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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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Wow! I stumbled onto this question by accident and the answers here are exactly what I need right now! I am so thankful to see in writing advice that is in line with decisions that I am trying to make as I write as to the direction to take care of nicer ng my mother. My mother has really bad dementia, stage 4 kidney failure, a bleeding disorder and host of other conditions controlled by meds. The latest med added is causing severe bad side effects which will hasten the kidney failure and the treatment for that will cause the bleeding disorder to get worse. A life or death catch 22 for a 86 year who is still waiting for her husband.
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I just wanted to say Death with Dignity here in Oregon is not as easy or simple as some might think. This is especially true when it comes to older folks and dementia. First, the person asking for Death with Dignity must be evaluated and deemed mentally competent by two psychiatrist. Then two medical doctors must agree that the individual is terminal - no chance of recovery and that they have six months or less to live. Personally, I am not a fan of suicide but I also do not consider Death with Dignity in that same arena.
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Christine - taking her off the meds probably won't make a difference.

This is a huge grey area for care for the elderly. They are too into their dementia to do whatever for a Oregon style early death choice.

But it does provide for us to make changes as needed for our & our own families concerns as we age. those of us in all this right now (NH, hospice, medicaid) really can be the forefront for supporting a change to what the current system is. There is going to be a sea-change in what elder care is as the current system is just flat not financially supportable by the states for the oncoming tsunami of baby boomers. Personally I do not ever want to find myself like my mom was being bedfast for 18 mos on hospice in a NH and not in this solar system 1/3 of the time. & my mom was a easy NH resident as she was social & compliant for her care.
So please please think about what you would want your own aging to be and do whatever to support candidates and organizations and changes to laws that share that viewpoint.
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cwillie - I guess there is no predicting the outcome, is there? A lot of the stopped meds make complete sense - moms dr had her on a bunch of vitamin supplements which just seems silly for an 89 yr old woman - especially since mom isn't eating much and the pills are probably sitting like little rocks in her stomach causing an upset tummy. Then there was a cholesterol pill - mom never had a cholesterol issue but it was suspose to help prevent a stroke. We agreed to keep all the "mood" meds recently prescribed by a geriatric psychiatrist as its made a world of difference in changing mom from an angry, mean, hateful woman - whom no one wanted to be around - to a pleasant, agreeable person. Pain pills were up'd of course but mom has to ask for them - which she won't remember to do unfortunately. Sooo - who knows? If there really is some sort of "plan" for each of our lives, it certainly makes you want to be let in on it. At times like this one certainly has to wonder.
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Oh Christine73, I feel for you. It's so hard to deal with nursing home personnel that don't seem to want to do what they're supposed to do. Nursing home patients needs to be treated with dignity and respect. I, too, have spoken with all the staff and higher ups (DON, etc. etc.) and it's just the same old, same old. They have their routines and they don't want to change ANY of it. Many of the aides are disinterested (although some do care, so I don't want to paint a broad brush), work at the pace of a snail, don't have cars so they don't have reliable transportation to their place of employment, so they "call off" and leave whatever staff left from the previous shift irritated that they're asked to work another shift, so they're not exactly thrilled.

It would be wonderful if "Memory Care" facilities are staffed with highly trained individuals who know how to deal with Alzheimers' patients outbursts, behaviors, etc. without medicating them into a coma. But alas, those types of facilities and staff and almost non-existent.

Tireddaughter66 gave an excellent answer. So many of these meds for Alzheimers just really aren't that effective, especially in the later stages of the disease. Discontinuing the Aricept more than likely may not have ANY affect on her. Perhaps getting some medication to calm her without making her drugged out would help with her fears and belligerent behavior.

You are so right that you just can't change facilities on a whim especially when someone is on Medicaid and is vulnerable. No other facilities want such a patient so the "we have no beds" excuse is commonly used. Pamstegma said it best. Comfort care is what she needs. However, if your Mom is physically in pretty good shape, I'm not sure she's ready for Hospice. But do call them in for an evaluation.

That's the issue with my Mom now. She isn't at the stage of needing Hospice yet and it is horrible to try to deal with the nursing home staff to get them to change her (she's incontinent) at regular/proper intervals as she is a 2-person lift. You can't find ONE aide around, much less TWO, so she often sits in her urine/feces until they get around to her. It's horrible seeing the indignity of it all. I wish I had unlimited funds as I would do everything in my power to have her come home with me until the end and I struggle everyday knowing I can only do so much.

