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Alzheimer's Disease & Dementia Message Board
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Old 10-19-2010, 07:37 PM   #16
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Re: when is it time to come off of Namenda?

Heidi... Mom took a downward turn but it was unassociated with the Namenda or Aricept. She was going downhill before we took her off. We took her off because of behavioral problem possibly related to the Namenda. During that same time she moved, had recurrent UTIs, and a stay in the hospital. At that time my sisters questioned putting Mom back on the medication so I did ask the Psychologist that was working with us. He assured me that it would not give her back anything. It would probably not slow the future progression either but that is the best we could hope for. I don't second guess my decision.

These medications only slow the progress for a short period of time after they start taking them. Then the progression follows any other patient with ALZ that is not on the meds. The downward progression is not steady but comes in ups and downs and then steep declines. It's almost impossible to say if the meds is the reason.

Mom recognizes me sometimes. Sometimes she even calls my name. Other times she has no idea who I am. She is in a locked ALZ unit and since she was taking off the memory drugs and her anxiety treated properly she has finally found her smile back. I will take that smile over saying my name any day

Know that we do what we think is best in the moment. That is all we can do. Then we go on to the next moment and grab the moments of joy we can from each of them

Love, deb

 
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Old 10-20-2010, 06:59 PM   #17
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Re: when is it time to come off of Namenda?

Namenda is suppose to be a ‘memory maintenance’ drug. Good Luck - the only winner is the manufacturer - $200 ++ a month for a worthless cocktail of chemicals. What memories are retained - the good - the bad - the ? Physicians and Psychiatrists have no idea how to treat AZ - called - ’grasping at straws.’ Just prescribe some more pills. My wife’s original number of prescribed meds were 10 - including Namenda - fired the psychiatrist - canned her doc - and was fortunate to get her on hospice very early. - in which she was ’weaned’ off of 8 meds.

Just being realistic - may as well give them Bloody Mary’s at breakfast, red wine at lunch and champagne at dinner. That combination can’t be any worse than the number of chemical cocktails and their side effects they push today.

So your decision - give them their prescriptions for a
near or upcoming zombie-like state - - - but please check the med’s web site for contra-indications and side effects.

My spouse was only on Namenda for 10 months - personally - it was a complete waste of $$$ - the disease progresses regardless.

As you said it is ‘Russian Roulette’ - but you know the ending - and there are no blank chambers here. There’s no cure today for the condition - maybe the best prescription is to - just hug - hold and converse - and bring your favorite ’medication’ for both of you to enjoy.

 
Old 10-20-2010, 07:04 PM   #18
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Re: when is it time to come off of Namenda?

Thanks Deb,

Its been a long 19 months in the nursing home. My mom broke her hip and had never walked since. The surgery progressed my moms Alzheimer's so her recovery and rehab did not go well. We have adjusted to being in the nursing home but some days it hard to stay cheerful. I cheerish the days that bring smiles and fond memories. It breaks my heart on the days she looks totally lost and depressed.
Thanks for you response, I'm going to start being confident about my decision with her care and not dwell on what if's.
Heidi

 
Old 10-20-2010, 07:22 PM   #19
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Re: when is it time to come off of Namenda?

Exactly Heidi This is a progressive disease with no cure. Anything out of the ordinary can throw them further down the slope of decline. A broken hip is traumatic even for the most cognitively aware. For those with cognitive impairment it's a sure ticket to worsening of the condition. I am not surprised that rehab and recover did not go well. The cognitively impaired does not have the memory or ability to cooperate with the instruction of the therapist. Mostly they are just scared by the unknown. Then she had the adjustment to the new living arrangement... times three (hospital, rehab, nursing home). There is nothing these meds can do that will enhance or inhibit what has happened. Like my Mom's downward spiral it was all because of circumstances beyond your control.

