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3seraphim Asked November 2010

Has anyone ever made the decision to stop there elderly loved one from taking Alzheimer’s medication?

My mother has stage 6 Alz and acts afraid and anxious most of the time. The doctors say that the two prescriptions she takes, Aricept and Namenda, may or may not be keeping the symptoms at bay. It seems almost cruel at times to keep her on these meds to prolong her life when she really has no quality of life anymore. She doesn't know her family. Has anyone had to make the decision to discontinue the meds?

minocqua Jun 2017
My dad stopped giving my mother Namenda and Aricept last month. She had been on them for 6 years and 3 months. He thought things couldn't get any worse, but since he did that, things have gotten much worse. After she stopped those meds she has gotten extremely aggressive and sometimes violent, which is very uncharacteristic for her. Is it possible to put her back on the meds, or is it too late now?

Thanks!

JKcaregiver Dec 2016
My mom's doctor prescribed her Zyprexa for her hallucinations. She however, only has hallucinations around every two weeks. The episode usually lasts three to four days. I'm just not sure about giving her this med. He also prescribed her Neudexta for her crying. I know that she is crying because she is frustrated and not is not crying for no reason. I trust her doctor but just think he made these choices too quickly.

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trannydog Jul 2016
I think Dr.s here have so many patients and with medicare issues they just really don't care that much. Yes I have made the police and the sheriff fully aware of his condition...He really tries not to get aggressive..I can't help but feel so sad that he has this horrible disease. I am also very aware of what can happen really quick. His sister passed away with alzhiemers and so did his mother..His mom was not aggressive, but his sister was really bad..That is why documentation is so important. Everyone needs to know incase I would have to have the sheriff pick him up sometime..If I ever feel that he is starting to get to the aggression point that I fear for myself or my life, I will act quickly and without feeling regret..

Sunnygirl1 Jul 2016
You can start a new thread by clicking on the blue box that says ASK A QUESTION. It's beside of the words Recent Discussions. You then can fill in the blanks. I think that would be ideal, since more people will see your question and respond.

I think you have a very difficult situation and I wonder why a doctor would not put your husband in a hospital (psychiatric ward) in order to adjust his meds and determine just what is going on with him. They should determine what is causing his symptoms and treat it. If meds are the cause, they might adjust them. How long has he been taking them? There could be adjustment periods. I don't know, as I don't know anyone personally who takes those medications.

What do you mean that you want documentation, in case you need some help? Have you informed the police about him? It's not right to live in fear or danger. I would likely seek the opinion of an attorney in your jurisdiction to seek options and to protect yourself.

Others on this site may have helpful suggestions. I hope they respond.

trannydog Jul 2016
I am new to this site, and don't know how to do a new thread...Yes our Dr. is very informed on everything he does. I want documentation just in case I need some help. Some days he is just as normal acting as anyone can be, other days he just wants to sleep all the time and stay awake all night. I still work. I take him to work with me, he generally sleeps in a chair all day. Does not get up and move around or anything. We go home, and he goes straight to bed. and wants me to sit beside the bed in a chair for hours on end until bedtime..He is cold all the time. Our house temperature is set at 85 and then he has a little electric heater on his bedstand that goes all the time. I am here to tell you I am just about fried...He is giving my health a run for its money by me not being able to exercise, do house work, just get away...I know that sounds like me me me, but believe me its not. I have just got to the point I feel suffocated...No he is not in a hospital. We have made so many emergengy trips and once we are there he get agitated and wants to go home. They let him...His neurologist has said there is really nothing more he can do for him..I don't want to take him off the meds and make him worse, but I don't want to keep him on the meds if they have stopped working..

Sunnygirl1 Jul 2016
Trannydog, I'm afraid I don't know much about the drugs you are asking about, although, I'm sure that there are some around her who do. I hope they will see your inquiry. In order to get more attention, you might post your own question on a new thread. That way more people will see it. This one, is on the tail end of an old thread and might not get much attention.

It sounds like your husband can be quite aggressive. Does he have a geriatric psychiatrist? Have you discussed all of the side effects and potential benefits with the doctor]? These type of drugs don't work well for everyone. My cousin does not take them. We considered many things in making that decision.

You say you are waiting for the doctors to tell you whether to take him off or not. Are they seeing what's going on with him? Is he in a hospital being monitored. That might be the best thing to do to get his meds adjusted. You shouldn't be with someone who is dangerous.

What do you mean when you say that part of the time you don't know where he is? I'd explore what options there might be for that, as it sounds like it might be putting him and others at risk, depending on what mood he's in.

trannydog Jul 2016
It is good to read all these comments. My husband has alzheimers and there are times he is lucid and other times he is so far in left field its unbelievable..He is on namendia..aracept..resperdal..and numerous calming drugs. He has been on silver alert, and don't have a clue where he is part of the time. I know its not the way he wants to live..Its still a decision we are waiting on the dr. to tell us whether to continue the meds or take him off. My husband was extremely aggressive before he got this..I am almost afraid to try him without drugs, for my own safety..This is a very horrible disease. I am reading articles that say marijuana pills for medical use, really helps. Why is this not available.

