We had been using Namenda for about 5 years, and it is supposedly only effective for 2-3 years. We ran out accidentally and because of some scheduling issues with the doctor it took us one month to renew the prescription. We noticed no change at all during that month without meds, so we then talked to her neuro about stopping them.

The neuro agreed and thought we might try the exelon patch instead. The patch didn't make any difference either, and her skin did not respond to it well. She was intolerant to Aricept when she first tried it 6 years ago, so we'll be moving ahead without medicine.

We've been off all AD meds for a couple of months now and I haven't noticed any changes. It's better that she doesn't take meds that she doesn't need, but it's also a little sad that there's nothing that will help any more.

This board is slowly getting more and more quiet. I hope you all are well.

Hay Jezza,
I'm here-just busy. We took Dad off Namenda too and Glipazide (diabetes) and he actually seems better less agitated and hungry.
It is sobering to know that you are taking them off the meds because there is nothing that will help anymore.
So weird.
Reading a good book - Validation Techniques for Dementia Care by Vicki de Klerk-Rubin and it is really helping.
Take care
Eileen

Jezza,
Bill was off all meds, other than seroquel and ativan as needed for over a year. I never noticed any big changes when we stopped them. Who knows, maybe he would have continued at a slower pace if he had stayed on them. Even the doctors always said they didn't know if the meds helped or not. He may have continued at the same pace with or without them the entire time.

Have you given up on your band now or are you still going on?
There is a life after alzheimers. A lonely one maybe but still a life and it goes on.

Jezza,

My thoughts and prayers are with you as you continue your journey with Laurette.

Jezza, Glad you were able to figure out so easily that Laurette didn't need the meds, even if it is bittersweet. Joyce, I keep wondering if my mom needs the Seroquel anymore although she has had 2 episodes lately that they had to give her Ativan for, so maybe she still does. Our doctor seems to think Seroquel is really hard to get off of, but that doesn't make sense to me. It is terribly expensive.

Yes, the forum is so quiet, it is depressing. So good to see some new posts. I need to do an update so maybe I can do that soon.

Hope you are all well, ~Kelly~

Hey Jezza, I share your sadness for the lack of treatment for this disease as I'm sure we all do. My grandmother was much better when she went off of the Aricept. It tended to make her aggressive. I'm happy to hear you aren't having many psychological or emotional problems with Laurette, I'm sure that makes it easier on both of you. I would recommend researching some alternative treatments that can only do good in reducing the level of injury from the free radicals triggering the destructive process in the nerve cells. ALA, Vitamin E, and Vitamin C are all good places to start as well as Glutathione. I believe it's never too late for the body to heal itself to some extent, even once the disease process has begun.

Jezza,
I'm thinking if this symptom management at the hospice home doesn't work, I may have to stop everything too and do what Aitan suggests and then let this disease run its course. Mom had taken aricept at one time, but the same thing, nothing but complete aggitation.

Have you ever tried to get Laurette on hospice at home? The criteria for it isn't as stringent as they make it out to be in writing. At least you'll get nursing, bathing, some meds, volunteer and supplies. I never thought Mom would be eligible.

Eileen - How' s the book? Any helpful hints you could pass along until I get a chance to go out and get it? And can I get it at a regular bookstore?

Jackie

Hi everyone, it is surprising to me that you are seeing no change when stopping the Namenda. Mom was on a cocktail of both Namenda and Aricept. We stopped the Aricept and Namenda on a step down routine and I saw a total change in her within a couple of days. It is hard to say if the broken wrist had much to do with that or if it was just the meds but when she came home from the hospital and was bed ridden we stopped the cocktail and she was a completely different person within a few days. I know you can't tell while they are taking them if they are working but they made a huge different in her. They kept her functioning the whole time she was on them. Makes me wonder if we should have kept on giving them to her for a while longer. I know each case is different and you are doing what is right for your situation, just wanted to give another point of view. Hope all is well with everyone.

Kelly,
I tried stopping the seroquel or at least cutting down on it, but he would become so agitated and hard to handle that I had to keep him on it right up until the end.
BTW how is that grandbaby?

Linda,
I am at that "what if" stage now. After Bill stopped the aricept and namenda, I really didn't notice any drastic change. He was off of it a little over a year. Now I ask myself what if he had stayed on it? Then I answer myself and say "What if he had stayed on it and was still here, what kind of life would he be having? Sure I'd be able to see him and touch him, but when I look at pictures taken the last few months, I can't believe they are pictures of "my man". So I am willing to give up my having him here for his comfort and happiness There.