It is not as though the Alzheimer patient has not already lost the most of anyone in a life time, they keep loosing. Beginning the year 2013 MedPac the advisory commission for Medicare payments are no longer recommending that an Alzheimer patient be in the Hospice care early in stage 7. The Hospice programs will begin implementing this program most likely beginning this year in order to be ready for the change. Medicare is going to begin paying the Hospice programs more during the initial sign on with them, then less in the middle of the stay, and again more at the very end. This will encourage Hospice groups across the Nation to discharge a Hospice patient sooner rather than later especially after the initial 180 day stay. In the past the Alzheimer patient was accepted into the Hospice program early on in the disease. This change will cause many not to qualify as early as they did before and not be kept during re-certifications past a certain point. Hospice will no longer be paid by the number of patients they have each year but rather by the length the patient is in the system. The less time they are in the Hospice care the more payment Hospice receives.
Medicare will begin reviewing any Hospice facility who has 40% or more of their patients under Hospice care for more than 180 days.
The Medicare advisory panel does not feel that an Alzheimer patient should be in the program until the very last of the disease process. If an Alzheimer patient does not have co-morbidity then they will fair even worse when the re-cert takes place. It is not enough that the brain is the computer that controls the body, thus causes the body to stop functioning, it is not enough that the patient is in a wheel chair, and depends on someone else for their utter existence.
I don't know if everyone knows this but Medicare did not even pay for physical therapy for an Alzheimer patient after a broken hip until during the last few years. I think they are treated less than human and I for one wish I could scream this into the law makers ears until they became aware of the cracks our loved ones fall through. I feel so bad for the Alzheimer patients who do not have the love of a family to advocate for them.
I wish we had buses and buses, private jets etc. to go to Washington and lobby for the poor Alzheimer victim, but then we as caregivers could not leave our loved one long enough to even do this simple task because they need 24/7 care.
Sorry but I had to vent and I knew you would understand.
Jane you said, "I think they are treated less than human..."
I believe that THAT is the reason why many AD patients suffer in society, and that is the reason I pray that most of these Law Makers go straight to HELL!
I have been contacting my congressional reps in the hopes that one day this shameful treatment of AD patients will stop. I will help you SCREAM into their ears as well!
Write exactly what you just wrote to your Senators and Congressmen/women - If you give me permission, I will take your posts off of this board, and bring them with me to DC. I was just talking to our Alz. Assoc. woman who makes the legislative appointments for the forum - I'm already set up for meetings with 3 legislators.
FYI - Sandra Day O'Connor will be speaking at a Senate hearing again this year during the AD Forum.
Joan-please take this: Dementia is a terminal disease. Sometimes it takes a very long time an somewhere along the way kills the caregiver. Hospice is the only hope for so many of us.
Thanks, Jane, for letting us know. I had heard that two parts of Medicare reform were going to be making the insurance companies shoulder more of the Advantage plans' costs, and "cutting back home health care." Which scared me but I couldn't find anything more about it.
I agree with everything everyone has said, but I've always felt a little funny about using HOSPICE as a long-term care substitute for AZ patients at home. What should ideally happen, of course, is that Medicare would provide the same kind of care that Hospice is providing to EVERYONE at home and as disabled as our Stage 7 people are - whether they are "dying" or not. It should be enough that there is certification that the person needs daily attention from a trained professional or someone close to it, including providing respite care for the full-time caregiver.
briegull-why do you feel funny about using Hospice for long term care. It is funded through medicare as is regular home health care. It is the money we paid in all our working days as a SS deduction. I don't know who funds Hospice for those not yet on medicare. Their programs vary so much in different areas.
briegull you might possibly be able to google it on the internet under the new rules such as Medpac or Medicare Payment advisory Commission.
I learned this through my continued education and seminars.
Joan, yes please by all means take my post with you to DC, I would go with you if I could. I would love to shout it to the highest member of Congress. I am sick and tired of how the Alzheimer patient is looked upon and treated, it breaks my heart even thinking about it.
Do they not realize that with the Alzheimer patient the brain is injured, the same as a broken leg, arm or any part of the body except the brain is a more vital part of the body. I am having a hard time dealing with the way they are treated and cast out.
