Alzheimer's Disease Support Group
Alzheimer's disease (AD) is the most common cause of dementia and characterized by progressive cognitive deterioration with declining activities of daily living and neuropsychiatric symptoms or behavioral changes. An early symptom is memory loss (amnesia), usually manifesting as minor forgetfulness that becomes pronounced with illness progression, with relative...
Rollie has been kicked out of hospice. Hospice called the VA to see if VA would pay for it, VA said, no way he has to be a Stage 7c. So Hospice said, 'sorry, but you are on your own again'
Basically he has to be on death's door, completely bedridden.
"In patients who remain alive, stage 7c lasts approximately 1 year, after which patients lose the ability not only to ambulate independently, but also to sit up independently (stage 7d), At this point in the evolution of AD, patients will fall over when seated unless there are arm rests to hold the patient up in the chair"
Notice how it says, 'in patients who remain alive...'
Hospice Admission Guidelines for Dementia --- Patient shows ALL of the following: (Patient is at or beyond stage 7C of the Functional Assessment Staging Scale {point 1 and 2 below}.) 1. Unable to ambulate without the assistance of another person. 2. Speech is limited to approximately six or fewer intelligible words (some hospices use the next requirement) 3. Unable to communicate meaningfully - speech is limited to a single understandable word on an average day - (or during the evaluation) (The single word may be repeated.) There is some variation on this point. Some hospices use 6 words as a limit. Some use a requirement similar to this -- No consistent meaningful/reality based verbal communication; stereotypical phrases or the ability to speak is limited to a few intelligible words. 4. Unable to dress or bathe without assistance 5. Urinary and fecal incontinence (intermittent or constant)
AND - Patient has had one of the following within the past year: (Demonstrates a declining condition and likely future medical urgencies.) Aspiration pneumonia Upper urinary tract infection (kidney involvement) Septicemia (blood infection) Recurrent fevers after treatment with antibiotics Multiple decubitus ulcers (bed sores) of stage 3 or 4 Poor nutrition demonstrated by 10% weight loss in six months or low blood levels of nutrients ( Serum Albumin less than 2.5 gm/dl) or difficulty swallowing food or food refusal Other significant medical event or condition that supports a limited prognosis (This additional point has been added by some hospices.)
Basically he has to be on death's door, completely bedridden.
"In patients who remain alive, stage 7c lasts approximately 1 year, after which patients lose the ability not only to ambulate independently, but also to sit up independently (stage 7d), At this point in the evolution of AD, patients will fall over when seated unless there are arm rests to hold the patient up in the chair"
Notice how it says, 'in patients who remain alive...'
Hospice Admission Guidelines for Dementia --- Patient shows ALL of the following: (Patient is at or beyond stage 7C of the Functional Assessment Staging Scale {point 1 and 2 below}.) 1. Unable to ambulate without the assistance of another person. 2. Speech is limited to approximately six or fewer intelligible words (some hospices use the next requirement) 3. Unable to communicate meaningfully - speech is limited to a single understandable word on an average day - (or during the evaluation) (The single word may be repeated.) There is some variation on this point. Some hospices use 6 words as a limit. Some use a requirement similar to this -- No consistent meaningful/reality based verbal communication; stereotypical phrases or the ability to speak is limited to a few intelligible words. 4. Unable to dress or bathe without assistance 5. Urinary and fecal incontinence (intermittent or constant)
AND - Patient has had one of the following within the past year: (Demonstrates a declining condition and likely future medical urgencies.) Aspiration pneumonia Upper urinary tract infection (kidney involvement) Septicemia (blood infection) Recurrent fevers after treatment with antibiotics Multiple decubitus ulcers (bed sores) of stage 3 or 4 Poor nutrition demonstrated by 10% weight loss in six months or low blood levels of nutrients ( Serum Albumin less than 2.5 gm/dl) or difficulty swallowing food or food refusal Other significant medical event or condition that supports a limited prognosis (This additional point has been added by some hospices.)
