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.
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
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.
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.
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.
"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
I think palliative care at this point is the right thing to do. It is time to help her by not prolonging her misery.
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.