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My husband's doctor asked me if I think the meds are helping. How can you know what it would be like if he was not taking them? Is the quality of his life better? Beats the heck out of me. There seems to be some question as to exactly what these meds do. I will have to discuss this further with his doctor. From what I read, it is supposed to help with cognitive and other emotional issues. Does is still help prevent further damage to the brain? I've read that ultimately death comes when the brain stops telling the body how and when to function and slowly shuts down. Is that true? If so, do the meds prolong the brains ability to control the physical functioning of the body? If so..than doesn't that mean that the meds prolong life? Arghhh. Making decisions for someone u love so much....is an awful part of life. But have Alzheimer's is even worse!!! Wish I had all the ethical and moral questions clear in my heart.

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These drugs are the fleecing of desperate people with desperate hopes. I have worked with these patients for years and eventually all of them are prescribed some drug that is supposed to help slow the disease. Namenda is a very popular one, and as far as I have seen you might as well give them a Tic Tac, the effects would be the same... except for the patients that seem more confused or worse in other ways due to the consumption of these drugs. I am surprised to read all of the responses that say this drug helps. Of course all patients respond differently to drugs, but speaking solely from dealing with anywhere from 24 to 12 Alzheimer patients, five days a week for years now... there are no positive effects from this/these drugs. Save your money and accept that quality time with your loved one is disappearing, at a more rapid pace than anyone wants admit. Just love them all you can, while you still can.
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Well said Normandy
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Community is the best information source for caregivers. The entire medicine portfolio requires that caregivers provide a dossier of their experience to the FDA. Not enough feedback so that the FDA can examine effectiveness of their approval for latter stage A D from these reports. I believe the Medicare program should monitor prescriptions based on patients experience and FDA guidance. This should would eliminate waste and contain costs. We must get a handle on doctors providing false hopes with high cost commissionable prescriptions.
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My mom has been on Aricept and Namenda for nearly seven years. She showed no symptomatic progression during the first two years or so of therapy. Then her symptoms started to worsen.So in her case, the drugs gave her two additional years of quality life that she might not have otherwise had. Bear in mind that these drugs provide symptomatic relief only. They do not affect the underlying disease itself.
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Thanks everyone....I guess I was misinformed. Sometimes looking up something medical online is dangerous. I appreciate to response.
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The doctor that my wife sees said that none of the drugs extend the time the patient lives but CAN make the progression of the symptoms slow down
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That was a good answer from your doctor. Thanks for sharing that information!
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As it so happened, I had an appointment today with my internist for my annual physical. She is not my mother's doctor, but she is aware of my mother's situation. I took the liberty of asking her opinion about discontinuing Namenda and Aricept. She feels that as long as the person is tolerating the meds and the behavior is acceptable, she would not make any changes. She said that if mom gets to the point where she is non-verbal and doesn't seem aware of her environment and other people, there is nothing left to "preserve" and the meds should be discontinued. She focuses less on "are the meds slowing the decline" and more on "are things acceptable right now". In other words, if it ain't broke, don't fix it. It made sense to me so we will carry on for now.
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Gorlin, if I were you, I would call the doc, tell how lethargic he is and ask about reducing the dosage, especially of Namenda since I think that was increased so drastically over a short period of time. But, all meds should be tapered even when discontinuing usage of them. The doc will be able to let you know what is appropriate. If the doc tells you to just stop giving them? Get a different doctor. Is his doctor a geriatric specialist?
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So unless up I take him off the meds there is no way of know if they are helping. Isn't that dangerous, I understand if they stop taking meds that they will revert to the level they would have been without them. That would now be their best level and new staring point. Is that right. I jus wonder if some of the weak legs, lack of sleep, lethargy etc., is caused by the meds or the disease.
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Tarajane,