GrammyM Oct 2015
3 Seraphim; Please know prayers are with your mother and you. My husband has had Alzheimer's for 10 years. His doctor has questioned the usefulness of both Namenda and Aricept and periodically has taken hubby off the meds. Honestly, when he was off or on the meds, I could not see one sliver of difference. Then, I was told unless Namenda and Aricept is administered early when the disease is first discovered, it does not help. No tests, or research has proven these drugs are effective in combating Alzheimer's---only another med on the market that rakes in billions for the pharmaceutical company that manufacturers the product. The conclusion from my husband's PCP was as follows; "if you wish to give your husband Namenda, Aricept and it makes you feel better as a caregiver, go ahead. Otherwise, you are only spending money foolishly..." There are times I faithfully give the medicine and periods of time when I do not. Nothing changes---life is the same. If anyone is getting worn down and worse, it is me---the caregiver. Seraphim, I wish you the best taking care of your mother. Honestly, I seriously doubt if there is a right or wrong answer to your question. Over-all, the only difference I see while caring for hubby is the 'quality of time' spent with him. The time of "presence." His anxiety and stress levels seem to drop, he seems more coherent and happy when I am beside him reassuring him that we are both in this together. And, as any family, that is the way it will always be. God bless. I realize this answer isn't much help, but it's all I have to give...

jeannegibbs Oct 2015
LeeCaregiver1, first, thanks for participating with your loved one in a clinical trial. Without these kinds of studies we would be even more ignorant about what drugs help and how long.

I expect that upon the conclusion of the trial you will be advised that since the drug is apparently not working now you can discontinue it. If there are unpleasant side effects you could ask to leave the trial now, but if it seems just neutral -- not helping but not hurting either -- it is probably a good thing to stick with it for research purposes.

LeeCaregiver1 Oct 2015
I am glad to read responses from everyone as I am going through the thought process of the Alzheimer's medication of the Exelon patch. Exelon Patch was shown to help with cognition, which includes things like memory, reasoning, understanding, and communication, as well as doing daily tasks. Well it is not working anymore. Why should I continue with something that is not working. I will have further discussion with the Doctor in March of 2016 because she is in a Clinical Trial and I will keep her on the Patch until the Trial is over in March of 2016.

GrammyM May 2014
Unfortunately, I do not know of any dementia patient that has taken Aricept or Namenda that the meds has helped. At best, the medication may prolong the condition from worsening. Side affects are headaches, diarrhea and mood swings. If anything, my caregiver friends have become bitter and resentful after paying high costs for these drugs eventually to lose their loved ones. Sad, but there isn't a cure--only prolonging the inevitable. Perhaps the drugs are worth the cost that enables us to have one more day to care for a loved one.

Angela75 May 2014
a friend I take care of has alzhiemers.he became combative.he is now in a psych hospital and has been for about a month.they keep trying different meds and its not working...he looks awful and obviously he feels awful...my question is..when do you stop trying meds?i fel like hes just going to die there

Sujean Mar 2013
I started my mom on Namenda and we are in week 3. She had explosive diarrhea
this morning. Has anyone else experienced this, as it lists constipation? Im wondering if this is something that will go away as she gets use to the med. My mom was seeing people in trees and people in anything that was metal, since she has been on zyprexa these symptoms have gone. Trying to decide if she should stay on the Namenda. Thanks to those who can respond.

jeannegibbs Mar 2013
Rackem, take the drug list in to your drug store and discuss each drug with the pharmacist. Which of these drugs is actually intended to extend life, by preventing a heart attack for example, and which are intended to relieve symptoms and improve quality of life? With this information, have a discussion with the prescribing physician.

Here4her Mar 2013
Mom is in AL memory, first for respite while we arE trying to downsize large home
She has started getting aggressive. They sent her to a special hospital to tweak her meds. Doc decided to stop aricept and named and paxil. Says she is on too many meds.
Will she start to decline rapidly now? I'm very nervous, but he is a well respected and wonderful doctor. I really like him.
But still, I love my mom dearly.

Kabeeena Feb 2013
Also, see if there are any other meds that can be added. I had thought mom was pretty much maxxed out and was taking all the dementia meds there were, or that any others wouldn't make any difference, but when I complained to her doctor about her mood swings and difficult behaviors, he added Risperidone and it has really helped, not with memory, but with mood and behaviors and agitation and anxiety.

Kabeeena Feb 2013
My mom is having more and more trouble just taking her pills. For a while now, I was able to put them on the back of her tongue and have her drink something to wash them down, but now that doesn't work all the time as the pills just float back to the front of her mouth and she spits them out. So I have begun letting them sit in a little milk and dissolve (a little milk so I can see them and make sure they are dissolved) then I mix them with yogurt or ice cream and feed them to her. Her sense of taste is so diminished that she doesn't even notice a difference. You'd have to check and see which ones dissolve, slow release and capsules, and pills with gel coating won't, or they would take a long time. I'm going to ask the pharmacist if any of them can be made in liquid form.

