when is it time to come off of Namenda?
 

My mothere has been on Namenda for probably 5 years now and is in the late stages I would say. She is young only 69 so this started when she was 62! since she is in an alzheimer's facility the majority of her money goes there so trying to make it last as long as possible but who med costs are high even with an AARP prescription plan! The Namenda is the most expensive and one of those drugs that you just don't know what willl happend if you take her off! she was never put on Aricept or anyting with it just the Namenda! in the beggining I noticed a change for the best but that was at least 5 years ago. I don't want to take her off and make matters worse since she is happy right now and doing as well as can be expected but if this is just costing un-needed money then it would help her in the long run to come off of it. Her doctor doesn't know and said it is a chance you take if you take her off what will or will not happen. Just trying to find out if anyone has had experiences with taking a loved one off and what happened! My sister says deep down she knows it is not doing any good, but I'm the one that has to make the decision and I feel like I'm playing russion roulette with her! Just wanted to see if anyone has had exp. with that and can share with me.

Re: when is it time to come off of Namenda?
 

I would take her off Namenda if it isn't doing anything at all to make her better. Five years on it is very long. Most doctors agree that it doesn't do anything much after a few months. I would advise you to stop wasting money on it, but check with her doctor just to get his opinion.

You are on a hard path - I was there. My Mom lived around 8 years after beginning to show signs of Dementia. She died in December of last year.

Love,

Martha

Re: when is it time to come off of Namenda?
 

Thank you for the information it does help to hear from someone who knows. I am sorry for your loss.
I've been debating back and forth on this matter and keep putting it off, but I think I know it is not helping. Course with this disease you don't know what is going on inside.

Re: when is it time to come off of Namenda?
 

I am in your same shoes Happy. Both or my parents are on Namenda and Aricept. Dad's dementia is vascular (misdiagnosed as ALZ to being with) and has been on both meds for over 5 years. They don't even claim to be effective in his dementia and he has been on the way too long. Mom has been on both for 2 years. I didn't see any marked improvement when she started but have seen an increase in her melt downs. I don't think any of them are doing either any good and the namenda is possibly doing more harm than good considering Mom's melt downs could be a side effect of the Namenda. If left to me, which it is not, I would take them both off the meds. The meds don't claim to cure or stop the disease, it only claims to slow the progress in some for a while. I believe the problem we have as family is that this is a disease with no hope, and those meds are our life lines to hope. It's a tiny little frayed rope, that we are not even sure where it is attached or if it is attached at all, but we hang on because that's all we have.

Welcome to the forum. Hope it is as beneficial as it has been for me. Grab a towel and hang on. Keep up informed as to the progress and know I will keep you and your Mom in my thoughts and prayers.

Love, deb

Re: when is it time to come off of Namenda?
 

Thank you for your information it really helps to hear from someone who is going through course you have both parents so I feel for you big time! one is hard enough with this crazy disease!
Started all this when mom was 62 so it's been going on for a while.
I'm glad I finally logged on to this website after reading messages on it for years! so far 2 people have repsonded very fast and it helps to hear someone else's view point.
I know I will take her off it before the end of the year but it is just doing it since it is all on me. My 3 sisters won't make the decision!
I knew Namenda was not a long term drug and not a cure I just wonder if her body is use to it then you take her off if she will have problems! I think the answer is no but we really don't know.
thank you again for your information and I wish you the best.

Re: when is it time to come off of Namenda?
 

I'm sorry... you have a tough decision to make but we all know Alzheimers is progressive no matter what medications she is on so if it were me I would try the lower costing drug. She isn't going to get better no matter what you give or don't give.... If she is in last stage perhaps no drugs?

Re: when is it time to come off of Namenda?
 

[COLOR="Navy"]We had Mom on Namenda after she had been on Aricept. We saw some improvement, but it didn't last long and her doctor actually thought that it might be causing some of the agression that we had with her for awhile. We ended up taking her off of it the last 9 months that she was alive. By that time she didn't remember me or where she was anyway. She still knew Dad, but that was about it. She still asked about her grandsons though. Guess that tellls me where I rated in the scheme of things, huh?:D

Mom's doctor said that once the disease grabbed hold there wasn't a reason to keep giving it as there wasn't anything that they could do to stop it from continuing on it horrid course...

