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 Hospice 
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Re: Hospice
End of life issues are so intensely emotional. My husband was in hospice for only a week. The first organization that came out to do an eval upset me a great deal, Charlie didn't seem to care one way or the other. After they left, I thought about the situation for a short time and called and dismissed them. I called another local organization who came out early the next morning and "the fit" was good. I don't know whether my reaction was simply to the fact that Charlie was dying and I was just angry about that, or not. Anyway, I am glad that I followed my gut feelings and made the switch at the beginning. I felt that even if the problem was me that I had enough to deal with without having hospice people that I didn't like. The second organization's staff was wonderful and I always got an immediate response.

My heart and prayers go out to you, Lucille.

Joy


Thu Jul 22, 2010 1:32 pm
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Joined: Wed Jun 09, 2010 4:53 pm
Posts: 42
Location: Davis, CA
Post Re: Hospice
Pat, I couldn't agree more. Our family was always there and we were like a thorn in their side. My brother complained to the social worker and all the aides who had previously been nice to us turned mean. I could only imagine what they were doing to dad when we weren't there. They kept threatening to throw him out, too, because he wandered. We would turn the call light on when he needed help and their response was incredibly slow. Several times, we found them all congregated in the break room, instead of looking after people. We have not decided what to do about it. With dad gone, it's tempting to just let it go, but then you think about all the others who will continue to suffer there.


Thu Jul 22, 2010 2:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Hospice
Wow - what stories people have! Having to share a room in a SNF is one of my worst nightmares, because you have no control over who your LO will be rooming with, what condition the person is in, etc. What a nightmare, Pat.
Joy - it's a good thing you live somewhere where you had a choice, as many people have no access to hospice services, or there is only one from which to "choose."
Our meeting with the hospice nurse went well this morning, thank goodness, but she can't understand how my dad has been able to remain in an ALF since he is so bad off. She is trying to get someone to determine if he is within 60 days of dying so she can move him to the hospice respite house near his ALF.
When my sister was leaving his room today he tried to get himself out of his wheelchair because he was "waiting too long" for the CGs to get him into his bed. She told him to please not do that and he tried to kick her and hit her with all 4 limbs flailing. He kept inching himself forward and she ran out of the room for help. She and the CGs just barely got back in time to catch him before he landed on the floor. They put him in bed, my sister was saying goodbye to him and he tried kicking and hitting her again. I sure hope they get his meds changed FAST. I've been asking for 2 weeks that they do something to calm his anger and frustration. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 22, 2010 2:21 pm
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Joined: Wed Dec 12, 2007 4:53 pm
Posts: 88
Location: Melbourne Beach, FL
Post Re: Hospice
Oh, Lynn, my heart goes out to you. I can only imagine how frustrating it must be to have so little control. I admire how well you handle your situation. It is unbeiievably stressful to advocate when you have to also be careful that your actions do not bring negative consequences to your LO. Surely, God must have a special hell reserved for professionals that mistreat sick people either overtly or by failure to respond.

I pray the doctor will indicate that your dad is within 60 days of dying so that you can get him transferred to the hospice facility. Doctors can't know with any certainty how long a patient may live, so why not do what is needed to place them where they receive the best care. We were lucky that Charlie's doctor never hesitated to take action that would benefit him. And, yes, it was a blessing to have a choice, I hadn't thought about how fortunate it was. The heartache of loss isn't compounded by anger or frustration with inadequate professionals and I am truly grateful for that.

Prayers, love and hugs, Joy


Thu Jul 22, 2010 6:49 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Re: Hospice
Lucille,
So thankful for you that your LO qualified for hospice. Fortunately for us, our primary care physician was the referring dr as our neurologist is in another state (I moved my mom in with me a year and a half ago). All the meds the primary care had mom on were acceptable with hospice although we do have to pay for some of them ourselves. Yes, they have changed meds as needed, such as adding ambien and seroquel, but they were needed. Thankfully the hospice dr comes to our home monthly and a nurse weekly. I can't say enough good about our hospice (nonprofit) staff and the way it's run. Today was "recertification" day as mom has been a hospice patient for one year. Unfortunately, she has declined considerably in the past 2 weeks, sleeping 18-20 hrs a day, eating one meal, losing weight, small urine output, and is less communicative. The nurse thinks her time is drawing to a close and unless things change, we will keep her at home until the end. For all of you that shared your "horror" stories, my heart hurts for you. With all the duress you're under, that's the last thing you needed.


Thu Jul 22, 2010 8:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Hospice
Thanks so much Joy. I now have his new primary care, a CNP, telling me he doesn't have anger issues this afternoon. I am so mad I could spit nails. I just spent about 2 hr. writing and rewriting a letter to his former CNP (this woman's boss) explaining all the anger issues that have gotten worse over the last 11 months and requesting a new health care provider for my dad. I need someone I can trust and respect, and this new person he was recently assigned is condescending, has little to no knowledge of what is really going on with my dad and is just a b**** when I talk with her. This is all I need with everything else happening. I can't believe how awful this woman is to deal with and now I have to try to get someone else for his care.
Have any of you ever heard of a family care practice that is only CNPs, with a "consulting doctor"? Supposedly this is the only game in town where they go to the ALF or SNF to see patients, so I am up against a wall. My dad is not transportable by car and the ALF only transports people on Thurs. so I am up you-know-what-creek if he needs to see a "doctor". She says it is impossible for her to contact us before she sees him. She went to see my dad 2 days ago and told him "your family doesn't want you to go home again. They want you to spend your remaining days in this ALF". Why would someone do something like that? She's the one who told me that's what she said!