The Social Security Medicare system is NOT designed to fit the needs of SENIOR citizens health matters. Medicare refused to pay for a PET Scan ordered by the Neurologist in her diagnostic process. Someone in Washington decided that a PET scan wasn't designed to work in this regard!! But a renown Neurologist who spends her life working only with Alzheimer's Patients said it was, indeed, essential. (My Secondary Insurance picked up 80% of cost and I paid the difference) Health officials say some form of dementia will affect most people after the age of 80. Why is Alzheimer's Care ignored in Medicare's formulary. Dementia affects not only the patient himself, but also the Caregiver. Statistics prove that most patients will outlive their caregiver. I am waiting for a good explanation from our government that explains this void in coverage.
How do people with chronic major disabilities live? How do their families survive? Is it all SDI? I'm serious; I have no idea how they cope, for many many years.
People don't live with chronic disabilities. It ruins us all. We had a very comfortable nest egg, which allowed us to take trips to Europe or other places every year...and we owned a beach house as well as our own house. At least 60% of the nest egg is lost in the market, our property values are down and we cannot sell our home,.. (a home purchased for $559,000 down the street just sold for $350,000. The owners had finally let the house go back in a foreclosure after 400 days on the market).. We're sunk! Just as deep as the Titanic sunk. There is no way I can keep up our personal expenses and place him in a $60,000 / year facility. And no one cares! It's money up front, or go home. It makes me so angry. He did not have extended care insurance, and had always said, "I have more than enough money to take care of anything we will need." Wroooooonggg!
Jane said in her first post that AD patients are treated less than human and as horrible as that is, I am afraid that it is much worse.
I get the impression that people with AD are not even considered persons. They are no longer themselves and slowly lose all that some consider to be the self. It is a an incomprehensible tragedy for them and those that love and continue to care for them. Why do we, in these United States, with our rich heritage for individual freedoms, and lookin' out for the little guy, deny such freedom, care and respect to those who need it the most? How can we go on treating human beings this way?
I cannot understand it at all. It has to stop, and it has to stop now! We are the voice for those who have no voice and we need to start yelling REALLY LOUD!! We have the right to alter our government if it fails to provide the rights it claims to protect and defend and it needs a major alteration now. If change is going to come, if change is going to mean anything at all, and not just one more meaningless word that politicians use to get elected, then we have to change , REALLY CHANGE, how we treat those that need our help. It is not only a christian duty, it is an American one that is long overdue.
It is too long the law's delay, we all of us, band of brothers and sisters, must take arms against this sea of troubles, and by all of us opposing, end them.
guy
PS I was reading Hamlet tonight and this post came out.. I probably shouldn't have, but Jane's first post here really struck the proverbial nerve! So I'll just click the button and y'all can all give me what for...:>)
i have posted on this problem in our situation. my dh is now in stage 7. he can still walk,pace,sometimes he cannot get his balance right. he is 53 yrs old,has eoad and has also been diagnoned with parkinsons. i have gone round and round with hospice. their dr. does not think dh is ready for hospice transitions [life expectency has to be 12 months or less] this program would give me help with bathing and provide a sitter to stay with dh while i went to the grocery,or whatever i wanted to do for 2 hrs x weekly,but because the neuro thinks dh will live 12 to 24 months,we do not qualify for that program,so forget hospice,we sure don't qualify for that[life expectency 6 months]. they told me they go by medicares rules,even though dh is to young for medicare and hopefully our insurance would pay [there is no charge for hospice transitions],it doesn't matter, that is how they operate. it does not matter how bad a patients quality of life is,if they don't meet hospice criteria,forget it. i certainly have rethought my oppinion of hospice. i know they have done alot of good for alot of terminally ill and their families,but what about our loved ones with ad that don't quiet fit in to the program? where do our ad loved ones fit in? who is there for them, but us,the caregivers? where do we turn for help when there is none? who speaks for ad? i'm not talking about the research,i'm saying,who speaks for the victims,the people trapped in this unspeakable abyss, that suffer so terribly,that there are not words in the human language to accuratly describe. WHERE is help? jav
Guitarguy, thats profound! Jane, thanks for the information for sure. I'm confused by the ways and means of this system..Medicare/Hospice/ Rules and the ways and MEANS that agencies and govt. goes about these changes.
Hospice has always meant, to me, that the end of life is very near. My sister, was a nurse with hospice for a while . Interestingly, she complained at times, that HOSPITALS kept the hospice patients 'too long'....that by the time they got all the paperwork, exchanged all the medical information, got NEW prescriptions, and equipment set up for the patient, at home.. it was 'too late'. Just a nudge there that made me realize that they're all in business...an important and needed service, but a business nonetheless.
