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My mom with dementia is being discharged from hospice because the company says she is stable in her symptoms. However, she has lost about 20-30 pounds in three months (weight was not ever taken while she's been on hospice) but at her lady appointments I see her decline in weight, from having skin on her bones to looking emaciated, is on a pureed diet due to pocketing food/choking hazard, has to now be held and can barely walk, cannot walk on her own, has to be in a wheelchair to safely go anywhere, completely incontinent, etc. I don't understand why they are taking her off hospice when she needs it the most. She will have to go out of her place to see a doctor now as she is declining. It is so hard to safely get her to and from the lady doctor as it is. I always need help from the nurses to get her in and out of the car, among other things.


I'm concerned. Should I be? She has been on hospice so long that I have a hard time imagining her without it. She was bathed more and had nurses/a doctor checking on her at her place, and now she won't have that.

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Why has Mom been on Hospice? Does she have a terminal illness? Kidney Failure, Congestive heart disease, cancer of somekind? Dementia does not require Hospice. My Mom was not placed on Hospice until she was actively dying.

I agree, try another Hospice agency.
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Weight loss is a sign of decline.
I would appeal the decision to discharge her from Hospice.
The CNA should be taking MAC (Mid Arm Circumference) Measurements.
The decline in muscle as well as fat indicates weight loss.
But they should also have been monitoring how her clothing fit as well. I am sure that a 20 to 30 pound weight loss over 3 months would have been noticeable.
I have always said that documentation with Hospice is important. You may notice declines that the Nurse or CNA do not notice. things like
Increased sleeping
Weight loss
Not eating as much
Needing help with things they did not a week, a month or more ago.
Falls
And any other things that just "seem" different.

You should have a chance to appeal the decision to discharge. But if not or that opportunity has passed you can contact another Hospice agency and let them evaluate mom.
One of the most difficult things about the discharge is that you lose the support, the equipment and the supplies that get delivered.

I will say though you mention doctor appointments. Generally with Hospice you forego other doctor appointments and Hospice becomes your Medical Team. So I have to ask why are you taking mom to the doctor? She should not be getting "treated" by a physician other than the Hospice doctor that is assigned to her Team.
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Roseformom Nov 10, 2023
Thank you so much! I'll be appealing this tomorrow since I have the day off.
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How often is your mother going to the doctor?
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Roseformom Nov 9, 2023
She hasn't gone to the regular doctor due to hospice. She has to go to a specialist every three months due to her prolapse, sorry TMI, otherwise her organs come out.
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"It is so hard to safely get her to and from the lady doctor as it is. I always need help from the nurses to get her in and out of the car, among other things."

You use the term "lady doctor" and "lady appointments". Might I ask for clarification as to what that means?

When my mom was in hospice, she didn't go to **any** doctor appointments. It was one of the biggest selling points in favor of starting hospice. It almost sounds as though you are still taking her for routine check-ups - ie. preventative care - and once your LO starts hospice, those visits are supposed to end. May I ask why it appears you're still transporting her to and from doctor appointments?

Our hospice company was very clear in their instructions that once on hospice, routine care (preventative care) would stop. We could come off hospice by choice at any time we wanted to seek that sort of care and go back into hospice, but while in hospice, mom's care came from the hospice people. No "outside" appointments, for lack of a better term. Might this be a reason they "graduated" mom from the program?
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Roseformom Nov 9, 2023
Mom has a pessary, so she has to have it cleaned and changed, or replaced every three months. Only the urologist and gynecologist at her hospital know how to do it. Hospice does not have a doctor who is able to do it, so I have to take her in. She has bladder and uterine prolapse, so it's necessary, or her parts inside hang down outside and it's not comfortable for her. The hospice is discharging many people at my mom's place.
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its no fun . Glad you’re close by to her. That helps. You pop in any time.
bring her a milkshake with protein powder or ensure. Play her favorite music.
keep talking with the doctor .
You’re doing the best you can.. hang in there!!
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Rose, your mother has been ‘on and off hospice’ for 6 YEARS since 2017, and continuously for the last 2 -3 years. Clearly she is old and not doing well, but she is ‘a stayer’ and they think she seems relatively stable now. The Hospice provider may have limited funding, and may be under pressure to provide the service to people who are in more immediate need. Hospice is not funded to provide what amounts to regular age care.

I sympathise with your distress that this helpful resource is being withdrawn, but it seems appropriate to cope for now. You can apply again when and if your mother gets closer to the normal ‘life expectancy of less than 6 months’.
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Rose
I would call a different hospice for an evaluation. It could be your moms hospice company has made some mistake or is manipulating the system. How old is your mom? How long has she been on hospice? Do they seem to have had turn over or a change in management? I have no idea why they released your mom but I agree something seems off. A lot of different things can affect why a company does something besides the condition of your mom. I hate to say that but it seems sometimes things don’t add up. You need a better answer than you’ve been given. They will prob come back and put her back on and get paid a bonus for putting her on hospice or some such. They don’t always find it necessary explain themselves. Would serve them right If that’s the case for you to go to a different company.
My DH aunts hospice measures her arm to determine weight loss but her NH weighs her. Call her doctor and ask her to order home health and find one that offers home health as well as hospice. That way she can go from one to the other as she qualifies. I think I understand she is in an ALF now from a previous post. Let us know what you find out.
My DH aunt has been on hospice for several years for dementia.
On another note, it’s a good time to get things done you may have put off because she is on hospice, like therapy. You could ask her doctor to order an evaluation to see if it would help her get around a little easier.
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97yroldmom Nov 9, 2023
I see you are familiar with this as she had rehab after her fall. I saw this after I posted. Good luck and do let us know what you find out.
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Are you sole caretaker?

hiw long has she been on hospice?

my mom graduated out of hospice 3 times before going to Heaven.

ususlly hospice has an expiration date… 3 months or 6 months ? I forget. It’s either the policy or insurance police.. end of life treatment..

kindly ask her doctor again to have her evaluated for palliative or hospice care in a week or so.

they cannot turn you down if you ask them. They should evaluate her again.. ask kindly.. you can state she’s not well on her feet. Etc..

I had my aunt and mom’s taxi cab driver.. only him.. he knew how to handle them and his van was big enough for the wheel chairs. Yellow Cab Wheelchair access van.

Do get adult Bath wipes
Gait belt?
Anyway.. don’t give up.

my friend sent me some endure. I blender it with frozen berries and extra scoop of powdered protein and some fresh frui eith a few ice cubes. It’s good
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Roseformom Nov 9, 2023
Yes, I'm sole caretaker and my mom is in memory care close by. My sibling is in a state far away. Mom has been on and off hospice since 2017. She has had hospice continuously for about the last 2-3 years, except for one time for a few days when she had to go to the ER and rehabilitation for a fall. I'll ask for a reevaluation and will look into the yellow cab wheelchair van for her appointments. Thank you so much for your advice!
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