My wife and I have been taking care of my grandmother for over 2 years now. My wife is 23 and i am now 31. My grandmother, FRO, will be 90 in a couple of months. She broke her hip last year and it really sent her deep into the disease. We have had her on Namenda and Aricept for a while and with noticible improvements. Recently she has now started in with major hallucinations and confusion. It now seems that the Meds are not working like they use to. I am just wondering if any of you have taken your loved one off of these medications after they have reached a certain point? And if so what happened?
These medications are very expensive and if they are not going to continue to help slow down the progression, are we better off not taking them?
I have seen some of your other posts about Risperol and some other meds to help them sleep at night. Please be aware that these drugs could harm your loved one with AD. If they seem to be in a coma the next day after using it, you might just want to consider a different alternative. There have been reports of death and other major complications.
This topic has a section on these boards. If you look at the top of the Message Boards, you can click on a tab labeled "search". When the page comes up, make sure the circle next to "topic" is filled in. Write in "Stopping Meds.", and click "search". The topic and all of the posts related to it will come up.
I just finished reading the discussion labeled Stopping Meds. I was still unable to find the answers to the questions i was seeking. I am sure Wondering, was wondering the same thing as me. I started a new discussion on the same topic, because i thought that Stopping Meds went in a different direction than the questions listed above.
Have any of you taken your loved one off of these medications? At what point did you do so? And what happened?
These medications are very expensive and if they are not going to continue to help slow down the progression, are we better off not taking them?
Fro, my husband took Aricept for a couple of years 1999 and 2000...the decline continued and his doctor and I decided to discontinue. Whether it was a good decision or not, who knows?
Talk to your doctor and express your concerns....I know some LOs are on Aricept and Namenda until they die...so there are two sides to every story.
This is so odd...my brother and I were just talking about this very subject. I am quite interested in what all of you have to say. Here is our situation: My LO is in a group home. It's like home daycare, but for seniors, and it's 24/7. They do accept AD patients, but one very strict rule is they must sleep thorugh the night. We want our LO there very much. It is homey, and not at all a cold impersonal facility. But she is a night wanderer. After doing research, I have come to find out that the major AD drugs all have insomnia as a side effect. When we were in the early stages, and trying to slow the progression, I could understand taking them. But we are to stages 5-6, and we are past slowing anything down. We asked her doctor why she is taking these drugs? He gave a very hard to understand ramble about something or other, and says to stay on them. But she will lose her her place in the houseif she doesn't get some sleep. We CAN"T take her back...the full time care has already placed a family member inthe hospital for exhaustion. We don't want a nursing home. So...do we trade off the drugs for the place to be cared for?
I am leaning more and more toward canceling the drugs that are "slow progression" related. Has anyone heard of anything bad happening due to dropping drugs?
I don't know the answer to this one ( I don't know the answers to alot of questions). I would certainly start with her doctor. Does your grandmother have any of the negative side effects of the medications?
The hallucinations might be helped by an anti-psychotic medication like seroquel or resperidol. Although, there have been several reports lately warning about using these drugs with elderly patients.
I would just be open and honest with her doctor. Make sure that he/she understands that you are looking to give your grandmother the best quality of life you can for the time she has remaining. If the meds are causing side effects like nausea/diarehha and she does not seem to be benefiting from them, I would think taking her off of them would increase her quality of life. I do think that you would have to gradually taper the meds down though.
Unfortunately, like so many of our decisions, the only people who can make this decision is you and her doctor. We can tell you what we would do, but it's ultimately what's best for your grandmother and your situation.
I will keep you all updated on what the Doc says we should do. If we do take her off of the Meds then i will definately tell you all.
I think most of us come to this situation and do not know what to do. At first she really responded to the Medications, Aricept and Namenda. Now she seems to be so far gone that i am not sure they are doing her any good. When we are at home now she asks "Do you know the way back home?", or "Thanks for coming to visit, when will you be back?", She talks constantly to hallucinations and now she doesn't even know if she has messed herself. Last year at this time she still knew how to dress herself, she could go to the bathroom alone without assistance, and could play with her little dog.
Leighanne, We never seen any side affects from Aricept or Namenda, however with Risperdol i am sure it nearly killed her. That drug turned her into a Zombie and lasted days in her system. It worked too well. Be careful with that drug.
