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Mom had whole brain radiation 5 years ago. I feel she has developed vascular dementia. I’m not sure what is going on. In April, she was dropped by her aide and fractured her tibia in 3 places. She was placed in a rehab facility, but has never come home due to “cognitive decline.”


No no one can seem to tell me what’s going on with her but did suggest I get hospice involved. So I did. As far as I know she isn't terminal unless they know something I don’t.


Most days mom is up in her wheelchair but very disengaged. Some days I can tell she is confused and speech is hard. She will start a sentence and can not finish. She swallows her meds and regular diet food but will pocket at times. Yesterday, I noticed she was holding saliva in her mouth refusing to swallow it. No food or pills, just spit. She also will take her index finger and tap things, like her food and coffee or her blankets. She doesn’t seem to remember how to use utensils and will pick up her food, like a baked potato, rice, steamed carrots, with her hands.


She knows who I am. And seems aware of her surroundings but won’t hold a conversation with me. Which may be frustration with finding her words? I can’t tell. Although, yesterday she couldn’t talk due to all the saliva she wasn’t swallowing.


Anyone experience this? I just want to know what’s going on and why would they want hospice called in? I have asked both the staff and hospice but I always get the standard, “It’s for comfort care and pain management”


(she suffers from neurogenic pain in her legs).

The inability to swallow her own saliva and pocketing her food are symptoms of dysphagia, the medical term for difficulty swallowing. Usually when they reach this phase there is an effort made to assess them and make changes to the diet, often they need minced moist or fully pureed meals, she may also need to have her fluids thickened. Many of the people at mom's nursing home also needed assistance eating (my mom had to be fed for years because she wouldn't try to eat on her own). Difficulty swallowing can cause more than weight loss, it is also a cause of aspiration pneumonia, which often occurs in the final phase of life.
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Kannie Jan 26, 2019
She has been evaluated twice for a swallowing disorder. they did not find any physical reason for her not to be swallowing and that’s why she’s on a regular diet. They do mince her meat and add gravy to it but other than that she’s on a regular diet, with no thickening of liquids.
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Kannie, so sorry you are going through this phase with your Mom. My Mom had something like that herself.

What could be happening to your Mom is what is called "failure to thrive". My own Mom was going down hill fairly quickly and not improving at all. Mom was able to talk and once in awhile would make sense, other times not. She couldn't feed or dress herself.

I thought my Mom knew who I was, as she would say my name when she saw me [her eyesight was to a point of being almost blind]. Then later I noticed she was calling her Aides by my name.

My Mom also had pain, it was her back, as she was now a meer 85 lbs and laying in bed was so painful for her. The facility tried a wheelchair but my Mom's brain was telling her she could stand and walk, when she could no longer do so. Lot of falling on her part.

Then the long-term-care facility called my Dad and I into a meeting. Time for Hospice. This was the first time I ever heard that term, and the literature Hospice gave me sounded like the right fit. And I was right. They were an extra set of eyes and ears for my Mom. And a month later her passing was so very peaceful.
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Let's be clear, Hospice is about end of life. Yes, there is pain management and comfort care, but it is an acknowledgement that further treatment options are being abandoned and the focus is to ease pain and suffering in the final months of life. If you don't understand why they are recommending hospice then you need to ask that they spell out what they are seeing that makes them think she has declined to that point. Almost all the people who come on to the forum that have negative comments about hospice never understood what hospice was or why their loved ones were eligible to receive it. Based on your description of your mom I can guess why they feel it is time, but that would only be my guess, not a true prognosis. Educate yourself about end of life with dementia, and don't agree to anything until they explain it in a way you are comfortable with.
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Kannie Jan 26, 2019
I asked when I did all the paperwork. They just said that since she was declining any further treatments she qualified along with the “cognitive decline”

mom wont go to a neurologist. I tried. As her POA I could just do it but I am trying to respect her wants. This was stated by her before she declined.
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You need to get a neurologist involved. Tell the DON that you want a consult. If he can't come there take Mom to him. The holding saliva should be brought up to the DON. Maybe Mom is having problems swallowing or its just the Dementia. The doctors involved with rehabs/nursing homes are General Practitioners. They know a little of everything but not alot of anything.
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JoAnn29 Jan 26, 2019
Meant to say " not a lot about any one thing". They are not specialized.
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