My mother is 80 years old. She has had Alzheimer's for at least 10 years and has lived in a nursing home for 14 months.
In the past 3 months, she has developed really bad aphasia and in the past 2 weeks she has started wetting herself. My mother becomes belligerent when you even suggest bathing or changing clothes. Therefore the staff at our lousy nursing home don't do it most of the time. Before you advise me to move her, I want you to know that's in the works, but it's hard to place a resident with "behaviors," which is how they've had to document her to cover their own negligence. And nursing homes aren't exactly falling all over themselves to accept someone who's already on medicaid and has a tiny social security check. Oh, and I'm darn lucky to have her in a place where she has a private room, is not beaten up, and is relatively safe. I'm in NY. The nursing home situation is not good. (And yes, I've considered other states.) I have discussed the bathing and changing issue with everyone from the aides to the nurses, charge nurse, DON, social worker, and yes, even the CEO. I hit a stone wall with every single one of them. Their response was to both threaten me then follow through by beginning to send her to the ER for the slightest infraction, which they let slide, or handle, in other residents. They said she's a "danger to self and others" and they use loaded words like "abusive to staff" in their paperwork to the hospital. (The hospital staff tells me they're not doing their job.) So that's their game, I am looking for better for my mother, but that's not the answer I'm looking for here.
Here's my question: Mom has aphasia. She gets frustrated because she's not understood. She's having accidents (#1 and sometimes #2). It doesn't seem to bother her that she has soiled herself. She has forgotten most of her life. Seeing her like this, a scared angry woman with urine stains on her clothes, a woman who opens her mouth an gibberish comes out. She pleads with her eyes to be understood, but we are not able to understand her. I understand her more than most. I see her relegated to that tray and table at the nursing home while all sorts of horror goes on around her, from the screamers to the aides complaining about their jobs. I feel so sorry for her. I know the woman she used to be and I know in my heart, for a fact, that she would NOT want to live like this.
She takes Aricept, which breaks down the proteins and tangles in the brain of a person with Alzheimer's. It allows that person to function better, longer, but ultimately the disease will outpace the affect of the Aricept and the person will die of Alzheimer's.
I am considering asking the NP to stop the Aricept so the brain damage will kill her faster. I feel like a monster putting it into those words, but that's what I mean. It's beginning to feel like forcing a terminal cancer patient into rounds and rounds of chemo that's only prolonging their suffering. Nothing will bring my mother back to the woman I have known. She's so unlike herself now that I'm beginning to get these flashes of thoughts that she's not even my mother. Please help.
I hope this question makes sense. I love my dear mom more than life and owe it to her, always, as much as I can, to do what's right by her. So would she suffer more with the Aricept or without it. If it is stopped, our previous neurologist said she will "tank." I wonder if that would be worse than prolonging her life....
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However, I don't know if D'C'ing Aricept would actually bring death sooner or merely fail to moderate the complications of dementia.
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. dementia sufferers are confused and rightfully upset , but i have also seen by personal experience that they can be quite disconnected and content .
I agree.
I think what Pam said is the way to go -- trying to reduce the anxiety and giving as much comfort as possible. If she doesn't like wet baths, is there someone who will give dry baths? Or would she also fight against them? My father would tolerate dry baths better than wet ones, so we used dry mixed with some wet when it was needed.
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