Rackem Feb 2013
I have had the same thoughts. Why keep my mom on all of these medications? My mom is on synthroid, zetia, lipitor, boniva, zoloft, abilify, namenda & aricept. Due to the fact that I am long distance, my sister takes my mom for her doctor's appointments. I asked her to ask the doctor what the point was for all of these medications? Why keep the body from taking its natural course, when the mind has so traitorously deteriating? He suspended the aricept and namenda. I was kind of stunned. This was not my intention. I felt that the statins (zetia & lipitor) should be suspended. We have since restarted the aricept and namenda. I know I need to call the doctor and push the question. I know in my heart that dying of a heart attack can't be worse for my mother than her withering away. I told my husband, if this dreaded disease is my future, I would not want my body to be prevented from dying with flesh sustaining medication therapy. I feel that at this point in her life, her comfort should be our number one objective.

peoplepleaser Jan 2013
Jeanne, I hope I can print out your answer and show it to my dad. It is obvious that the Aricept was helping to keep agitation at bay. We are meeting with a hospice nurse next week, and I'm hoping he will be able to guide us. It looks like Mom will need some medication to keep her comfortable, but she has to be willing to take it. Thank you so much for your response.

jeannegibbs Jan 2013
I don't think that Aricept and Namenda "prolong life" -- they just treat certain symptoms. If they are no longer working it makes sense to stop them, but about the only way to tell is to go without them for a trial period. I would only drop one at a time so if there is a difference you'll know which drug made it.

My husband was on 6 different drugs for symptoms that went with his dementia. He did very well on them for about 8+ years. In his final year when he went on hospice many of his drugs (these 6 and others) were dropped and only "comfort" meds were given. It soon became apparent that he really needed to be on his dementia pills. It is a "comfort" not to be agitated and anxious, for example. And these drugs did nothing to prolong his life, just to keep up his quality of life until the very end. Hospice was OK with this.

peoplepleaser, my husband took Seroquel for more than nine years, in a small dose. I simply could not have kept him at home all that time without it, and he would have been miserable without it. It is VERY scary giving our loved ones these high-powered drugs, but sometimes doing without them is even scarier.

peoplepleaser Jan 2013
I believe it. I know when Mom was first diagnosed she was put on something other than Aricept. She frequently complained of a headache, so Dad let her go off. She declined almost immediately, and so we got her on Aricept. As I said, she still has declined, but not so much that we weren't able to manage her at home. Perhaps it is not the same for everyone, but I would advise, until they are at least immobile, and nearing the end, the meds are helping somewhat to keep them more manageable.

heybillya Jan 2013
I asked this question of a professor at UCLA during an Alzheimer's convention in Seattle. He put up a chart that showed the decline of memory over time for those taking Aricept and Namenda. When the drugs were stopped, memory loss plummeted. My wife has been on them for 5 years now. I think they have slowed things down. She is starting to go into stage 6 now, I believe.

peoplepleaser Jan 2013
I figured this question had already been asked, regarding stopping Alzheimer's meds, but wanted to let others know what is happening with my mom. She has been on Aricept for probably 8 years. She can still walk, but is incontinent, has to be fed, only knows my dad, has garbled speech. I would say she is in late stage. She has been refusing medication for several months off and on, so about a month ago dad stopped her aricept, and some other meds. Well, she has gotten much worse. She can hardly walk, she is agitated pretty much all day and more difficult to care for. We had her at the doc last week and he gave us rx for Seroquel but Dad is afraid to give it to her, and of course, there is no guarantee that she would take it anyway. So, no her "memory" isn't worse, but her behavior is, and her mobility. I understand at this point, why prolong the inevitable, but I do feel this will make it harder for her to remain at home.

54j Mar 2011
Yes I too stopped all meds on the advise of his doctor. Nothing was making a difference so all meds were stopped about a year ago. He stays very irritated but other than that I see no difference in him at all since stopping the meds.
God Bless you and hugs for you as a caregiver, it is a really hard job.

JulieWI Mar 2011
3seraphim - you could be describing my mom! She's exactly the same. My mom has been on them for about 15 months.

How do you know if it's helping or not? I hate to take my mom off the drugs since I don't know if she'll get worse.

sansiam Mar 2011
I took my Mom off of the namenda for it wasn't working any longer & the doc' said this probably would happen, so they ok'd it. In fact, by her taking it, the med was making her worse! My Mom is only at stage one. Keeping her hydrated, having her walk & light exercise & giving her gummie vitamins has actually proved to increase her memory(wierd!)

54j Mar 2011
My husband is in stage late 6/7. His doctor suggested I stop the meds as they were having no effect on him either way. He is the same with or without them. I struggled for a long time whether i was doing right or not but finally decided to listen to his doctor. There is living and then there is just being alive.
This is a very unfair disease!

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