My mom lives in AL & has vascular dementia, I think. She has all but stopped eating & drinking. She's lost 20 pounds in about 3 months. She thinks I'm her sister. Has trouble speaking due to word-finding problems. I had her evaluated for hospice care about 3 months ago, but she did not meet criteria because she was getting PT. She was re-evaluated last week & I was told again that she did not meet criteria. She still gets PT (for what purpose I don't know), so I know that disqualifies her. But I was also told that, even with dementia, she can "still make her wants & needs known" so that too disqualifies her. I had never heard of this! Her MD is hard to work with, but I can't get her to a new MD until December! At this rate, she may not make it to Christmas. Conventional advice says don't wait too long too long to get hospice involved, but I can't seem to get them involved! I can discontinue the PT (she hates it anyway), but what do I do about communication? Apparently since she has no PHYSICAL terminal illness, she doesn't qualify. Please provide some insight if you can.

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The patient has to agree to go on Hospice.  If she is not clear about wanting it, it will not happen.  The MD has to certify she is terminal with less than six months to live.  Understand that on Hospice, all treatments like chemo, PT and MD visits stop.  No ER visits; if you take her to the ER hospice immediately ends.   If she can still get around at assisted living, she's not ready.
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Technically under a "dementia" (aka Senile Degeneration of the Brain) diagnosis hospice prefers the person be a 7a or lower on the dementia FAST scale. So you might google FAST score to see what that entails. A fast of 7a cannot speak more than 5-6 "intelligable" words in a day. Intelligable means that the person is coming up with these words on their own. Not repeating words or saying things that are set in long term memory like her name or "how are you". Hope that makes sense. But, we frequently admit persons that are more verbal but have had declines like the weight loss you've described, multiple falls, multiple hospitalizations, multiple other health diagnosis, ect. A thorough evaluation should be done by an experienced hospice RN or physician. Not all hospices provide an experienced hospice nurse due to high turnover in the field and frankly the complexity of cases and medical history that needs to be waded through to provide an in depth evaluation. And yes, PT would need to stop as hospice does not approve persons receiving rehabilitation because it's not in line with it's comfort care policy. The only tyle of PT that is usually acceptable is more short term for safety type things for more cognizant patients that are usually receiving hospice for diagnosis other than dementia.
As far as getting another order to evaluate, the first order should be good for another hospice to evaluate if you can get it from them. If not most hospices will be glad to contact the doctor and ask for a verbal order from him/her
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Find another Hospice organization.
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This surprises me that u don't know why she is getting PT. Unlike a NH, an AL has to run this by the resident who is with it or a family member before putting in a request to the residents doctor. You need to talk with the RN and find out why you weren't consulted.
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(Just now getting back to respond.) Thanks for the suggestions. Mom has COPD, thoracic aneurysm, severe kyphosis, needs a great deal of assistance transferring & toileting, has fecal incontinence, & needs wheelchair to get to dining room & hairdresser. Has been "found on the floor" at least 3 times in the last 2 months. She is "out of it" as my dad says. This hospice doesn't seem to know about palliative care. Like others, I'm trying to avoid a crisis, which would then subject her to more medical treatment that may not be helpful. Guess that's not possible.
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My aunt (92) has vascular dementia. I’m like you, I have to add, “I think.”
She also takes PT and it really helps her. If she didn’t have it she would lose her mobility even more.
I have been told that a person on hospice can have PT if that keeps them more comfortable?? Sometimes I think it’s that the particular hospice doesn’t know how to code the request, hasn’t had the experience. I could be totally wrong.

My mom had CHF. When I asked about hospice at about 95, I was switched to a heart transplant clinic that managed her CHF for the rest of her life. She was never really on hospice, palliative for only a day.
She died in the hospital at 97. I have regretted her last hospital visit and wished that she had been on hospice for the last few months of her life, or at least for her last illness, so I agree with you on wishing to have it earlier rather than later.

I believe now, looking back, that if I had called in hospice on my own, she would have been accepted. Have you tried that? Using their doctor instead of my mom’s.

My mom had lost a lot of weight too but it was hard to tell due to the CHF.
Is your mom overweight even with the weight loss? Are her vitals good? Has she had recent blood work? That could be done at an urgent care or ER. Hopefully one of the many nurses on this site will see your post and can tell you what hospice is looking for. (Edit: I didn’t see Barbs post with the extensive list until just now. Takes me awhile to post).

Have you had her to a speech therapist for aphasia?

I know it sounds like snake oil but my cousin has had fabulous results using CBD oil with her mom who has Parkinson’s. Was non verbal and IS on hospice. She is now laughing, smiling, painting, enjoying life. She still has Parkinson’s. Not saying this is a cure but she is off of three meds (with doctors approval) and a delight to be around.
My cousin thought, what do I have to lose? And this stuff works right away. Not six months or never from now.

Her dad didn’t think he needed it, so cousin didn’t push it with him. Afraid he would want to drive again....

I think you are on the right track with looking for another doctor. Regardless of your course of action, I wish you peace.
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This is from a specific Hospice Organization, but it seems to lay things out pretty clearly:

Hospice eligibility criteria for dementia: 
In order for a dementia patient to meet the hospice eligibility criteria, he or she must have a life expectancy of six months or less if the disease continues in its typical progression. For patients with dementia, it may be time to consider hospice when the patient’s physical condition begins to decline. Some key things to look for include:
a diagnosis of other conditions as COPD, CHF, cancer or congenital heart disease
an increase in hospitalizations, frequent visits to the doctor and/or trips to the ER
a diagnosis or pneumonia or sepsis
weight loss or dehydration due to challenges in eating/drinking
speech limited to six words or less per day
difficult swallowing or choking on liquids or food
urinary and fecal incontinence
Unable to sit upright without arm rests on chairs or may slip out of chairs and require sitting in special chairs
unable to walk without assistance such as a walker or now requiring a wheelchair
unable to sit up without assistance (will slump over if not supported)
no longer able to smile

So, what is your aim here? Would palliative care serve the same purpose? In other words, are you looking to give up the ER visits and repeat hospitalizations?

When my mother had repeated pleural effusions, her pulmonolgist finally said to me "stop poking holes in your mother" (fluid kept building up and kept having to be drained; it was painful and stressful).

We signed on the palliative care (she was in a NH at the time) and we all agreed that unless she fell, there would be no ER transport. She was treated "in house" for pneumonia at least once and a couple of UTIs. But we were determined not to do another hospital run, because each one left mom less and less alive.

We ended up doing hospice only at the very end, after a fall, and yes, another hospital run. Sometimes these things can't be helped.


This is unbearably hard. Stick around here. We all know what you're going through.
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nature73 Nov 2018
I would be happy to have her on palliative care, but the hospice I'm working with does not seem to provide this. Her speech is garbled, her mobility is extremely limited, & she needs oxygen most of the time. She recently moved to Memory Care. I'm a retired RN & have an understanding of the health care system, but I feel like I'm pulling a wagon loaded with tons of steel. If I wasn't directing things, nothing would get done. I just want her safe & comfortable. Guess I'm rambling & got off the subject....
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