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 22, 2010 8:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
Lynn, she sounds very tactless to me. There are so many ways she could have said something to make the point, such as, : 'Your family is very sorry that they are unable to give you the care you need at home but they are in close contact with the staff here to ensure you are well taken care of', or something like that.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 22, 2010 9:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Hospice
There are a lot of things she could have said, and I don't even know why she went there! Your idea would have been a lot better, but I just don't get why she had that conversation at all with him. I think she is clueless about her communications with people.
What would have been more appropriate would have been "I've been checking your medical situation and want to talk with you about the state of your health. This is what's going on ...... " And, if she had let one of us know, either my sister, one of his best friends, or I could have been there to support him.
I hope I can get her switched out by Monday.

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 22, 2010 9:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hospice
I guess I assumed he had told her he wanted to go home, or go home to die. No way of your knowing how it transpired, though.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Jul 22, 2010 9:50 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Hospice
From what she told me, she just walked in and announced that his family didn't want him to go home, out of the blue. You're right Pat, no way of knowing what actually did transpire. And who knows if or what he remembered from the conversation anyway. He may have no idea it took place, and then again he may remember it verbatim. Who knows? I just think she is a tactless person who doesn't respect her patients or their family members. Too bad her boss isn't the person still seeing him. He really liked her and she doesn't have the personality of this CNP. Grrrrrrrrrrr :cry:

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 22, 2010 10:30 pm
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: Hospice
Hello, I have been reading for months but have never posted. Thank you all for sharing your hard won wisdom. My 76 year old father has LBD, having shown symptoms for 5 years, with executive dysfunction, parkinsonism, hallucinations, and delusions leading the way from a very early date. He can usually stand from sitting, he walks independently but with great difficulty, his gait is very unstable, he speaks well but not always coherently and he feeds himself. He has relatively little memory involvement but evident psychiatric symptoms and is incontinent. He is lost but very sociable when he is not in the grips of a hallucination or delusion. My question is: has Medicare elaborated a set of hospice admission criteria for LBD which do better than Alzheimer's hospice admission criteria in defining nearness to death (for regulatory purposes only) for LBD sufferers? My father's doctor enthusiastically made a hospice referral not long ago, but as I interview different hospice organizations, it is not clear what criteria will apply to determine whether they can admit my father. I am interviewing various hospice organizations right now, but I do not wish to subject him to repeated admission evaluations in order to have an opinion on Medicare eligibility, and short of having them "take a look at him," I can't seem to get an authoritative answer on the issue of Medicare guidelines for LBD hospice admission.


Fri Aug 06, 2010 10:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3370
Location: Vermont
Post Re: Hospice
What a great question, Sue. My dad "failed" hospice twice in April, and then without any knowledge that my dad was being evaluated again, I got a call a couple of weeks ago saying he'd been admitted into hospice. Although Medicare sets criteria, I think they are interpretted/applied in different ways in different places. The only difference in my dad (from a criterion standpoint) is that when they eval. him a couple of weeks ago he could no longer feed himself or hold a kids' sippy cup. Supposedly it also had to do with weight loss, however, he hasn't lost any weight since April, so who knows?
The most definite thing I can say about the hospice criteria is that "it varies". There is nothing about this illness or my dad's care that is black and white. The whole thing has been very grey, no matter what specific topic we're looking at. Not very helpful. :roll: Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Aug 06, 2010 11:09 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hospice
Medicare hospice criteria were developed with terminal diagnoses such as cancer in mind. They were NOT developed for dementia patients in mind. There is certainly no LBD-specific evaluation criteria but LBDers and ADers often meet the standard criteria anyway.


Sat Aug 07, 2010 12:41 am
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Joined: Fri Aug 06, 2010 10:07 pm
Posts: 19
Location: Dallas, TX
Post Re: Hospice
Last night, I found some more specific criteria on the internet in a power point presentation written by a medical director at a prominent national hospice, it describes the admission criteria for "Cerebral Degeneration, Dementia, or Alzheimer's" and for Parkinson's Disease, they are fairly consistent and might be a starting point. For "Cerebral Degeneration", it is a Functional Assessment Stage (FAST) score of 7C, or alternatively, a Palliative Performance Scale (PPS Version 2) score of 10, 20, 30, or 40, or, alternatively, if the patient has certain co-morbid conditions, including dysphagia , a FAST score of 7A or B seems to suffice. I think that the presence of other symptoms, including psychosis, may also be persuasive. The presentation is very detailed, if you are interested it is at

http://www.powershow.com/view/141e1-ZTQ ... TIFICATION


Sat Aug 07, 2010 10:54 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Hospice
Daughter Sue.

Thank you for the wonderful post related to hospice care criteria. It's really complete. I had been on the medicare site but that wasn't nearly as descriptive as the one you posted. My LO doesn't meet the criteria. He's still capable of dressing himself in simple clothes and he is able to navigate...if poorly. And while he has lost weight..he's 5'10", used to be 218#, he's now 149# but that doesn't meet the BMI.

I knew where he was, and knew he wasn't ready for hospice, but now I know where he is on their scales. Good research, my friend.

Nan


Sat Aug 07, 2010 2:53 pm
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