This is too longwinded.. But maybe its time for the TERMINOLOGY to be changed for the needs of our loved ones.. If they don't FIT tne protocol for hospice, when they need 24/7 care.. WHERE DO THEY FIT? Brain Injury seems to be a good fit. Lets call it BRAIN INJURY..PROGRESSIVE BRAIN injury at that... Can someone up there/out there figure out a protocol for that kind of CARE..
Are our congresspeople/ or MEDICAL system, so completely ignorant that they don't realize that a person with a hip replacement NEEDS physical therapy no matter what? In their ivory towers away from the real world, its too easy to draft new 'rules' with no idea at all of what they are doing. If CHANGE means terminology that FITS and rules that FIT and healthcare services that FIT.. that's great. Otherwise, I'm with Hamlet!
None of the governments view of dementia, especially the late stages, is comprehensible. What has discouraged me is that when I had a conversation with a highly visable Senator over dinner at an Alumni meeting a year or so ago, he explained that there were so many bills in Congress, it often takes years to get these "little items' PASSED. If they had to tend to their wife, husband, or parent's morning routine before they left for work, I betcha they'd get something passed. They are too removed from reality up there. They promise us EVERYTHING but when they get to the HALL, it's all partisan politics, not people-caring politics.
Typical statement: I read and heard on TV that the multi million dollar Stimulus Bill was over 1000 pages long, and very few, if any of our elected officials in Washington EVEN READ IT and understood what it covered, before voting to pass it. That's mind boggling. It's like a sporting event up there...We've got offensive and defensive players, and each vote is like a team play. Offense vs. Defense.
NancyB, I've got the same problem you mention a few posts back - we have lost 60% of our "nest egg". We, also, do not have long term insurance because I felt I had enough to take care of any problems. Then we get this crash in the market (it's down big time again today) and I don't see where we will get the money to pay for care as DW gets worse. As it is, my financial advisor told me a couple of days ago that I am spending 60% of my income on medical care for DW. How long can this continue? I agree with your comments about the government - it's all politics. They are completely insulated from any sense of reality.
We, the caregivers of our loved ones with AD, are the only advocates that a person stricken with AD has. I know the Alzheimer's Association and others are out there lobbying for for recognition of the issues a person afflicted with AD and their families face. But utimately it is up to the caregivers and the families of those with Alzheimer's Disease to contact our representatives and let them know the problems we face.
I, like the majority of other caregivers around the country, do not have the huge financial resources that are required to pay for my DW's medical care needs and potentially her long term care out of my pocket. Medicare, Medigap and Medicaid will soon be the only available resourses I can turn to for financial assistance. How can our government fund and extend health care benefits to every underprivleged illegal alien who lands in this country, fund the medical care costs for unwed mothers and their illegitmate children and then overlook the most basic health care needs of the elderly of this country? Most of the AD victims and their caregivers have been life-long taxpayers, we have paid Social Security and Medicare taxes for years.
Alzheimer's Disease is an extremely serious national medical care issue, it destroys not only the patient's life, it destroys the lives of their loved ones, caregivers and families. It consumes their emotional health at a rapid pace,and it also destroys the finances of many families who struggle to care for them as long as they are able. As the population of our country ages it is going to take more and more money to combat this horrible disease. Hospice is one of the most compassionate and cost effective programs that exists to deal with the end of life issues created by Alzheimer's Disease. It is imperative that the funding remain in place to allow these programs to continue.
Politicians will use your pleas to push for national healthcare. National healthcare that put you in line for needed medical treatment often dying while you wait. That is why so many Canadians come to the US for needed surgeries and treatments.
Are there Canadians here? If so, how are the needs of your LO dealt with in your healthcare system? Is it more supportive of the long term care needs you have?
When I went to the site to call the senators, there was a "comment to us" line so I did.
I have had several exchanges with Kate Gordon
Associate Director, Campaigns & Grassroots Advocacy National Alzheimer’s Association
She says that some of the Medicare payments to PROVIDERS will be reduced in the new budget, as per recommendation by the MedPac commission, but she also said:
The use of Medicare Hospice for persons with end-stage dementia has always been limited by statute to same “terminal within the next 6 months” guidelines as other Medicare Hospice beneficiaries.
