I am new to your site. I am wondering when you can use Hospice - Is it only for bedridden Alzheimer's or do they offer any respite etc. - my husband is in about 6 stage, can walk still, needs bathing help, dressing and is incontinent of urine , at times. Cannot be left alone!
Welcome to my website. I am sure you will find the support and information you are looking for.
The universal statement about Hospice is - "I'm sorry I waited so long." Hospice is so much more than people think, and can be used much earlier than you think. The criteria is that the person have a terminal illness, is not getting better, and has a prognosis of less than a year or two to live. They will come to your house, assess the situation, and get you everything you need PRONTO! They reassess periodically. If, for example, your husband is doing better after a year, they may withdraw, but can be recalled at any time.
Call them - they are wonderful. If they feel they are not needed in your situation, they will tell you, but as I said, they can always be called back to reassess.
Asa-I don't know what I would do without Hospice. My husband is in a dementia alf. They do not provide skilled care. Someone from Hospice sees my husband every day. It may be the MD, RN. Cna, chaplain or social worker. The facility knows they are watching and it keeps them on their toes. Hospice also pays for incontinent care and some medications. They contact me often and we share decision making. As Joan says-call them
Hospice was recently called in for my husband, it is true Hospice is quite different than in years past. With the Alzheimer or Dementia diagnosis the criteria is that the patient must be in stage 7 of the disease. My husband has to have assistance with eating, cannot bath himself, dress himself, is totally urine and bowel incontinent and cannot talk. His speech is gerbish and can only say a word or phrase now and then. Hospice criteria is that they can say no more than 6 words.
My husband can still walk but very slowly and has to have prompting. Once your husband enters stage 7 of the disease call Hospice immediately, also if there are other health indicators that do not require the stage 7 criteria as Alzheimer does, such as cancer or another terminal illness they do not have to follow the above criteria. Hospice will re-certify each 90 days for the first 6 months then each 60 days thereafter. You can use Hospice much longer than 6 months as most people think. The patient can be re-certified indefinitely. The criteria for re-certification is that the patient must show decline from the previous certification.
Last night one of the national news reported of a woman who is being charged over $3 million because she had patients who used the service for over 6 months. Did anyone else see that? Apparently she isn't the only one running a Hospice House being back charged by Medicare. Has anyone used Hospice for over 6 months? I thought they had to recertify the patient every six months, but now it seems Medicare may be trying to avoid payment completely.
My husband is on Hospice. He is at about stage 6. Goes in and out of CHF. He is evaluated every 90 days but as time goes by the eval will be more frequent. I read the report Hospice sent to my insurance company and they staged him more severely than I would have. His status changes daily so it is a tough call. They call me often and I am a part of their team.
frand....the first time my husband was on hospice they kept him for almost 18 months...he stabilized and they couldn't recertify him after that point...it was three years after that that he got pneumonia and I called in hospice again...I was shocked when I saw what the hospice billed Medicare for a month of their services....almost $5000...whew.....
Another question - my husband is on Medicare A but not Medicare B, because I still work and have health insurance and he is covered under my health insurance. (I just discovered the total for medications for my DH for 2005-today was over $14,700.00!!!) Oh, my!
My question is can he still have Hospice when not on Medicare B?
Thank you. I've gone there, read just enough to know I need to read the whole thing, saved it and shared it with someone who I know needs the information more than I do.
As of this date Medicare pays Hospice $160.00 per day for each home care patient. No matter what services they use that are offered. That is what our Social Worker with Hospice told me.
No one mentioned seeing this segment regarding Hospice, but if you are interested I found it by going to www.CBS.com, clicking on the Evening News. It aired last night, 5/28. The article easily showed up a few minutes ago, but when I tried to email it to Joan it wouldn't send. This gist of the segment is that 11 years ago Hopsice was allowed to serve for an extended time, but that Medicare will only pay Hospice for 6 months. Sounds like our government at work, eh?
This is the article on the CBS Evening News last night that Frand was talking about: The link is to the video, but for those who don't do video, I copied the written story.
CBS) Registered nurse Bobbie Flemming drives about 1,000 miles a week around the Mississippi Delta, making dozens of house calls.