The meds we have today only promise to MAYBE slow the decline. They don't promise to maintain or improve and they don't promise it for everybody. Having discussed these meds with a research group where Mom was diagnosed (they did NOT put her on the meds her personal doctor did that) they say that in the very early stages, usually before we even know we have the disease, these meds might be more effective. But when the disease is full blow, which is when most are diagnosed, the meds have little effect. Once the MMSE drops below 20, there is no reason to give them at all. With some there are unwanted side effects as well that are more troublesome than the benefits. But it is the ONLY hope they can give up. This is the only disease that the doctor's can give us nothing of value so therefore they hand out the pills like they are the ticket to a magic land of cognition (just like the commercials want to make you believe)

The new one that is being touted now... the food supplement... is such a head shaker. "There is MORE you can do"... talk about playing on our need for hope and our guilt that we can't do anything. But it works by producing keytons in the blood which mimics diabetes. Wait... If that were a cure then NO type one diabetics would get the disease. So the science behind the food supplement is faulty to start with. But I bet they make a fortune preying on the loved ones looking for "something more they can do". This med has not been tested as effective... the FDA just made sure it was not harmful. Well, at least it didn't have extreme side effects. Just nausea, diarrhea, stomach upset, and other digestive problems.

I'll crawl off my soap box

So don't second guess your decision. We do what we know in the moment, we learn as we go, and then we do what we know again. We do the best we can and that's all we can ask of ourselves. Enjoy the good moments and get through the others. Make Mom as comfortable and happy as you can while she is being well cared for. That is all we can do

Love, deb

 
Old 10-21-2010, 08:36 PM   #20
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Re: when is it time to come off of Namenda?

Heidi... you are going through the stages of grief....

The anger, depression, and finally acceptance are the three we tend to get stuck in. The anger can be directed at anybody. The deceased or living parent with dementia, yourself, some other person that didn't do something, or the world in general. We are just angry. The depression is a numbness, despite that anger and sadness that you might still feel, I truly believe this situational depression (as opposed to clinical depression caused by a chemical imbalance) is a form of self protection. We numb ourselves until we are able to emotional handle our loss. We reach acceptance when we find a way to carry our loss without it crushing us. I think this comes in waves and stages. There are days and times we have acceptance and then a song comes on the radio or we see a special item or we look up and see our parents in the midst of this disease. We can slip back into our sad angry depression. Then we come out of it again and this time stay a little longer.

What you are felling is absolutely normal. It's our emotional way of accepting what we don't want to accept. It comes in stages but we get there Hang in there. You are doing well!

Love, deb

 
Old 10-22-2010, 02:02 PM   #21
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Re: when is it time to come off of Namenda?

Deb,

I've gone through the 3 stages of grief, now I just go between sadness and numbness. The best days are when we can laugh at the things mom says and does. She really can be quit humerous. I try not to think of the things we used to do, but like you said a song, picture, or thing can shattered that numbnes. Thanks for support! Heidi

 
Old 10-22-2010, 07:12 PM   #22
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Re: when is it time to come off of Namenda?

It is the way of grief Heidi. It is that slow process of coming to terms with the unthinkable. Each does it in their own time and in their own way but at some point we all have to find a way to carry that grief so we can move forward and not be held down by it.

While Mom is still here you need to stay in the moment with her. Yes, she is going to do things that will make you laugh and that is how it should be. I truly enjoy the time with my Mom and we both laugh and smile and have fun with each other. If you look back at what was or forward to what will be you are robbing yourself of those precious moments in the here and now. My Mom is in the moment. She doesn't remember her previous life and had no idea what is ahead. All she knows is what is happening in the here and now. I take my cue from her. Perhaps it is the one thing our loved ones have to offer us.... learning to appreciate what is right in front of us without the past or the future interfering

Just take one day at a time and try to grab the best that day has to offer. If you need to cry then do so. After that good cry, get up, brush yourself off, and look for the silver lining that is surely there.

Love, deb

 
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