Hi , first time here. My mom is 78. We lost my dad last June. We knew mom was forgetful but didn't realize how much dad was covering for her until he died. We first chocked it up to loosing dad. We got her on aricept. She was very angry that the Dr. used the words dementia and alzheimers. Was on it for 5 mo. along with a depression pill. Then came the sleeping pills that only worked part of the time. I came across this site and saw the comments for and against meds. I did research and came up with a vitamin cocktail. Mom has been on it for one and a half mo. She still has troublel sleeping but the halucinations and bad dreams are gone. There are good days and bad days of forgetfulness. I want to know if anyone has tried vitamins and if we will loose ground that we won't get back if we feel it isn' t working? What side effects have spouses seen with meds? I see some mix several together. I am a daughter, not a spouse but I can empathise because of my parents 56yrs of a loving marriage and mine of 31 with the perfect man. a daughter just trying to hold on Deborah
Don't worry about not being a "spouse". You don't have to apologize. I don't feel you're intruding.
The only side effects that Robert has had since on the alzheimer meds has been a skin irritation from the exelon patch. It looked like burn marks where the patch had been. Some are still visible and he's been back on the pill form for a couple of months. Right now he takes exelon, namenda, resperidol, paxil, trazadone and blood pressure medication. He has some vitamins but I'm not sure if he takes them regularly.
It sounds to me like you're doing everything you can for your mother. One of the symptoms doctors look for when diagnosising alzheimers is the denial that anything is wrong. This is one of the reasons (that and the fact that Robert is only 46) that it took a year and a half for a diagnosis for us. Robert realized that his memory was bad and would tell the doctors that. They thought that since he said he couldn't remember things then that meant he didn't have alzheimers. It was really frustrating.
I don't believe there have been any definitive studies on the effects of stopping AD meds. However, there is a lot of anecdotal evidence that when a decision is made to stop the meds because they don't seem to be doing any good any more, the patient can go into a very steep decline -- showing that they were helping. They slow the progression, they don't stop it. And restarting the meds may not bring the patient back to where he was.
The reason for prolonging stage 5-6 is that stage 7 is one whale of a lot worse.
On the other hand, sometimes a med is causing unpleasant side-effects, and stopping a med can improve the patient's well-being.
This is a question that causes a lot of soul searching and anxiety. No matter what you choose to do, you will probably never know whether you made the "right" decision. You just have to do the best you can. By all means, if you don't feel you got a good answer from the doctor, try talking with him again. But he may have been rambling in a hard-to-understand way just because there is no way to know, really KNOW, what's going to happen.
As for me, until my DH has symptoms that may be indicative he is developing a nasty side-effect, he'll stay on the meds that helped him in the beginning.
my husband had been on aricept then added reminyl for over 4yrs. then out of the blue developed adverse nausea to the reminyl. had him on aricept and namenda then the got rashes from the aricept so we stopped that after many yrs. he is now only on namenda in the pm at bedtime and it was reduced from 10mg twice a day to only 5mg at bedtime. we weaned him down to this smaller dose just in case. and hes been doing pretty good and seems much more able to function than with both higher doses. it was mainly that i saw that his aggression was more in control with the namenda so we used the two doses/day. now as hes moved into the late 5-early 6 stages he doesnt need the other dose as much and sleeps much better with a dose at bedtime only. i have had him off all of them at once then to restart to see which he had reactions too one by one per dr, and he most definately declined even in a short time off them,and couldnt do half of what hes doing now and he was at an earlier stage then- so i will keep him on whatever helps him retain his abilities best or until he has some sort of nasty side effect. Divvi ps we also had to be on small dose of zyprexa in early stages for the aggressive/unruly stage he went thru and that zombied him out for hrs even with a small dose but i found it necessary at that time to give for control..there is one good thing they do move into a new stage and can be much easier to manage so dont loose hope if yours gets to this point. Divvi
My wife was on Aricept for some years, but i questioned its effectiveness.
I discussed it with my pharmacist and decided to take her off of it for a bit (she had missed a week or so by that point) and see what happens. There was no change, but a few of the side affects diminished. I have since talked to our new doctor (had two retire in the middle of all of this) and she didn't suggest going back.
I think there are so many variations on this Dimentia/Alzheimer's thing that what works for one person may not work for the other. There is also a difference in the way we each handle the meds, increasing the variability.
I am not sorry we took her off Aricept, but the lack of problems in my case may well not be typical.
Thank you all for the info so far. Mom was off aricept for 2 mo and I saw a steep decline, even though I had her on a cocktail of the vits. that are supposed to help in this area. Today I slipped the aricept back into her vits. If i talked to her about taking it I know she would not want to admit to needing it and she hated taking pills. Also. in a couple days she would forget what it was for anyways. I feel so guilty but your info has helped so much. I can see how different each case is. Deborah
Nancy, Joan has a list of "web abbreviations" in the green menu bar on the home page, about a third of the way down, with a picture of man scratching his head.