But Fleming, a hospice owner, is not out to save lives. Her goal is to help her terminally ill patients die in peace, by offering, as she says, "Just a small amount of comfort and compassion on this end-of-life journey."
But there's a problem: 11 years ago, Congress mandated that terminally-ill patients are entitled to unlimited hospice care - but Medicare only pays the hospices for six months' worth, CBS News correspondent Thalia Assuras reports.
So when the federal government realizes its been paying for people like throat cancer patient Willie Ross for well over six months, Medicare demands its money back - plus 12 percent interest.
Flemming's current bills show she owes more than $3 million.
She says whatever funds she has go to purchasing drugs, buying medical equipment and paying staff salaries. And she has no intention of denying her patients treatment.
"I'm not the one to say because you're not dead, I'm just going to dump you," said Flemming. "It's not in me to say that."
Medicare declined to comment to CBS News, citing a lawsuit on the issue. But it has offered Flemming a choice - either pay up or declare bankruptcy.
"I've always done the right thing about end-of-life care," said Flemming. "I'm going to continue to do it and someone is going to eventually hear this."
I'm not the one to say because you're not dead, I'm just going to dump you. It's not in me to say that.
Bobbie Flemming, hospice ownerFlemming recently took her case to Capitol Hill with other hospice owners, asking Congress to freeze their debts until it can come up with a way to pay for extended hospice care.
Until then, Flemming said she's not going to play God by turning away patients just because they don't die on schedule.
Hospice care focuses completely on pain management and comfort care. It typically is reserved for people who have less than six months to live. However, very few people with Alzheimer's receive hospice care, partly because it can be so difficult to predict how long a person with end-stage Alzheimer's will live.
The National Hospice and Palliative Care Organization has published guidelines to help doctors determine when hospice is appropriate for people with Alzheimer's disease.
In general, the guidelines require a severity of dementia in which the person has lost the ability to communicate in any meaningful way and can no longer walk without assistance. In addition, the guidelines require at least one dementia-related medical complication, such as:
Aspiration pneumonia Upper urinary tract infection Sepsis or other overwhelming infections Worsening bedsores Weight loss greater than 10 percent over the past six months Hospice care is usually covered by Medicare, Medicaid and private insurance. It can be provided wherever your loved one resides, including at a nursing home. If your loved one lives longer than six months after starting hospice care, the benefit can be extended. Conversely, you can choose to stop hospice care at any time.
When I first called the Hospice office to inquire if my husband might qualify, I was told by the intake person all the above had to be reached before he would qualify. Well, being the type person that I am I immediately contacted the Director of the Hospice center and very quickly got a replyl
It seems that the person I talked to was quoting me the criteria for In House Hospice and not Home Hospice, My husband did indeed qualify and when the Doctor sent in the order it very promptly happened. The Director said she would be sure this incorrect information would not be given out again.
If you do call Hospice be sure to talk to someone in authority and not just whoever.
Just had evaluation of my husband, in stage 7, but who can walk independently, eat by himself, and put on outer clothes by himself (all gotten back after Christmas, as he couldn't do the eating and dressing before by himself, and was walking very weakly and with more assistance and using wheelchair also). Has no communication skills, is totally incontinent, is on no other meds other than his AD meds, except for Atenolol for a tachacardia condition, but did not qualify for Hospice at this time, because he was not dependent enough. Apparently I am doing a good job all by myself. I was at a support meeting and there was a talk about the current uses of Hospice, especially when it comes to also helping the caregiver/family, with the promise of 5 day respite care once a month, handled totally by the hospice staff, and also help with the finances as far as Depends, etc. are concerned, and help with showering. I can't get my husband into the tub to shower him anymore, and have to totally sponge bathe him. But according to the criteria needed for hospice, he did not qualify "at this time", even with question being asked of person in charge, other than evaluator at my house. A list of things that I should look out for was given to me, and should any of them happen, I am to call them immediately. I will admit that being 16 1/2 years younger than my husband has made it easier for me, I suppose, because I am constantly told I am doing a wonderful job with him at home, and that because of that, he will most likely live a lot longer, making me crazy to think that should he be placed in a nursing home for good, he will die within a short time, and then will I be consumed with the guilt that it was my fault. I have had him in respite, and have been told this last time, that they would need something stronger to calm him (Lorazepam is what I have for him now) because of his "combativeness" which takes three people to tend to him then. I have gone to all the proper agencies for some kind of help, but so far, we don't qualify for zip "at this time". To read some of the comments here, I guess it just depends on what state or county of state, or hospice you use. Short of Seroquel, Zyprexa and Haldol, what other meds if any have been used to calm your AD patient? The three I named I have put on list of meds I don't want my husband to have, because of what their labeling says, and because he did have Zyprexa which rendered him a zombie for three days. 1 to 1 of 1
Hi Nora-I'm another Nora. I live in Florida and you are correct that where you live matters as far as Hospice. My husband is in a dementia ALF stage 6/7 in a steady decline. Hospice will keep him for as long as he continues to decline. Sorry your Hospice is not as user friendly.
