth checking out sooner rather than later since we never know how fast our LOs declines will be. All the best, Lynn

Some are for-profit, some are non-profit. IMHO, the non-profits are better.

I doubt if there has been weigh loss they will take him off of their care! Any that I know of re-evaluates every 6 months and yes I know of families that have used it over 2 yrs also! As mentioned even if they did they will still be there when he needs it again.

Thank you for your responses. This hospice group evaluated Wayne twice at 90 days and now they will be evaluating every 60 days. I know it is so hard to determine the progress of this disease, that was why I was surprised when they admitted him into hospice. Now I am spoiled as they take such good care of us. I don't know if it is non-profit or for profit.

Jeanie

We are going to go through the evaluation for hospice today. The last time she was turned down was about 9 months ago. Now I think she will qualify. She's still mobile, but much less so. The almost-weekly falls have led to compression fractures and pain. I need help with the decisions. In addition to her increasing cognitive problems and parkinsonism, I think she has skin cancer on her face that we're not treating and her pacemaker may be malfunctioning and we're not going to have surgery to treat that either. The easy pain medications, like tylenol, don't cut the pain anymore and we've been going up the ladder of pain medications but it is extremely difficult to take her to the dr. anymore. The most amazing thing is that she is still not incontinent. I guess this is an update to those of you who know us. I chose the color of my clothes today to what looks best with crying. Wish us luck. Annie

I'm sure Derek would qualify--he probably would have qualified a year ago--but I don't believe he is within six months of death so we're saving that option until we need it. It's such an unpredictable disease, isn't it?

Annie - my thoughts are with you all as your mom is approaching the end. I applaud your philosophy in letting nature take its course at this point and not intervening with the inevitable, given your mom's circumstances. I know it's really hard, BTDT, but you are doing what is in her best interest IMHO. I hope she "passes" hospice this time. It is so frustrating when these criteria have become so much more difficult. I think my dad flunked twice before finally receiving hospice services. You have devoted so much of your time and I know your husband has too; your mom would be so proud and thankful of all you have done. Please keep us posted. Lynn

Annie,
Hope all goes well today. What are crying colors?
Robin

There is no limit to hospice as long as the patient keeps requalifying, and even if he gets better and doesn't, he can start over again when another downturn occurs.

I thought it premature when it was suggested for my husband since he was being physically taken care of in the ALF. But everyone told me there was no down side so I did it. And as it happens, he died after 2 months from pneumonia I decided not to treat. One nurse told me that "pneumonia is the dementia patient's friend." I am so glad I listened because he would have come back at a lower level with no quality of life and might not have had the chance for another easy exit.

There were 2 criteria--one a matter of weight loss under which he qualified, and the other a list of ADLs he couldn't manage. The list had to include all the listed ADLs and the last one was something stupid about not being able to say more than 5 words that made sense.

So far, so good. My husband and I met with the hospice nurse and had a heart-to-heart conversation. I've signed papers and was told that she qualifies but I don't know if that is the final word. However, when the hospice nurse went to interview my Mom, she was lying in bed this time rather than marching around with her walker, which she was the last time she was evaluated (a year ago). I should know today. I hope so, because it sounds like I'll have lots of support and may even be able to give up some of the responsibilities I've taken on. I mentioned Lewy Body Dementia and she actually knew what I was talking about!

Robin, I chose to wear blue because I thought my first choice, coral, would show up my pink eyes and nose. I'm just a mess when I cry...

Annie,
You made it through the heart-to-heart! Congratulations! I hope your mom and your family receive all the benefits you are envisioning with hospice. It can be wonderful for many (not all). I should've guessed blue for "feeling blue."
Robin