We don't use nearly as many of them on this as the folks on the Alz Assoc do ... it is alphabet soup over there!
I checked that..and FTD and ttt were not listed. Reminds me back when we'd spell in front of the little children so they wouldn't know what we were talking about. :-) C'mon you guys!!!!!!!!!!!!!
The only way you can tell if a medication is working is to discontinue the medication. Discontinuing Aricept and Namenda can markedly increase the rate of decline in some patients. The purpose of both of these drugs is to allow the AD patient to remain a functioning member of society for as long a period of time as possible. All AD patients are different, as you can see from some of the above comments discontinuing these medications in some patients may make no discernable in difference in them. It is a judgment call the patient's Neurologist and family has to make.
Seroquel will help with both halucinations and help them get a good night's sleep. Seroquel is very flexible and comes in a wide range of strengths. The pills can be easily split in a pill splitter to provide a smaller dose or allow a larger dose to administered at bedtime for example. Seroquel, Risperdal and Abilify are all in the same class of drugs and come with the "black box" warning that states they should not be used by persons with Dementia. Neurologists use them "off label", most PCP and Internal Medicine types will not prescribe these mediucations. Again this is a call the Neurologist will have to make, they will need to determine if the benefits out weigh the risks.
My DW was recently taken off of Seroquel and put on Abilify, Abilify is a hugely expensive medication, Seroquel is much more cost effective.
My FTD husband took aricept for 2 months then had a life-threatening GI bleed. 22 daysin the hospital negated anything the aricept may have preserved. When I said I wanted him off that med none of the 3 Drs. had any objections. I was able to work prior to that incident but he needs me full time at home now. I'm not knocking aricept at all. It's just that the consequences were disastorus for us.
cs, it never ceases to amaze me how many doctors prescribe aricept for an FTD patient. Cholinesterase inhibitors such as aricept do not help FTD patients, and can actually cause harm. Sigh. Maybe some day, most doctors will understand there are different types of disorders that cause dementia, and they are not all treated the same.
cs - I second the Seroquel vote. My FTD husband takes Seroquel and Namenda but the only thing that I ever saw make a difference was the Seroquel. The have tried Depekote also but it made him a zombie.
I'm not Bluedaze OR Sunshyne, but I'm here to echo their remarks. I'm surprised they didn't put my name on the Seroquel label, because since my DH has been on his Seroquel - my stress level has gone waaaay down.
It's not fool-proof, but his temperment has definitely mellowed since he started taking it. The Neurologists start the dosage at a low level, and gradually increase the dosage until they are assured the caregiver is no longer suicidal. :-)
From what Sunshyne has said in the past Namenda helps FTD patients and there is even a study going on right now so the FDA will approve it for those patients. For some reason they always start with Aricept or Razadyn first.
There is anecdotal evidence that Namenda has helped some FTD patients, Starling is right about that, and so there are some clinical trials under way.
The other meds that can be helpful are the SSRIs (Selective Serotonin Reuptake Inhibitors). Examples of these drugs are Prozac, Paxil, Zoloft, Effexor, Celexia, Lexapro and Luvox. These medications were initially indicated for depression but can also help reduce anxiety and help treat insomnia in dementia patients.
I know this sounds tacky and uncaring, but I had to shake my head a little at the first post, "you might just want to consider a different alternative. There have been reports of death and other major complications. "
In my mind, AD is the 'major complication'. And as far as the reports of death, well........sigh....if only. Death isn't the worst thing that can happen to you, I have some to find.
CS first of all welcome to the forum. there are many of us traveling this road with you.
I have just returned home from the hospital, my DW was admitted yesterday with a GI bleed. They did a Gastroscopy early this morning and cauterized the bleeding spots in her stomach. The Neurologist came in this afternoon, he took her off of Aricept, 81 mg Enteric Asprin and Coumodin. She still takes Namenda. I am wondering what effect the elimination of the Aricept will have on her. I also realize that Aricept can cause gastric distress. I don't know if the Namenda will do the job by itself. I am wondering what the future holds. I haven't seen the Neurodoc yet, but I will ask him this question when I talk with him.
Jimmy, my husband has had two GI Bleeds ..both requiring multiple blood transfusions - and never did anyone mention taking him off Aricept. I will definitely ask his neurologist. My concern is that each of his specialists only care about their particular discipline..and they don't care about his other problems...even though they are clearly stated and outlined on all of his records. I'm up to here! with doctors in general.
Jimmy, I think I would ask about the aspirin and the coumodin first. Aren't both of them blood thinners? Whatever the problem I hope you get what you need to help your DW.