Nora, be a bit skeptical in reading the warnings on medication labels. The lawyers and government have made the pharmaceutical companies list every possible reaction, no matter how rare. If you believed all the labels you would never take any medication, particularly aspirin. You need to discuss it with your doctor and weigh the benefits and the risks. Often you have to try several medications in order to find one that works with few or no side effects. When my wife was put on Aricept she had the first,and only, episode of vomiting I can remember in over 50 years of marriage, followed by uncontrollable diarrhea. She has had no problem with Razadyne, and now Exelon.
I agree with bluedaze on the Hospice differences depending on where you live. I have been to many conferences where Florida Hospice was discussed, and know people here who are using it. They're apparently more liberal in regards to AD with the criteria here than in other States.
Nora, I am with you on the medications, I also do not want my husband on the three you mentioned.
" I am constantly told I am doing a wonderful job with him at home, and that because of that, he will most likely live a lot longer, " The hospice folks are telling me that also, I have the same feelings that you do. How does the wonderful job of caregiving cause a longer life, I guess no stress for the patient therefore no futher or faster decline.
blue daze share with us how the report Hospice sends to medicare is written. What do they do, send a written report to Medicare each 90 days and list the stage at that time? I would love to read one of those when they do it on my husband.
Jane-this is part of my personal insurance form not the MC POT:DX:dementia, depression, HTN, hypothroidism, lower resp tract inf. Due to advanced dementia cannot perform any ADL's independently-requires full assist. Will never develop further. Will continue to decline due to dementia If getting the medicare POT will help you just let me now and I will get a copy
bluedaze, even if it won't help Jane, it WILL help the rest of us. Just seeing what was given to the private insurance company was enlightening.
I am beginning to learn that because my husband has Vascular Dementia he is going to enter the late stages differently from someone with Alzheimer's. At least one site I've been to says that many people with Vascular Dementia actually have both diseases and I think my husband might be one of them. He will lose his verbal ability well before the rest of the symptoms come up. It is likely that verbally he is already in Stage 6.
Also from something I saw recently, people with Vascular Dementia frequently die from a stroke or a heart attack. I'm pretty sure his heart tried to stop a couple of weeks ago and his pacemaker got it started again. Frankly if he can go quietly and gently BEFORE he hits Stage 7, that would be a good thing. He didn't have strokes. His damage was from his heart stopping repeatedly before they got the pacemaker into him.
bluedaze, yes I would very much appreciate the Medicare reading. I along with the rest of the group would benefit very much from knowing how it reads. It is kind of you to share this with us.
Starling, my husband was also diagnosed with multi-factorial dementia, meaning several different ones, including vascular and Alzheimer. They tell me that if they go to the end of the disease it is all the same. I also agree that if they can go quickly and quietly it is the best before the hit the very end of stage 7. No one wants this for their loved one. I pray daily that the Lord will take my husband before he becomes bed bound. Of course it is not up to us but it is my prayer. Today is our 49th wedding anniversary and of course it came and went and I was the only one who knew.
I don't think my husband realized we had had our 47th anniversary in February. He almost certainly didn't understand his own birthday a couple of days later. He was totally confused by my daughter bringing me a birthday cake in April. By next February it will be worse.
I'm literally counting off "last times" almost every month.