Could it be that certain (all?) Hospices on their own had decided to be lenient about the guidelines and now if they're losing money be tightening up? Apparently the government stipulation does NOT specify Hospice (though obviously they're big Home Health players) and does not specify Alzheimer's.
Does anyone know if the Hospice is tightening up in general for everyone not just AZ patients?
I wouldn't use Canada as a model for Universal Health Care. There is no perfect system, but from what I have read, France has a pretty good system.
Here's a link to a good article comparing different countries and their Heath Care Models: http://healthcare-economist.com/2008/04/14/health-care-around-the-world-an-introduction
But what, dare I say, can you do, when you are in fact dying and have no resources? Dementia destroys with a fury that I can barely comprehend. What will those of us who are working do when we have to stop working, lose our income, and then have increased costs as this demon of a disease slowly destroys our wife or husband and takes years off our on lives in the process? We too here in the US are dying while we wait. But wait for what? Godot? There is no cure. Not even close. The current treatments, to use a technical term, suck! The 4 horseman of the Apocalypse are heading straight for us with a vengeance I usually associate with Nazis or Caligula, and we are sitting here with nothing, not even hope! All we need is some help with dying! Now is that too much to ask?
There are some days where it seems to me, that it would be better for all of us if we just lace our happy meals with hemlock and just be done with it! But I’m not going to do that! To quote Rocky Balboa, “Nothing will hit you harder then life. What matters is no matter how many times you get hit, you keep getting up and going on.” I may up end being a pauper with rags for clothes and mud for food, but I will fight until I drop dead. The government of the US is in a for a big brawl from this old Kensington Kid!
No single one of us caregivers has the clout to make a difference on this...BUT... Our history, here in the US, is that we each can do 'something' and all the 'somethings' add up. I have a suggested article on support for the caregivers, at a local level, pending with an Editor at our local paper. Not all support has to come from Agncies and big organizations. We can write our Representatives, go to the Hearings, etc. and so forth. As one grass roots organization did, we can--"each one teach one". We're doing that here on this board every day.
So many of you speak of how you are managing on less because of the Stock Market trouble. Try starting this journey with no investments; no savings, 2 Social Security Disability incomes and a 20 hr a week part-time job. Be buying your house with a house payment with taxes and insurance of about $700 a month. Then lose the part-time job. And yet, we're making it.
What this whole thing can never do without my acceptance, is destroy my belief that I can get my DH through this horrible tunnel of Dementia. Maybe it is the strength instilled by my parents in raising me to reach for as normal a life as I possibly can, despite my disability. It means thinking outside the box all the time. It means deciding to change the dream, when the original is out of reach. You don't quit. You don't retreat. You hunker down and make a new plan of attack.
One lady I know of was seeking help for her mentally ill daughter. When the Dr. wasn't open to medication changes, she got up, thanked him for his time, and told her daughter to stay there with him. She looked him in the eye and said, "You take her home and deal with how well she's doing." He backtracked fast, and the daughter got the meds that she needed. I don't think I'd go that far, but I'm not sitting on my hands waiting for help to materialize. I call, and call, and always ask, "Can you suggest any other places to call or topics to try?"
Also, when looking for help, don't discount the help available, just because it wasn't what you had in mind. ANY HELP WHICH TAKES WORK OFF YOUR DO LIST makes your life easier. It frees you to take care of the rest. Even if you are able to do a chore, that doesn't mean you should be doing it if someone else can and it would leave you free to do another(that only you can).
Advocating for our LOs is a part of the job. It has to be done at all levels. Some are better at one part of advocating, others at another. Between us all, we can make a difference. I have to believe that. Through history we've seen it happen before. Now it's our turn.
briegull, this is a little copy of what has been decided by med pac. The Alzheimer patient has had their own criteria until now. Our Hospice Nurse told me today that they are no longer just looking at the decline, that we would definitely qualify as declining but they are now needed co-morbidity also. She told me that they have a patient who is bed bound in a fetal position and they are having to remove her from the program because she is stable with no other co-morbidity.
Below is part of what med pac is saying.
Hospice is for the dying. It's for people who are likely to die within six months if their terminal disease follows its likely course. Of course it's notoriously hard to prognosticate how long someone has left. That isn't really the issue here. If a patient doesn't die "on schedule", hospice doesn't expel them (assuming they are still terminally ill and meet legal hospice criteria, that they haven't rebounded or gone into remission.) Some people can and do stay on hospice for more than six months. MedPAC is fine with that. Up to a point.
