Follow
Share

I switched my mom to a pallative care model. Intellectually I know its the right thing to do at her advanced stage and stopping Mementine is common. She was like a car with an 8 cylinder engine with only one cyclinder working. We took her off the drug and now 3 weeks later her memory is a little worse. It could very likely be the Mementine. Naturally I'm second guessing this a little, to continue the car analogy do you continue to do tune ups on a car with only one cylinder out of eight firing?
The drug wasn't curing her and she was getting worse regardless, but the other day she stopped recognizing my brother as her son but as her friend. That said, even with the drug she was having that same issue with me.
For those that got to this stage, did you stop the drug or continue? I'm also of the opinion that she's suffering from the disease and her wishes were not to prolong it.

Question for anyone who wishes to join the thread,
a little survey really
What has been the length of time from the falls starting in your loved one to late stages
and if your loved one passed how long was your journey in years in total?

Mom diagnosed Oct 2022
Falls began July 2024
No mobility from Oct 2024
Palative bed side care Dec 2024
1 year 5 months bed side care ..

Moms 80 next February.
Mom just lost herself once we lost dad in the pandemic to his brain tumour they were married 52 years I miss dad everyday through moms journey.
Care giver daughter 7 days a week
Helpful Answer (0)
Reply to Lulu54
Report

If you decide to discontinue Mementine please be sure that it is done in a slow step down process. Both my aunt and father had been on aricept and Mementine for over five years. We did think that their use slowed the progression of their memory loss. The nurse at the facility where they lived suggested that we stop the Mementine as he was late stage 6 and she was firmly in stage 7. We agreed this was probably a good idea. She abruptly stopped both of their Mementine prescriptions. Within a week my father became very aggressive and argumentative. My aunt went from an even state to falling from her wheelchair and lost her very minimal use of words. They both had a very noticeable immediate decline. I think much can be attributed to not just the stopping but the abrupt stop. When we could find no other way to settle my father it occurred to me that it could be the Mementine. We started it again for him. He slowly leveled out and lost almost all of the aggression. He was still much lower cognitively than he had been but he leveled off. We did not put my aunt back on it and she has also leveled off.
Just wanted to give you our experience to help in your decision. I do think it was the right time to end its use for my aunt only wish we had tapered instead of cold turkey. That nurse is no longer with our facility.
Helpful Answer (5)
Reply to KDScott
Report
Lulu54 May 13, 2026
Bless you dealing with 2 loved ones and yes I thought I'd slowly taper it not just all in 1 go that way I can notice any gradual change in aggression, I wish you well and thank you for your reply take care x
(0)
Report
See 1 more reply
My mom just turned 85. I'd say now, she is at late stage 6, early stage 7. Double incontinent, in a wheelchair.
They put her on Aricept first about 4 years ago. She did okay with it but she wasn't very bad from the disease yet.
Then about two years later, they put her on Namenda (memantine).
For a while it was great! She started doing puzzles with me and I would leave her with word search books and she would do them by herself. Sometimes she would actually get up with PT and walk. She was bright and alert and would sing along during the activities when they had music.
After about a year, she started getting UTIs badly. With each UTI it seemed I lost a part of her. She stopped smiling and talking and singing along. She also started getting these "tics" where she would move her shoulder back and forth like she is listening to music all the time. She would barely look at me and stopped talking altogether. The UTIs got worse and came back more often. By the end of last year, I started researching these meds myself and learned that Namenda actually irritates the bladder and can bring on a UTI faster. I immediately took her off of the Namenda. By then we found she has kidney stones called struvite stones from all the UTIs she's had. The stones hold the infection and each time she goes off antibiotics, eventually she gets sick again because of them. They will not treat them because of her dementia and age so she is now antibiotic resistant.
She still has a "tic" where her right arm moves back and forth. It makes it impossible for her to hold silverware to feed herself, she tries and just quits. It breaks my heart.
I took her off the Aricept this year hoping it would stop the arm movements. It's been a couple of months now and she still has it so I'm thinking it may just be the disease.
Once off the meds, I made sure everyone knew she was to be drinking water all day, I wanted her hydrated since I think this is a big issue with elderly in LTC and UTIs.
She started to perk up after a couple of weeks and now seems like she is better. She will never do puzzles for me again or word searches but she does smile and laugh again now. I think the Namenda helped mom at first but then I think it made her zombie like and brought on the UTIs. If I were to do it again, knowing what I know now, I would have taken her off after a year.
Helpful Answer (8)
Reply to rapidswimmer
Report
Pellen66 May 12, 2026
Sweet loving and attentive daughter❤️
(1)
Report
See 1 more reply
Right now my mom is in stage 7. When she started Hospice they wanted to take her off the Memetine . I thought hard on it and said yes. In the beginning u could tell the difference. Her memory was about the same but sleeping was different and a little more agitated. They gave her something else for that. At this stage the medicine isn’t really going to help. My mom remembers the people that r around her more than others. Sometimes not at that moment but later she will say their name. The thing is try to make them as comfortable as possible. It’s a very hard journey to go through. Sometimes I can see the old her . As times goes on Hospice has changed some of her medications to lower milligrams. Just part of the process. I’m truly grateful for every day with her. I’m learning that at times it’s very hard but God will see us through this. Everyone journey is f different. Sending love and prayers
Helpful Answer (8)
Reply to Kimmiemoon66
Report
Lulu54 May 13, 2026
Bless you, thank you for replying yes we get to see glimpses of our moms as was still in there dont we , all these answers have been valuable to me , only us living the journey with our loved ones know the sad decline we have to wittness. I am sending you love light strength and for your mom peace and no pain, you are brave, we are all brave , I wish for a cure in our life time - take care its alot on you watching over her x
(1)
Report
My husband was placed had been prescribed medicine at diagnosis, dose kowered, then dufferent medicune, then lower dose. With each, all he did was sleep. Could not stay awake, concentrate. But in morning before meducine dose was very alert and responsive. He was able to speak with his doctor, understand issue as he was in mild stage. I questioned the ourpose if a medicine that turned him into a drugged stage when he could still be fully enjoying life. Ended up with medicine with lowest dose for a short while, then none. Because my husband's mind had not gone to stage of not understanding, he chise to go off medicine, enjoy remaining good days since it was not a given, only that it might slow down the alzheimers. He did well for 7yrs.
He had good health otherwise.
No doubt a personal decision with dr advising. But for us, we had 7 yrs he enjoyed and understood and could respond to.
Am sure this is an induvidual decision, no do-overs. Only know my husband said it was so good not having that mental fog and sleepiness.
It is a strange illness. So much unknown, and little positives of a medicine that will do this or that. Side effects known but only it "may" help.
Live it each enjoying the time spent for loved ine and find a good doctor to advise. For sime, maybe the medicine may not nave so many sude effects.
Helpful Answer (2)
Reply to Memories42
Report

