I found this to be very, very interesting. Although things have changed somewhat regarding knowledge of, and access to hospice services this article from 2003 exemplifies a basis for the prevailing thoughts people have about "Hospice" even today.
This article is so very true. My husband's Kaiser doctor has referred him two times to Kaiser Hospice. Hospice states he does not meet their guidelines- he can smile when asked, hold his head up and has not lost weight, AND that Alzheimers is not really a terminal disease. I feed, shower,shave,dress, toilet my husband as he has no idea how to by himself, vision almost gone now, has word salad, unable to find or sit in a chair without extreme assist, cannot find any room in the house- and he does not meet their guidelines. My husband's MD is furious. Per, Kaiser's Geriatric Dept., my husband is mid-stage 6. The general public has such a misconception of this treacherous disease. I told Hospice, that as a nurse myself, I had a Hospice resident who was able to smile, walk, run, smoke, beg for more drugs, lie to get more drugs, talk extremely well, had ruined her liver by being an addict- and my totally dependant husband did not meet the criteria- how could this be?
Jeezers ckkgram. Sounds the same as the Social Security Disability. My BIL has been fighting over 20 years for it, has lupus, thyroid disease, on mega steroid drugs, heart and lung issues, you name it. Finally got it recently after they've lost everything and lived destitute for years. But his alcoholic drug addicted younger brother who still parties, courtesy of the tax payers, has had SSD for years and years.
Re: hospice.....are there other hospices in your area that you can have do another assessment? Not every hospice is the same. I'm just about to enter the training in qualifications for services, and communicating with insurance companies. One thing they are really pressing is that documentation is the "be all-end all" for a persons certification. One written mis-step can get a person dropped from service, or disqualified from getting service in the first place.
From what you have written your husband fits several criteria to be accepted. It is possible that if he has been "plateaued" for some time they are considering him not to be in a "decline." I know its BULL, but I'd keep pressing the issue. Call them often to do assessments. Make them sick of having to keep coming back. You should have the right to request assessment on your own, and if they find you qualify they get the order from the doc for service. Demand that they give you in writing, the criteria that their agency uses. That way you are armed with their very own policies to use against any bogus disqualifications.
Sounds exactly like Kaiser - they don't want to pay whenever possible. My sister has them as her secondary - Medicare pays first and they should pay the rest. Seems like they fight her every time she goes.
ckkgram, I am finding that Hospice is not very kind when certifying an Alzheimer patient and the rules are again changing for the worse to be phased in by 2013. I went through this with my husband, we had Hospice for 13 months and they pulled out due to the fact that he has no other physical condition, just that the brain is deteriorating and that he is totally helpless. The Alzheimer patient gets the bad end of the stick no matter what or at least it seems that way to me.
As for as I was concerned I was glad to see them go, I have now gotten my husband approved and have had it delivered, the Power Wheel Chair that we so desperately needed, I have now purchased a mobility mini van with the drop down floor so that I can get him to needed Doctor appointments and I doubt that I will ever call Hospice again unless we are very near the end. It was not a good experience for us at all.
New Realm, I am so happy you are with us and have become a Hospice worker. You will be such a help to all of us. Please stay with us, keep us informed, we need you more than you know, but yes I guess you do know how much as you have walked in our shoes two fold and over. It takes a person like that to understand the needs of an Alzheimer patient.
All I can say about Hospice is that according to the information I have received at various conferences, and through people I know who have used them - they are different in every State. They are excellent here in Florida (yeah, I know - we have so many old, ill, and dementia people, that we have given them lot of experience ). But honestly, when Hospice is called in, everything needed is procured immediately, and they are there regularly, either in the home or a facility. If you are having trouble getting what you need in a facility, they tear through the red tape and get it.
ckkgram, move to Arkansas!!! Your husband sounds like he is at the same place mine is, but he doesn't smile but once in a blue moon, and doesn't acknowledge the presence of others besides me unless they come right in front of him and start talking to him, and he will raise his hand to shake hands with them. He is in stage 7, and I had no trouble with getting hospice at all! After 30 mintues of observation and questions to my grandson and me, they approved him for hospice.
Even my insurance company has called to see what they can do and to ask me if I am satisfied with the hospice care!
I'm so sorry that the others of you are having the difficulties that you are having. They have been great to us. It sounds like I was very fortunate.
Jane, I'm so sorry you had problems as well. I remember Fran had difficulties and couldn't get hospice until the the last week for her husband! I don't know what the criteria are in different states, but obviously, the doctors and nurses have a different checklist.
you are in California, right? I know from experience that Kaiser there (in most cases I've heard) is like being given a sentence. It is what my BIL has. He's been sent out of town for specialized tests, by Kaiser, only to have Kaiser refuse payment because he went out of town. Ugh!
I know a nurse in Orange County who herself has a Mom with dementia, lives in a facility, and still has had hospice care on and off. When she stabilizes she has been de-certified only to become re-certified shortly after. My understanding is that most hospices have a set of criteria, and if a loved ones fits three of them they qualify. I will ask her for some advice.
I had a good experience with Hospice care in WV for my mother last year. I will use the same office when DH needs them. Sorry some of you have had problems with them. I guess they are like everything else - there are good and bad in everything.