Has anyone cut back on Alzheimer meds?

@lost55, this is such a good question. It might be a good idea to review her medications with the neurologist, including her medications not specifically for Alzheimer's dementia. As things change, so too may her medication needs or metabolism. I say this as a non-medical professional, but rather from experience with my aunt, who has Parkinson's. We also reviewed the time of day for taking various medications and reviewed the with/without food requirements, etc.

As you prepare for an appointment, I might suggest writing down her behaviourial patterns. That information might be helpful. If there is a long wait time until you can get to see her doctor, you might also have a chat with her pharmacist. Pharmacists are very knowledgeable, especially with drug interactions and reactions. They might be able to provide information about the behaviours you're experiencing and with that information help form questions to ask the neurologist.

@colleenyoung
My charted the doctor regarding meds adjustment. Advised of the recent behavior. Waiting for reply.
Have had two wonderful days (nights) in a row without delusions!
Afraid to breathe if you know what I mean!
Made my mind up that I will no longer apologize for things I didn’t do or take or hide on purpose.
It does not change her view and she just doesn’t believe me . So instead of losing my temper I will let her rant during the times of craziness. I, (we) all have to respect ourselves and our own health as caregivers. If we buy into the accusations and delusions we stress ourselves to an unhealthy level. We need to brush off the hurtful accusations and keep ourselves in check.
I’m going to give it a real effort.
B

Interesting subject. My husband was put on nubeqa about 6 months ago he started with 300mg once a day after a month the dr increased it to 2 a day. About a week ago we were in bed and I noticed he was shaking so bad it woke me up. He was just staring into space like he wasn’t there. I mentioned to my doctor that I though% he was having a seizure since that is one of the side effects rare but still one. He took him off the, for a week and said he could now go on them again I mentioned one a day for now and he agreed. I asked if there were any tests to check seizures and he said that he would have to be admitted to the hospital. Meanwhile he had an appointment with his neurologist who was concerned and he is giving him a test tomorrow it’s something he puts on his head and they can check the waves in his head. He has also ordered him a mri but we can’t get in until November 7th apparently there are only so many machine that test for this. Meanwhile he has what I researched a partial seizures, when he sleeps which is more and more he is looking for things while he is sleeping. Neurologist is not concerned as he said everyone does that, well I don’t. It has become worse in the last week so when I go tomorrow I will mention this again. But now I have to relay all this to the oncologist and let him know he is not taking the pills until the test tomorrow or longer? I am fit to be tied. He woke up every 30 minutes with one the other night. My girlfriend said how am I tired? Not tired passed that now exhausted. He was also on aricept but doctor took him off it because of the dream situation.
Any feedback on your situations would be appreciated I feel like I am walking in the dark. Thanks

@lost55 When you say delusions is she awake or asleep because I am sure my husband has partial seizures when he is sleeping?

@jeanadair123

@jeanadair123 As a retired nurse dealing with MCI myself I recommend that you keep the physicians "separate". The neurologist should handle the MCI/Alzheimer's specifically. If questions or concerns arise with neurological health you should contact the neurologist.
If questions or concerns arise about general health you should contact the usual physician who has been handling that.
You should also request that whichever physician he sees , that physician should send a copy of that encounter to his other physician. This way each physician knows what the he is thinking of.
Hope that helps.

Thanks that really helps. I felt in a quandary as to what to do. Since he has his test tomorrow with the neurologist I will wait and see what he says then notify my oncologist. I hate making decisions that affect my husbands care especially when one of the medications I am sure caused his seizure and the oncologist without doing any further tests is okay with him resuming the medication. But as you say two different specialists. I would just like to add his neurologist has taken him off the aricept without replacing another. Thanks again

@jeanadair123
When she is awake

Dear @jeanadair123

You have a complicated situation to be sure! I will share two experiences just in case they are helpful.

Seizures were the beginning of the end for my husband. I would recommend doing whatever possible to avoid them. Obviously, everyone is different, but in our case, a few "Syncope" episodes (fainting instances, which were later considered to be seizures) were followed by a seizure. From there he got myoclonus (Involuntary muscle movements) and things went downhill fast. Each of those events affect the brain and, in turn, the body.

I see that you are already dealing with several specialists. We had a gerontologist as well and I am very glad that we did. The neurologists treat neurological symptoms/diseases. The Gerontologists can help you integrate and balance the various streams of treatments and address the practical aspects of demential progression. Ours was helpful in those ways and was invaluable in the end. Our neurologist was treating the myoclonus logically. But it was our gerontologist who was the one who looked at all that was going on with Gary and told me that it was the beginning of the end. I was able to get him on in-home hospice and it made it possible to give him the best possible care and support right to the very last day.