They have already stopped the Coumadin and the baby asprin, both of them are obviously blood thinners. She takes Coumodin because of her history of of TIA's, the Coumodin was prescribed by the Neurologist, the baby asprin added by the PCP may be the culprit.
The reason I asked the Question is because I am interested in what happens to an AD patient's mental capabilities when the Aricept is stopped and they only taking Namenda for AD. I was hoping some of you had some experiences you could share with me.
Co-ordination of doctors and their prescriptions are an ongoing project at my house. We are very fortunate that her Neurologist is very aware of drugs and drug interactions and helps us keep the other doctors on the right path. Anytime she is hospitalized I make sure that he is available on a consult basis.
My husband has ONLY taken Namenda for a couple of years now; Aricept didn't agree with him. Remember that neither of them really have anything much to do with BEHAVIOR, only possibly their memories, etc. In comparing my husband with others' I don't see any real differences in the changes in mental capacities.
jimmy my husband was only on namenda alone for about 2yrs. i thought he did well on it alone after cx the razadyne before that -my DH also developed acute reactions after several yrs on aricept so that was cxd prior to the razadyne/namenda combo. then we went with just the namenda alone-he was in late stage 5-early 6 when on it. his mood was good so i think it helped control the swings some. we did finally dicontinue the namenda - thinking it may be a culprit for the jerks he started having and he did so well off it then neuro decided to keep him off all AD meds at that point. its been a yr now off all meds and he's slipped mentally but eats fantastic and in good moods and smiles alot. divvi
and smiles a lot... and, and, ... gotta put in the rest, poop queen!! ;-) Mine is also in the depends stage. I wonder if it's less if they DO use aricept.
well thats a 'given' for me, Briegull:) i really dont think there is anything in latter stages than can deflect the incontinence issues. once those brain synapes are gone that coordinate the brain-to the /urine/poop connections, its a done deal. and i did say he 'slipped mentally' which that entails...sigh. its a tradeoff, he was in a battle mode for bathing, and losing lbs at alarming rates, and off the meds hes incontinent but eats well and very lamby...pick your battles. for him this is the better state, for me, well, that goes unsaid but i am willing to sacrifice for his well being for now..Divvi ps and in our case DH suffers gastric issues as well and has alof of reflux which could be a cause as well. sometimes other illnesses contribute to the incontinence too.
jimmy, my husband was put on namenda first, and improved quite a bit.
But, on average, patients do better on a combination with a cholinesterase inhibitor.
One of the more frequent side effects of aricept is gastrointestinal bleeding.
So ... what about the Exelon patch instead? Since the drug enters the blood via the skin/muscles, it bypasses the gastrointestinal tract, and so most gastrointestinal problems are avoided.
You do need to watch out for a skin rash, however. But there are ways to help prevent that if it starts up.
bluedaze, i wish i was kidding on that one...:(( those cells are the last of the mohicans..haha..then its doubledutydepends era for the endurance. divvi
divvi-I wasn't making light of the situation. Don't know how you keep your sense of humor. Just thought about what I just wrote. Isn't that the same thing as those people who "don't know how you can be so strong". Was it Pogo who said "we have met the enemy and it is us"
The Chapter: ZEROING IN ON THOSE POLLUTERS: WE HAVE MET THE ENEMY AND HE IS US, By Walt Kelly, Page 224. Beginning with the sixth paragraph:
“In the time of Joseph McCarthyism, celebrated in the Pogo strip by a character named Simple J. Malarkey, I attempted to explain each individual is wholly involved in the democratic process, work at it or no. The results of the process fall on the head of the public and he who is recalcitrant or procrastinates in raising his voice can blame no one but himself. An introduction to Pogo Papers, published by Simon and Schuster in 1952-53, said in part:
‘...Specializations and markings of individuals everywhere abound in such profusion that major idiosyncrasies can be properly ascribed to the mass. Traces of nobility, gentleness and courage persist in all people, do what we will to stamp out the trend. So, too, do those characteristics which are ugly. It is just unfortunate that in the clumsy hands of the cartoonist all traits become ridiculous, leading to a certain amount of self conscious expostulation and the desire to join battle.’
‘There is no need to sally forth, for it remains true that those things which make us human are, curiously enough, always close at hand. Resolve, then, that on this very ground, with small flags waving and tiny blasts of tiny trumpets, we shall meet the enemy, and not only may he be ours, he may be us.’
As years passed, the final paragraph was reduced to “We have met the enemy and he is us,” in a few strips having to do with pollution. The nine words form the title and theme of a Pogo motion picture currently in work, believing as I do that we are all of us responsible for our myriad pollutions, public, private and political.”