As a rule—there are and will continue to be exceptions—large numbers of slowly, declining frail elderly people with conditions like Alzheimers should not be in hospice care month after month after month after month. This doesn't mean we don't have to come up with a better way of taking care of this population, of meeting their complex medical, practical, social and spiritual needs. We do. But that's a long-term care problem—a very serious problem that deserves more attention than it's getting right now. It is a palliative care problem, another area that needs our attention. But it isn't the Medicare hospice benefit. Having hospice collect from Medicare a daily fee (about $140/day now with some regional variation) month after month after month when it isn't delivering very much care to the patient (at home or in an nursing facility) isn't a practice MedPAC wants to encourage. Hospice now costs Medicare about $10 billion a year. MedPAC isn't necessarily bound and determined to cut that number; the payment changes it is recommending now are budget-neutral.
Actually, I think I agree with them BUT: the long-term care problem - home or n.h. - is a serious one to tackle (that's what the legislation we've been urging on WILL tackle if it's successful) and it will probably take awhile to get passed and into reality. Meanwhile, cutting back AT THIS TIME, when the long-term care thing isn't passed, is reprehensible. Maybe it's a way to pressure the passage of the long-term care bill.
briegull I for one do not agreee with them. Other patients in Hospice with CHF or other ailments do not have to have other health problems, if they single out the Alzheimer patient then it should be the same for all others. I do agree with you on the long term care issue. This is a copy of the e-mail I sent to our Senator.
It has been brought to my attention that Hospice will no longer consider an Alzheimer patient as being re-certified under the Hospice program just because they continue to delcine from the initial sign on into Hospice. without co-morbidity. They are not considering that the injured brain of an Alzheimer victim to be a physical problem. It is not enough that they have declined to having NO SPEECH, UNABLE TO FEED THEMSELVES, TOTAL INCONTINENCE,UNABLE TO WALK WITHOUT ASSISTANCE, in other-words totally dependent on others for their utter existence but yet under the revised Medicare rules this is not considered a physical problem.
Please tell me when the Alzheimer patient will be recognized to having any rights at all. Please vote for legislation that will help these people have the justice and respect that they so deserve.
When checking for my husband's VA benefits, I was told that his retirement pension of $3600 per month disqualified him from receiving the home / nursing home benefits, because he earns too much money. This is not fair, because there is still ME!!! and we have household expenses, mortgage payments, auto expenses and we just get by. To be faced with a $5000/month fee to place him in a care facility...... is absolutely impossible, and the cost for in home assistance is also beyond our budget. They want a minimum of 4 hours a day. Government is ignoring the real facts of life that affect those of us over 65. We cannot get jobs because of health problems or in my case, staying home caring for a seriously demented gentleman.
As much as I will continue rail against policy that really harms those of us, who beyond our control, are dealing with these harsh realities of caring for those who cannot care for themselves, we would probably do well to raise the awareness of this problem in our local communities. Getting help from friends, family, support groups to help us. I know it is not easy, but until we get the help that I believe is deserved, then we are going to somehow fend for ourselves. Not easy I know, but we have to do something right?
Having said that, I will continue to rail. I don't know that Universal Health Care is the answer, but I do think that those of us who have no control of what is happening need more thoughtful consideration and effective action and programs that what we have now. What we have now is woefully inadequate to say the least.
Yeah Nancy B. We still have 2 dependents at home, a mortgage, I cannot work as I have been taking care of DH to this point. They still want me to spend down so much before they will cover long term care costs. BECAUSE WE MAKE TOO MUCH!!!!! Our total monthly income is less money than the monthly rate for a NH. I guess too they think its cool to let the spouses see the nest egg evaporate, and expect us to start again at 50, 60, 70 and more, to rebuild our retirement.
Nancy B., you are so right about the VA benefits. My DH was disqualified because of MY IRA, and the small amount of wages I make by working part time. Only other income is SS for both of us and a very small pension he gets. All much less than a NH would cost. Yes, we all need to continually rail!
Vickie, we all hear of people divorcing to make the rules work out. That's so unfair, and quite frankly, deceiving the government, because we'd still be living together. I hate the rules as they are set up....they apparently want us to living on the street, (both the healthy one and the infirmed) to pay one cent. How does this make sense to anyone.