He has been on namenda and aricept for 20 years. A palliative care doc advised me to wean him off of these two. Famimly doc says ok, but his condition will deteriorate a lot faster. He is functioning, but ADLs are slipping. He can’t read, can’t drive, won’t shower, wears dirty clothes, won’t leave the house.
Should he come off these drugs or not? Now it seems like a moral dilemma.
Our family chose to continue dementia meds (rivastigmine) even when Mom was on hospice in order to prevent cognitive decline, and in her case we feel it was the right decision.
You could also take him off one of them, see how it goes, then take him off of the other one. That would be the conservative approach.
Perhaps talk to a pharmacist and see which one the pharmacist would discontinue first.
Mom was on those drugs for about 16 years. I ended up taking her off of the drugs when she got chronic UTI's. One of the side effects was urinary issues on one of them. The UTI's stopped when taking her off. We saw no change after we took her off of the drugs and she lived another 4 years after that.
You could always try taking him off (I'd do a taper) and evaluate and put him back on the drugs if you think you need to.
Your husband is dying because of this horrific disease, so why would you want to prolong the inevitable anyway?
As I read your question and backgrounder, I understood your situation as NOW your husband is 15 years sober. Otherwise, how on palliative care, not driving, diminished ADLs is he getting his alcohol?
(I’m thinking that with the diagnosis news, your husband was completely depressed with his terminal situation and how it would affect you and your relationship and he turned to alcohol to “ease the pain” which then depleted his B12… and all of the rest…)
Thinking that already your husband has undergone a battery of blood and urine tests and that his vitamin deficiencies, such as serious lack of B12 caused by years of alcohol consumption, (which destroys the brain and worsens symptoms of dementia) have been addressed.
Regarding Namenda and Aricept, in my experience, when my husband was taken off of both Namenda and Aricept after 8 years, there was no noticeable difference in his brain function. However, when he was taken off of those meds, he was given a very low dose of Zoloft to ease his depression and continue with B12 (METHYL not Cyanide binders), and D3.
if your husband qualified for palliative care, then listen to them. Trust , but verify. This is what you are doing now. I applaud you.
Your husband would never have wanted this life and you don’t either.
there will be moments where you don’t even think that your husband has dementia, he is spot on and clear. Just like that Nicholas Sparks The Notebook. Because your husband really still is inside.
And then, it all disappears. What???? Why? A true rollercoaster of emotions and reactions.
And yes, make certain all legal and financial areas of life are in order or in process.
I hope that this helps in this heartbreaking journey.
My condolences on your situation.
That will be helpful.
Really, in general, and in terms of advice, you should consult legal experts (Attorneys), Medical experts (docs) and financial experts (financial concerns) for questions in those fields.
You are new here. You won't find doctors, attorneys and financial experts on this forum, just a bunch of caregivers. So do know that your discussions with your doctors about their reasons to give or withdraw medications will be crucial. Also not easy.
There is really no cure here.
You are looking to hope to stop progression being rapid and you are looking to relieve symptoms.
Again, Welcome to the Forum.