Dif med but want to share concerning Premarin/ HRT. Her dr ended this rx in her late 70s causing a big decline in her mind that took ~ 9 months to level out. Hoping she will level out quickly fr dropping memetadine. Take care of YOU, too.
Helpful Answer (3)
Reply to Bellerose63
Report
Lulu54 May 13, 2026
Thank you, bless you for replying mom never took HRT she wouldn't she believed she could get through menopause on her own, sending you and your mom hugs, its such a different journey for everyone thats what makes the dementia diagnosis so hard because their is no cure no 1 quick fix no
"arh yes do this "
moment & all will be good for our loved ones I pray for a cure in our life time. Sending hugs take care of you too x
(0)
Report
Thank you for this - Mom has lost mobility double incontinent , she still knows me , is bed bound now, we feed her coax her to drink , I wondered if Memantine was still a good thing for mom still shes 80 next February , shes on 30mg citalopram and like your mom,because we lost dad to glioblastoma terminal brain tumour in the pandemic she said , while sound of mind No CPR no prolonging her life , if ended up like dad, it was dementia that has taken her brain and not rain tumour but to lose both parents to their brains devasting - both no underlying health both ate real food no fast food both never smoked were tea total , both were fit walkers gardeners so after reading your post and the kind reply I think its time I pluck up courage to ask her doctor if I should trial her off the Memantine a d then lower the dose slowly from 30 mg to 10mg of citalopram but not all at once Im with her 7 days a week 365 so will notice any real change - take care good luck sending hugs to you and your mom, its such a sad way for them to end their lives & the added worry one day it could be us as moms mom my nan passed from it in 1996.
Helpful Answer (5)
Reply to Lulu54
Report

Let it go. The drug wasn't helping much anyway. I think these drugs are largely worthless in the late stages and that doctors prescribe them so that the family can feel that they are actually doing something to help.

I think palliative care at this point is the right thing to do. It is time to help her by not prolonging her misery.
Helpful Answer (19)
Reply to Hothouseflower
Report
Lulu54 May 12, 2026
This answer has helped me care giver daughter to mom with Mixed Al, and Vascular dementia I wondered if its time to stop medication as her quality of life is poor , in bed no mobility not walked since Oct 2024 double incontinent 80 next year .
(2)
Report
The kicker is ... you do not know if the decline was due to taking her off the drug OR if she would have declined the same while on the drug.
I think at the later stages the drugs do little but there are some that there is a noticeable decline, or a change in personality. I think if the change is adversely effecting anyone then going back on the drug is a valid option.
She will decline with or without the medication. How fast the decline would be you will neve know.
Helpful Answer (9)
Reply to Grandma1954
Report
Lulu54 May 12, 2026
This has helped me reading thank you for the advice
(3)
Report
Let it go . You said she was getting worse regardless . It’s a coincidence that she stopped recognizing your brother after stopping the med . She had already been having the same problem with you while on the med, the med is no longer working.
Helpful Answer (11)
Reply to waytomisery
Report
Lulu54 May 12, 2026
Thus has helped me , just got to pluck courage up and decide to contact her doctor
(3)
Report
Ask a Question
Subscribe to
Our Newsletter