As of Tuesday Hospice says it is in the mail. What specifically do you need to know other than diagnosis. I know failure to thrive is a favorite. Conversation limited to 6 words or less in another favorite. When I spoke to the nurse yesterday she said Medicare will pay for services as long as the patient qualifies and that can be forever as long as they can document a decline.
I don't know about the others, but I really wish I knew some of the actual words.
I take it "failure to thrive" means that they are losing weight even though they are eating. Or that they have started to stop eating as much as they need to eat.
Conversation limited to 6 words is pretty obvious.
I've taken another look up-thread and there is some interesting things available in the earlier posts.
Starling, That is also what I want to know. Blue daze just try to tell us what Hospice says to Medicare that allows them to re-cert. Anything you can tell us will help us to understand more.
I worry that failure to thrive means they have given up. I am so green at this stuff, I am more of a business person and certainly not a clinical person.
I am also wondering what they call a decline. What I would call a decline might not be what they are looking for and I might not even think to bring it to their attention. We are waiting to hear.
Nora, This is for you. What was on the list that your Hospice folks told you to look out for. Is your husband able to communicate at all? Can he say more than 6 words?
Jane-Bill is in a dementia ALF where he is seen almost daily by the hospice nurse. As I said-when the Plan of Care arrives in the mail I will share. If Joan feels it is appropriate and she can scan and post the plan we will do that (even better-ey what)
Hi everyone, Failure to Thrive is a term that, as a pediatric nurse, I am very familiar with. In a child it means failure to grow and develop in a normal way. In an adult it would mean, basically, a failure to maintain a healthy weight and health status -in other words, weight loss, muscle atrophy, etc.
This is a quote from "Understanding the Dementia Experience" All dementias are characterized by progressive brain failure due to brain cell deterioration and brain cell death. All dementias are fatal illnesses.
Thanks Kirsten, that helps me to understand. It is quite different than what I had imagined. As I said I am not a clinical person whatsoever and I am trying to learn.
bluedaze, I needed to respond to the note you posted to me about Bill being in a Dementia Assisted Living Facility and seen by Hospice folks daily. That is really not any different than where I am with my husband today, the only difference he is here at home. Assisted Living whether it is a facility or home is the same thing. My husband would be seen daily by Hospice chaplin, Nurse, CNA or whatever I allowed. So my husband and yours seem to be in about the same place.
I also know that they continue to cover as long as there is a decline, the problem I have is knowing what THEY call a decline, I see declines daily but I don't know what they call enough to re-certify. My husband cannot even say one word much less 6 but he was that way when they first started so that would not show a decline from the beginning.
I am sorry I intruded and asked what your Medicare letter said. Thank you anyway
Jane-you certainly did not intrude. I still haven't received Bill's plan of treatment. If your Google Hospice recertification there is a lot of info you can pull up. I am a home health RN and this is all a learning experience for me, too. This isn't fun anymore. By the way, Jane-how did you learn the ropes?
Jane-you just know so much and are so helpful. What we share and learn from each other can't be found in books
Boy is all of that true. I've only read a couple of the books out there, and both were good ones, but NONE if the information that Jane and bluedaze have shared, and that the rest of you have shared, was available in those books.
I think the books are were you start. But if you really want detailed answers to the questions we all have, about how it all works in real life, this forum (and others like it) are the only place the answers are available.
Our NH recommended Depakote. When I called our doctor, he was horrified. He told me that Depkote is for calming down epilepsy victims when they are having a seizure. He would NOT allow it to be prescribed, as it could actually cause a seizure.
Sounds like a good doctor, right? Except that he didn't solve my problem, which was that my LO's anxiety was so horrible she was harming herself and others with agitation. NONE of the sedatives normally prescribed worked, which was why our NH was asking to try it on her. My NH already knew everything the doctor said, but had had success with it in the past. I changed doctors, and found one that prescribed it. Praise be, it worked and we have had calm times since. And no seizures. Sometimes the listed side effects happened to like one person out of a million. But they still have to list it. Good luck.
Jane-I finally got my hands on the Hospice team care plan. It is so generic as to make it valueless-sorry. Best is as I suggested-just Google Hospice recert and all the info you need will come up. I will be having lunch with Joang on Thursday and will bring the plan for her to see.