HUGS HUGS and more HUGS
Janel
So I am yes, I want to write letters but to who and exactly what should I say?
Her initial assessment done by the same nurse,put her at a stage 7c.Now I have no idea.Is it that the money has dried up?I do not understand as the Government would be paying much more,if I were not caring for her at home.It sure is crazy.
1.)Write to your local newspaper....we could write in support of you too...A letter describing what has happened and advocating for those without a voice...many people will soon be where we are....
2.) your local congress person and senator...we could back you up
3.) the White House...the president is obviously running again so this might be a good time to call/write.
4.) I could write to the National Association of Social Workers of which I am a member
5.) the AARP
6.)your local Senior Center
7.) The National and local Alz assoc....
we could draft a prototype letter here and all edit it then print it out in multiples off our computers...email and a call for back up? addresses on internet I think
just some ideas...any others out there????
To Whom It May Concern:
My husband Rollie in addition to being a great father and husband is a Vietnam War era veteran. He is sadly suffering from Alzheimer's Disease and is very ill at this time.
He requires 24/7 care and I am gladly doing that in our home. What I am reaching out to everyone about is this: I need help, badly, in providing this exhausting and demanding care to my husband.
The Veteran's Administration has recently refused to pay for Hospice Care for my husband although the Hospice which evaluated him had accepted him as eligible. They apparently did not check with the Veteran's Administration to see if the VA would pay for this benefit which he is entitled to .
In my conversation with the VA upon hearing this shocking news, that he was going to be dis-enrolled in Hospice, due to lack of VA payment, I understood that the criteria for his admission was not quite 'there' yet. And apparently the VA is concerned that they will somehow be penalized if they authorize Hospice now. He and I certainly need it now. And it is not clear to me how the VA wold be penalized for authorizing needed Hospice, which the Hospice organization itself approved and deemed necessary.
I have heard from many friends-- also caregiver's to Alzheimer's sufferers-- that getting Hospice help is increasingly difficult and has become almost impossible until the person cannot walk or hold their head up.....a time when perhaps the help is actually a bit less necessary than when they are pacing and moving all the time....
The Medicare definitions of stage-approved Hospice acceptability have apparently been tightened in the last 3 to 4 years....for reasons that are not completely clear. ALzheimer's victims and their caring families have not needed help any less. I guess the restrictions have to do with money, but it is not clear what and why these tighter restrictions have been placed on families in a time of dire need.
I am reaching out to the wider community to see if there is help out there for us....does someone have information or political clout or something that can help a veteran who has served his country honorably and his loving but exhausted family ?
We would be truly grateful...
Thank you for your time and attention to our predicament...right now it is ours but one we understand than many unfortunate Americans will find themselves in in ever increasing numbers....Maybe if we begin to act now more direly needed help will become available....
Yours truly,.......
I wish I knew what to do for you. I really do know how awful this is. Ken is going down so fast right now and it is so physically and mentally exhausting. We really do need all of the help we can get.
I love you, Deb
I can't remember. but do you have children? If so, can they possibly come and help? What state do you live in?
I'm so sorry you are going through this. I want to help you in some way and I'm going to see what if anything I can do. My prayers are with you.
Deb...just a thought....did you call that man at the American legion? What about that # or name that my guy gave me for you at the base?
Do you want me to call my casualty assistance guy, Marty?? I would be most happy too. You want to message me your phone ?
I am going to get some addresses of people I think will be bets be served by a letter and post it later tonight (after Rollie is asleep).
Carolyn, my VSO guy does not inspire confidence in me and sometimes I know more than he does so I am not going to bother with him. My family and a couple of my friends are working out some kind of plan/schedule to get me more time. I just don't want to count on any organization at this time, I just can't take the disappointment and my family is dependable.
I might call your guy though, I will look through my messages and find his phone number. Thanks