So, my thoughts on letting your Mom die sooner? I don't think taking her off the Aricept will hasten her death. You know what she would have wanted. You know in your heart you're doing your best for her. I would consult with the nursing home doctor and your local Alzheimer's Association. I'm not sure your Mom will "tank" as the neurologist stated. I think she needs comfort care at this point to ease her anxiety (with some other meds). I wish I had more to offer but I'm sending you prayers and {{{HUGS}}}.
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Rainmom, when they first took away most of my mom's meds I waited for the massive stroke I knew was just on the horizon. Today the only prescriptions she takes are propranolol, which is a heart med but also eased her migraines and essential tremor, and levocarb for her parkinson's/parkinsonism. She's still going and it's been years.
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I know how you feel. Yesterday I met with a social worker and an intake nurse for my mothers heath plans hospice program. We all visited with my mom to determine if she "qualified" for the program and to try to determine what my mother wanted. Sadly, it was impossible to tell if my mother understood what was going on, let alone what her wishes were regarding her future care and quality of life. So it was left to me and the two hospice workers to make that decision. In some ways the burden was made lighter for me by way of their clinical accessment - and yes, mom met all the requirements. So finally it was my decision to make as moms medical DPOA. What it came down to for me was remembering the woman my mom use to be and what her wishes were before her mind became broken. My mother has a very strict and detailed advanced directive - it barely allows for her to be picked up off the floor and made comfortable in a bed. And, many times in the past few years my mom has said "I'm ready", "I never wanted to live this long", "don't be sad when I die, I won't be" etc. So I signed the papers and we began deciding what medications to stop. I am concerned about stopping moms lasix - when hospice did that with my dad he had an awful time breathing which was treated with pain and anxiety meds. I didn't want to go through that again with my mom. However, the hospice team assured me if any discontinued med causes my mom more pain or distress we could start it up again. That made a big difference for me. I still am feeling sad and a little depressed regarding this first step along a new path in this hellish journey but I really do believe it would be the same choice my mother would have made- if she were able.
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PS: Akdaughter: I posted my answer on your wall-
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My mother worsened CONSIDERABLY while on Namenda. She fell 10 times in 2 months. She was no longer able to process other meds. Her daily 1 ounce of Vodka caused her to be legally drunk for 4 hours. I know because she fell, cracked a rib and ended up in the ER where a blood alcohol level showed intoxication. That is the WORST drug ever! She's now reading, remembering conversations, etc. We've added 1 tablespoon of Coconut oil to her decaf coffee every morning, so it's hard to know what is causing her improvement. The neurologist said that Aricept only has a positive effect for a year, so in my humble opinion why use it longer than that? Another friend who lost her mom to ALZ said she also saw marked improvements OFF all ALZ meds.
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I think this discussion applies also to younger people with terminal diseases, or multiple diseases that destroy quality of life. Metastatic cancer is one in this category.
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Akdaughter, well said, "I don't see this as helping her die sooner, but rather as not making her suffer longer"

I agree.
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I took my mom off all meds and she has improved drastically, to the point of being able to read long novels again, etc. Clearly, your mom's condition is far worse. I agree with Pam Stegma. Moderate to severe dementia qualifies a patient for Hospice. Ask her MD what measures can be taken to decrease anxiety and angry outbursts. I wish you well as you navigate the horrid trajectory of this incorrigible disease.
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Christine, I am also thinking about this. My mom is moving from Assisted Living to Memory Care next week. She is an angry, frustrated woman who wants her life to be like it was 40 years ago. I plan to have a meeting with her provider (a physician's assistant) and discuss what medications can and should be discontinued. Over the past five years several meds have been added, and none discontinued. She is on Namenda, Aricept, a statin, a blood pressure med, an antihistamine (she complained constantly about having a cold), a couple of other prescription meds and a host of over the counter stuff. She is 89 and has no short term memory. She is starting to have trouble forming a sentence. She has expressed a wish to die over the years, but I don't think she is even capable of forming that thought anymore. Who knows, maybe discontinuing meds will actually improve her functioning. Maybe some of the meds, or a combination of the meds, are doing her more harm than good. Like Garden Artist said, it may be more kind to not prolong her decline when she has very little quality of life. I don't see this as helping her die sooner, but rather as not making her suffer longer.
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Hello, I could have written your post the situation is so similar to my own. I did remove my mother off all her medication and nothing happened. I eventually, through the doctors suggestions, had her put on anti-depressants and anti-anxiety medication which have helped her tremendously. She is no longer abusive, combative and uncooperative. When I visit now I can actually get her to smile. She is much happier and more content which makes it easier for the staff dealing with her and for myself as her sole caregiver.
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Lizdevine, good point. Her physical health is excellent. Ironic, almost everyone else in my family died in their 60s, a few in their early 70s. My mom overcame breast cancer, ate right, exercised, and this befalls her.
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Since no one knows your Mom like you do and you believe and more than likely kniw in your heart that she wouldnt want to live like this, then I would ask if Hospice can step in and if that would be appropriate. Towards the end for my mom, hospice decided what meds to stop and what meds to keep taking. Hospice in my area takes NH patients as well aa home bound patients. The question being, how is her PHYSICAL health? If her body is strong and she is going to stay with us for a while, months, or even years, then stopping the drug may not be good idea. Very difficult and stressful, so sorry.
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i sometimes think that dementia is a reprieve from the reality of decline and death
. dementia sufferers are confused and rightfully upset , but i have also seen by personal experience that they can be quite disconnected and content .
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Yes, get with her doctor about taking her off the Aricept. It will probably be done in 2-3 steps so it doesn't shock her system too badly. Aricept is not useful in late stage dementia, so there is really no point to it. It helps some people in earlier stages, but is generally not recommended for advanced stages.

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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You may also find that stopping the Aricept does nothing at all. No it won't kill her to stop it. Medicate her anxiety and depression, modify her outburst, because emotional pain is just as agonizing as physical pain. Comfort first. Even if comfort shortens the days left, comfort first.
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Sorry, this must be horrifying for both of you.
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Helping her die sooner can be viewed alternately helping her escape the prison of her mind sooner, as helping to relieve her from more suffering. I see no benefit in prolonging a life that's not worth living. While some may think that it's necessary to keep her alive as long as possible, I would see your D'Cing a med that's prolonging her life as an act of kindness, perhaps the best thing you could do for her under the circumstances.

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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