Ending Medication

NUMber2

My mom was taking 5mg of donepezil- a very small dose. 10mg gave her terrible hallucinations and 5 mg just gave her various stages of bad dreams. (That's why she was in 5mg)

She absolutely hates taking medicine and I hated her taking it unnecessarily. The doctor, actually 2 doctors, suggested that 5 mg probably wasn't doing anything for her anymore. It was suggested that we try stopping the meds and see how she acted and felt after ~3 weeks without taking it. She felt fine but I CAN'T TELL if she's acting differently.

Is it the lack of donepezil or did I just catch her on a bad day?

Is it the lack of donepezil or was she always going to have difficulty remembering her pervious caregivers after 6 months of being away from them?

Is it the lack of donepezil or has getting dressed always been this difficult, especially when she dresses in layers to keep herself warm. Or did I just neglect to notice this before?

Has this happened to anyone else? If so, what did you do about it? Did you just stay off of the medicine or did you go back on?

Thank you! NUMber2

Quilting brings calm

My Mom is also on 5mg of donepizel. She was on 10 for a about 3 months but the side effects were too much ( bowel issues). So she was dropped back to 5mg.

The nurse at the AL says she can tell a difference in Mom after being dropped back down to 5mg. More anxiety and confusion. I can’t tell that much difference. She’s been anxious as long as I’ve been alive. There is also the fact that she’s been stable cognitively for 4 years. She’s only been on Donepezil for about a year and a half. I would expect her to have more anxiety and confusion by now, whether she was on the higher dose of medication or not.

Her neurology NP felt we could keep her on the lower dose if the side effect got better, and it did. So we have no current plans to take her off. Whenever we do, I’m sure the AL nurse will think changes have occurred.

mommyandme (m&m)

My mom was on Memantine (Namenda) which is a little different I guess, maybe less side effects, but not sure. When I tried to titrate her off of it I saw subtle changes, not as able to follow simple commands like how to take steps for instance. I put her back on the usual dose and things were “better” again. The second time I tried to remove it, same result. Maybe Donepezil (Aricept) has very subtle benefits too? It’s a guessing game.

NUMber2

Thank you! We see the NP on Thursday so I'll speak with her. I keep asking my mom how she feels and she says she feels great. I ask her if she'd like to go back on the med and she says no. The behaviors are so subtle that it is all a guessing game- you're absolutely right!!

Take care!

Stan2

My DW was first prescribed Donepezil 5mg and told if she could tolerate it she should increase to 10mg. She did fine on the 5mg and was then told to stay there and not increase. Later, with no change I could see , it was recommended that she change to 10mg. We balked at this and were told to stay at 5mg( I failed to mention this was 3 different neurologists). Later still , my daughter and I discussed that we both saw increased short term memory loss and we decided we should up the donepezil to 10mg. It has been about 3 months now and couldn't swear one way or the other whether it has helped, and I am with her 24 hours a day. The bottom line is that we are all just trying to do the best we can and hope for the best. You don't need to be an expert , you only need to care. I wish you the best.

NUMber2

Thanks!! ❤️

mommyandme (m&m)

https://alzconnected.org/discussion/comment/194925#Comment_194925

How’d the visit with the NP go?

NUMber2

https://alzconnected.org/discussion/comment/195343#Comment_195343

Thanks for asking (m & m)

Well, the day started off with clothes on backwards and some confusion during a phone conversation with her favorite grandchild. ((Which concerned the grandchild) But my mom insisted on not talking about donepezil ... "give it one more day". So we didn't talk about it. 😞 However come Saturday she had no idea where she was and was frightened. The AL facility didn't know how to handle it- they aren't equipped for her level of care. I took her to the ER to make sure it wasn't a UTI and it wasn't. This convinced her that being on it for the rest of her life was important. She'll start again on Monday.

M1

Number2, sounds like she'd be better off in a memory care unit. Is there one at her current facility? Wouldn't all of this be easier for you if she was getting the right level of support? I have to wonder if that's not contributing to your struggles......

NUMber2

https://alzconnected.org/discussion/comment/195394#Comment_195394

I'm hoping the Donepizil works again... if not, then memory care is where she'll have to go. But I HAVE to try this for her!!

Emily 123

Hi NUMber2,

I agree with M1 and posters in other threads--I would not pin your hopes on the donepizil too much--your thinking about MC is a good step.

It's easy to underestimate the level of care needed until you have to be the one meeting those needs, and we very much tend to overestimate what our person's capabilities are at first.

I think if you could get her in to MC a lot of what's stressful would be resolved and you could go back more to being a daughter, and less being a caregiver. Generally MC's have on-site podiatry, an in-house healthcare provider care, sometimes they have a dentist that can come in, etc.