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This patient spends every waking moment sobbing, shaking, begging to die, does not recognize any family or friends, doesn't know where she sleeps or eats, is highly agitated when not heavily medicated, basically not one ounce or "quality of life" or "dignity" remaining. Why?

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It is kind of a stump-the-audience question, isn't it? You didn't get 15 members jumping in immediately to give you an answer.

Sometimes I think those maintenance drugs are there from habit. They were needed/useful once and nobody has bothered to evaluate whether they are still useful.

The first year my husband had dementia the symptoms were very extreme (probably the result of inflamation in the brain, which we didn't know then). We got a wonderful geriatrics specialist for his primay care, and she took him off all of his drugs except those prescribed by the dementia specialist to treat those symptoms. As Hubby's symptoms lessened and it became clear he may not be near the end, the geriatrician gradually added the maintenance drug back. If he was going to be around, possibly for a few more years, he might as well be as healthy as he could be.

Sometimes it is not clear-cut what is for quality-of-life and what is life-extending. For example, my husband has heart issues. He'd really prefer to die of heart disease than to die of dementia. Why is he taking heart medications? When I discussed this with a cardiologist he said the drug could be considered a life-extender -- that is why he prescribed it for me -- but it also protects against stroke. People don't necessarily die of strokes, but suviving a stroke with dementia would be defintiely a decrease in quality of life. So to continue it or not is a judgement call.

All of Hubby's other maintenance drugs reduce his discomfort or improve the quality of his life. But it is a question we revisit at least a couple times of year, with a doctor who specializes in treatment of the elderly.

So, I think your stumper question is an excellent one. Is this patient eligible for Hospice? I think that they could help the patient's family sort out what drugs could be dropped. And they could add other drugs to keep this person calmer and more at peace. If the patient is not yet eligible for Hospice, I think a frank discussion with the doctor is in order, by the person who has medical proxy for this patient.

Good question.
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The hospice usually does either FAST or MRI score to evaluate:
FAST - Hospice Prognostic Systems:
The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. The FAST identifies progressive steps and sub-steps of functional decline. NHPCO guidelines state that a FAST stage 7A is appropriate for hospice enrollment, based on an expected six month or less prognosis, if the patient also exhibits one or more specific dementia-related co-morbidities (aspiration, upper urinary tract infection, sepsis, multiple stage 3-4 ulcers, persistent fever, weight loss over 10% within six months).

Functional Assessment Staging (FAST) Stages
-

1. No difficulties
2. Subjective forgetfulness
3. Decreased job functioning and organizational capacity
4. Difficulty with complex tasks, instrumental ADLs

5. Requires supervision with ADLs
. 6 Impaired ADLs, with incontinence

7a Ability to speak limited to six words
& 7b Ability to speak limited to single word
7c. Loss of ambulation -
Inability to sit, Inability to smile
, Inability to hold head up
.


************
The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. Mitchell (2004) developed and then validated the MRI by examining data from over 11,000 newly admitted nursing home patients. Among patients with a MRI score of over or equal to 12, 70% died within 6 months (mean survival time not reported). Compared to FAST Stage 7C, the MRI had greater predictive value of six month prognosis.

Mortality Risk Index Score (Mitchell). MRI is
p
oints system based on risk factors:


Complete dependence with ADLs
1.9; Male gender
1.7; Cancer
1.6 Congestive heart failure
1.6; O2 therapy needed w/in 14 day
1.5 Shortness of breath
1.5; less than 25% of food eaten at most meals
1.5; Unstable medical condition
1.5; Bowel incontinence
1.5; Bedfast
1.4; Age over 83 yrs.
1.4; Not awake most of the day
1.4.


Risk estimate of death within 6 months

(based on NH residency)
Score Risk %

0 8.9

1-2 10.8

3-5 23.2

6-8 40.4

9-11 57.0

= 12 70.0

The other thing is that once they go on hospice, the rules are pretty strict on seeing doctors. They pretty well have to be seen by the MD’s affiliated with hospice. If she goes to see her old MD or you take her to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit, hospital or ER cost. Everything medical has to go thru the hospice.The NH get this but this can be a real issue for hospice at home situations. Often this can be hard for family to go along with but that is what the hospice system is about. Good Luck, none of this is easy.
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I had planned to provide my mom with dignity also but now it is impossible. Dignity is not sobbing and shaking all day and begging to die in front of 25 strangers all day and smelling from a wet "pad" no matter how many times a day it is changed by caring aides and dribbling applesauce down your chin because your hands are shaking so much you miss your mouth. She gets her hair done every Thursday at a salon in the facility, she wears clean street clothes every day and cries because she can't remember how they got on her body. As for ativan...she gets so much medication she can't make her lips move to form a word. Ativan didn't work to stop her crying so they switched to klonipin 2 times a day on top of trazodone. They have tried every drug to the point that she was hallucinating and couldn't stand up and she ended up in a psych ward for 15 days. I realize what your "plan" is...it was my plan too. My point is: those plans go swishhhhhh out the window when a person gets to the point my mom is at. We have been doing this now for 2 years...this NON-existent "quality of life" the dementia patient has to endure day in and day out. It's the "ground hog day" from hell. Trust me.
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I am caring for my mother in my home. She is in the last stage of dementia and is on hospice. Hospice has been absolutely wonderful and has helped me with this question. The goal is her comfort. She is on oxygen for a lung issue and I still give her a vitamin (keeping up her nutrition helps prevent pressure sores which are very painful). She takes a med for her reflux (again, for her comfort), and a cough syrup. I have meds for her mental comfort as well and a sleeping pill. I have morphine on hand for when we need it. One of the biggest benefits of hospice is the nurse being available for questions such as this and to discuss any concerns I have. She moved in with me after being in a nursing home until money ran out. No-one thought she would live this long, but she has been here nearly a year because she improved and stabilized for awhile, but she is again going downhill now.
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Ohio, can you call in a different doctor for another diagnosis? It sounds like One Flew Over the Cuckoo's Nest over there. She should be in a "calm and comforting" environment, and they are out there. Have you called the Ombudsman for the care facility? There is no reason for her to be suffering so. So sorry for you both.
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Hospice is a huge help
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Ohio, sometimes the facility caregivers are really wanting to introduce hospice care into a situation but are afraid to mention it (and in some religious-based facilities, are barred from mentioning it) to the family. It sure sounds like they could help. Have you asked directly for a hospice consult? If you don't get one, ask the reasoning behind why not. My heart goes out to you and your Mom. She clearly raised a loving and compassionate daughter.
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My heart goes out to you, Ohiodaughter. You are facing what all of us caregivers of demented loved ones dread. Not all persons with dementia go through what your dear mother experiences, but we all know it is a possibility. And no plan in the world can ensure it won't happen to the one we care for. It sounds like her medical providers are trying hard to come up with something to ease her anguish. Keep doing your best; it is all any of us can do.

And I know this sounds trite and impossible, but please try to take care of yourself, too. It is what your mother would want.
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To LindaGS: I hear you sister....I am so ashamed to admit that when friends of mine lose their parents "naturally" and peacefully and quickly I say under my breath "Do you even know how lucky you are?" I often think this mental torment is worse than any cancer. Cancer has medications to control pain and it has an END.
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I Just had the HEAD nurse from the "dementia care assiisted living facility" call me to tell me that they are doing a UTI test for the millionth time (which in our case has been negative every single time) due to our mom's agitative state and her incessant "scratching" and "wiggling"....and I was informed by her that since our mom has never told any of the staff " I just want to go to sleep and never wake up" or "get me out of here right now"...that our mom is "PLAYING US". Good thing I can't jump through the phone line right now.
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