DH has been taking Namenda 2xday (10mg) dince last May, and the Exelong Patch 9.5/24 once a day since last November. It seemed at first like things were pretty much staying the same. However, for the last month, I've noticed a definite decline. I can't really put my finger on it. He just wanders around the house looking at things. His posture is stooped and he carried his hands folded in front of his tummy. He answers questions if I talk to him. When we are watching a moves, he will ask no less that 15 times what the name of the movie is. He keeps trying to find it in the TV guide. No matter how many times I tell him it's a movie. But he doesn't initiate any conversation. The repetition is mind-boggling. Every day I have to tell him the recycle bin is the 'square one with the sheels.' He asks every day. Sometimes he comes back inside and asks me what he's suppose to do with the stuff.
I'm wondering what would happen if I took him off the meds. Can I safely do this without checking with his doctor? If he starts to decline faster, can I put him back on it? Any suggestions out there?
In the meantime, I'm hanging on but there are days when I think i am going to scream if he asks me one more time the same thing. I keep telling myself he can't help it. It's the disease. And if it were me, I'd want him to be really patient. And, I am patient, It's just like i feel like running down the street tearing my hair out. Not really that bad. Just a thought.
Mawzy, our FD and Neuro always do not want the Namenda cut down or eliminated, but our FD did try him on the Exelong patch instead of his aricept this summer to see how it would work. I kept him on it 2 weeks and then returned to the aricept because I could see more confusion and the Dr. thinks we should continue with the aricept. I would ask his Dr. about trying something different. Our Drs. have always been very flexible about prescribing about anything we ask for. My understanding is they keep them on the namenda and aricept or whatever until they are about stage 6.
The doctor and I agreed to cut the Namenda from 10 mg 2/day (one morning, one evening) down to 10 mg. in the mornings only. I see a big difference in various things about my husband; however, the repetition I'm afraid will be on-going. But mine seems to have more energy, more interested in different things, doesn't shuffle when he walks anymore, etc. Everyone is different. It's just try, try, try!
My husband is on Aricept, Namenda and Lexapro. I keep seeing the med Exalon on these posts. What is that - our neuro hasn't mentioned it and I keep forgetting to ask her.
What I have learned from the doctors and all the conferences I have attended is that if the Aricept and Namenda stabilizes them, and they are taken off of them, there will be a decline. If they are then put back on the meds, they may improve again, but not back up to where they were before the meds were stopped. They usually don't stop those medications until very late end stages, but it is always best to check with the doctor who prescribed the medications before making a decision.
Mawzy - My wife's functioning was jut terrible and her moods and cooperativeness even worse. Asking her new Doc about taking her off the meds as I felt they clearly were not helping, he was very much against it. I stuck it out for a couple more months and decided I'm the one who has to live with this so its worth a try to see if she improved. Her functioning did not improve but she was a different person as far as her moods and cooperativeness. After a month my son asked me to put her back on the meds as he was running out of patience with her even though she was functioning the same as before. I don't think he recognized how poorly she was doing prior to the change. She's been up to full dosage on Aricept now for almost 2 months and I stopped adding the Namenda once she got up to 1/2 dose. Once again, she is very hard to get along with and her functioning just keeps getting worse. My next effort will be to increase her Buproprian (under guidance of Doc)to help her moods and get back off the Aric/Nam asap. She's too far along. Everyone different so I don't think you have much to lose by trying. Thenneck
Mawsy, i dont think we can ever know the ups/downs unless we give things a try. i was adamant too about my DH staying on even the namenda alone til the end stages due to being afraid of the decline. well he did decline verbally, but his attitude and demeanor are nothing short of miracle and hes so easy to deal with now. he smiles and seems to understand 'commands' much better for an odd reasoning too. i guess some of our folks just dont thrive as well on these meds as thought once they dont seem to have much effects. do speak with the dr before any changes. in our case, at the visit, the neuro said dont give it any more, (namenda 10mgx2day)-i stopped that very nite. i think it does take a few weeks for the meds to work out of the system and then stabilize somewhat. not everyone will have better results taking them off the meds, but boy if i had know how much easier he would be to deal with and so much happier i would have tried long ago. good luck, divvi
Mawzy, as the others suggested you should talk to his doctors. I would like to say there are exceptions to every rule. Just from this post I see 3 of us (including me) whose spouse did NOT have the "dreaded decline" due to going off the AD meds. Lynn had no decline at all. But, he did improve in certain areas. His mind seemed sharper. As divvi said, he could follow directions better and his mood was improved. The big bonus was no more nausea. So, I guess we all know our loved ones best. Regardless of what the statistics say, only we know what is and isn't helping them. Go with your gut, and ask for your doctors guidance. Best of luck Mawzy, and an extra ((hug)) to help you through ~Nikki