Welcome to the group. Sorry we had to meet under such bad circumstances....here's your towel....treat it well you will need it more than you will ever know it the coming weeks[/COLOR]

Re: when is it time to come off of Namenda?
 

This has been an interesting thread for me to follow. My mom was put on Namenda last February.

She was placed on Razadyne approximately 7 years ago when we first new something was going on with her. Then, last February, a few months after my step dad died, we took her to her neurologist for a regular check and he found her numbers had dropped, so he put her on Namenda. He said he hoped it would slow down her decline. So far so good..her numbers were better last visit but we don't know if it is because of the Namenda or because we, her kids, have taken over her care from my step dad who just didn't know what to do with her...or because her depression from losing her husband had improved a bit.

Deb, she has had 4 melt downs since then but we know the whys of those break downs...sickness and the sale of her car and her house. Before last November she was having melt downs left and right!
She has been behaving herself, though as I have said before, the disease is still there lurking waiting to punch us in the gut at a moment's notice. I always seem to be waiting for the other shoe to drop.

It makes me sad to read from some of you that whatever effect the Namenda has only works for a few months...but it is why I am here..to learn the good, the bad, and the ugly. ...and of course the hand holding and support.

I do think though that if mom gets to the last stages I would take her off all meds..I mean, what's the point? I don't want to keep her in a living limbo of hell.
Thanks to you all..Meg

Re: when is it time to come off of Namenda?
 

My dear MIL was put on Aricept at the time of her diagnosis with Alzheimers in 2002. She had been showing mild symptoms for a year or two before that, but my husband (their only child) and I suspected Alzheimers and had already moved them to the town where we live and eased her out of driving (this was not difficult since we could take them wherever they needed to go and his dad had not driven since he had a stroke back in the early 90s)

I really believe that the relatively early diagnosis and getting her on Aricept right away was key to doing exactly what Aricept claims to do - slowing the progress of the disease. We were realistic and knew nothing was going to stop the ultimate outcome, but I really believe it gave us a few more years with her more intact and she had a better quality of life. We had our only child (her only grandchild) during this time so she got to enjoy a few years of helping care for her and my daughter has fond memories of her grandmother.

But boy, it was almost immediate when I saw the effects of the drug fading ... I'm sure part of it was the drug's effectiveness winding down and the natural progression of the disease, but her progression sped up so much.

We opted not to try Namenda, neither in combination with the Aricept or on its own once the Aricept stopped working. MIL wasn't aggressive at all in the beginning, but was started to get the usual nervous/agitated symptoms and I was afraid Namenda would aggravate that and upset her further. This disease breaks my heart and has taken away so much from our family, but we just do the best we can and make the best decisions we can at the time with the information available. I try to find peace in that, but it's easier said than done some days.

Take Care,
Shell

Re: when is it time to come off of Namenda?
 

You are probably right Shell. Giving the Aricept early is when it makes the most difference. We were told this by the memory assessment research center that diagnosed Mom. They are doing research on the meds and when they are effective along with how to diagnose deficencies earlier. Mom hid her difficulties for several years after she realized something was going on. It was easy since Dad had dementia and she could blame everything on him including her "depression". By the time she was diagnosed she had moderate to sever dementia consistent with ALZ. Even taking Namenda and Aricept both, by her second evaluation her disease had progressed markedly. We saw nothing that would indicate any slowing of the disease but she was well advanced before she started the meds. She has now been on the meds for two years.

Mom was never depressed in her life. She beat breast cancer (modified radical mastectomy and chemotherapy) with a smile on her face. She was the rock of the family through all of Dad's heart attacks and surgeries.. Her depression started when she realized she was getting ALZ. She convinced her doctor it was depression caused from being Dad's care giver. She later admitted this. Soon after her diagnosis was when the "melt downs" started and they have been continuous despite many medication changes.

I do think it is important to create a time line of symptoms that you notice. Each individual will react differently to meds. It should be a combined effort of the caregivers and the doctor to decide when to stop or start a medication. Open conversation, observation, and realistic expectations are a must. I have said it before and I will say it again. I truly thing we get stuck on these ALZ medications because it is our ONLY hope in this horrible disease. It's hard to lose hope.

Love, deb

Re: when is it time to come off of Namenda?
 

[COLOR="Navy"]We are desparate to keep our loved ones at whatever cost and in doing so we give them drugs that seem to push the envelope of behavior in hopes of what? Where do we draw the line? at what cost to the family and to the patient? It's hard to figure out. And the medical community isn't a big help if you ask me.

Blessings to you that suffer through this agonizing decision. You just pray that you are doing the best you can with what you have at the time you are in. Hang onto your towel and hope it will help.[/COLOR]

Re: when is it time to come off of Namenda?
 

DH was on Aricept for a few years, and then Namenda with the Aricept. He did say that he felt that his brain was a little clearer for a few months with the Namenda. Aricept claims to delay progression, so we couldn't tell if it was working or not. After five years, he dropped both medicines (he just celebrated his 64th birthday).

I believe that his disease has progressed faster since he stopped the drugs. Instead of his MMSE scores dropping 3 points each year, they dropped 4 and 5 points in the last two reports. I don't know whether this could have happened anyway, as he goes into the 7th year of the disease (DH is severely impaired now, and is in day care several days a week with a lady who keeps him company on the other days). When the patient is severely impaired, you start to believe that a faster end is preferable.

Re: when is it time to come off of Namenda?
 

I agree. As long as there is some joy left in the person's life, as long as they wake up in the morning with something to look forward to, even if it is just sitting in the inner courtyard and enjoying the flowers, we hope to prolong that life. Once it is a day of darkness with nothing to be happy about, I wonder what the point is of prolonging it.

My mother's last 2 months were like that, but all the rest of her many years with Dementia she had some happiness every day.

Mom had the rare ability, even when the Imposter took over, to have joy in small things: a bluejay, a flower, a visitor, even when her fellow patients had visitors (one had a redheaded grandchild for a visit, and Mom talked for days about her own wonderful redheaded granddaughter who was there - forgetting it was some other patient's grandchild) even a friendly word from a staff member. I think the secret of this NH on Long Island was the cheerfulness of the staff - always a friendly word, a smile, calling her by name, etc.

Love,

Martha

Re: when is it time to come off of Namenda?
 

My grandmother has been off Namenda for about 3 1/2 weeks now. I really cannot tell any difference as far as the memory loss and confusion is concerned. She does seem a little calmer, though, which has been nice.
Appearantly, the Namenda wasn't making a whole lot of difference.

She is still on Aricept; has beenn for 3 years. Two years ago, we tried to take her off it because it was upsetting her stomach. She got so much worse without it that we put her back on it, so I know it definitely has helped her. I think she'd probably be in the nursing home by now without it. Her doctor says that most patients take a combination of Aricept and Namenda, and that they work better together, but I guess it varies from person to person.

I do have a question for the person who was having trouble affording the Namenda. Does your mom have Medicare part D prescription drug coverage?
My grandmother's Namenda cost only $30 with her coverage from United Health Care. Without it the pills were over $150.

Joel

Re: when is it time to come off of Namenda?
 

My doctor took my mom off Namenda 6 weeks ago. She has been on it just over a year along with Aricept. In that time she has forgot my name and my daughter's. She is in a nursing home and we go to see her everyday. She also calls all the staff the same name. When I come to see her now she give looks at me confused and doesn't now who I am. I wish I had never taken her off of it as it seems to be progress her Dementia rapidly. I am currently trying to find out if putting back on it would help.. It is very fustrating trying to make the right decisions for someone you love. Good luck, I hope this helps.
Heidi

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

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.

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

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

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