I can feel your relief and joy. when my mom's switch flipped, I was incredulous with relief. I still am and it is almost a year now.
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continued, almost overnight he became as close to his old self that I had seen in a long time. I really don't know now how long he had had Dementia. Now he doesn't cry when I go to work and he does the dishes, sweeps the floors, tidys up like he used to. He really is a joy to be around right now. I thank God every night that he is like he is now because I know I could wake up and he could revert needing more Seroquel. I am just hoping this lasts. It worked for him and that's all I know. I hope it works the same for you if you decide to put your loved one on it.
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Before the Seroquel with the Aericept alone just did not work alone. We got into some terrible arguments which are too long to post but he was talking divorce and me setting rules and controlling his meds and it was terrible and I was a wreck looking for a way out. I called his doc and he immediately called in Seroquel 50mg. It was like flipping a light switch.
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I mean how dare the doctor put the job on you. You've already got the emotional task.
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Hang in there, janamark. It is a horrible disease for both the patient and the caregiver. Try to think about all the good times you've had with your Mom.
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That is the doctor's job to know.
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Oh my, in my statement above, I meant to say that I've read on here where people say that their loved one got worse quickly, after going off of meds. Sorry. I am a bit stressed today. We had to put my Mother into an extended assisted living today. Has been a long hard day.
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My mother takes Namenda along with Guantanamine ( not sure of exact spelling) and there is absolutely no way to know for certain, but I have heard people on here say that their loved one seemed to progress faster when they were taken off the meds. For this reason, we will continue the meds until her neurologist thinks we should discontinue.
This is a great place to find answers, so let's all stick together and get through what we are all dealing with. A horrible disease!!!
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Increasing to Namenda 28mg over six months is a very short time. My mom started with the starter dose of 5mg about ten years ago. Over the course of ten years, her dosage increased gradually, reaching the maximum dose of 28mg just a year ago. Good to hear that discontinuing the med seems to have helped her.
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akdaughter, my husband is only taking Namenda. For the short period of time that I took him off it, he was just completely muddled, and totally didn't know what he was doing. When I put him back on it, his demeanor seemed to level back out.
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My mom, who has been living with me,also has Alzheimer's. She was diagnosed through an all day evaluation at a local memory clinic. She had a base-line test on the first day. We also had to fill out an extensive symptom/history background. She gets retested every six months on various tests. She has been on Aricept shortly after that visit. Her tests showed that she has remained steady in her scores. Some were a notch down and some were up, but they remain pretty steady. I believe my Mom's disease has slowed down. Six months ago they wanted to add Namenda, however when she reached the 28mil dose she was literally and figuratively NUMB. She digressed from conversation, her balance was getting worse, and worst of all she could not hold her urine or even feel the sensation. Since she was taken off NUMBenda she returned to her old self. She does have bad days as well as good days. Hope this helps.
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KneeDeep, you sure went through it and many others have as well! If it takes medication, hopefully everybody can find a doctor that is able to help, then that is what is necessary to improve the quality of life for everybody! Good job!
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How can you tell? I know how I can tell. When my husband does not take it, for some reason or another - within the same day, he turns into a monster I cannot be near. One supposed top notch expert he saw for 30 minutes who gave him 1 psyche test (not all the others due to have because it had been two years since he had them...) and refused to communicate with me or consider the journal I've kept that other doctors greatly appreciated) gave him the green light, telling him he had no sign of Alzheimer's or FTD, (contrary to doctors who'd treated him 10 years, diagnosed 95% certain FTD, and finally had meds tweaked so he could live at home). Ecstatic and grateful that the new doctor (a memory clinic director) had "freed him" and given him a "new lease on life," in his supposed excellent executive functioning state, he quit his Alzheimer meds. Within the same day, he became very confused, was verbally abusive, had no patience with anyone and within days, couldn't get out of bed and was so suicidal, we needed emergency care. Months later now, I can tell if he's neglected taking his meds and avoid him until he does and they have time to help. (Yes, med reactions differ patient to patient. And yes, drug profiteers are nasty, but so are specialists, such as the memory clinic head who caused so much grief due to his neglect, I almost lost my husband.) Thank you for asking, and all the best.
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Nomandy, I am sorry for your loss. Alzheimer's is definitely a cruel disease and very hard for all that witness it's progression!

As far as the meds, there are some on this site that prefer to advocate for no meds. There are many that seek out the ultimate solution, when there is none. Deciding to medicate is an individual choice, which is determined for a variety of reasons. The main question to ask yourself through this decision is "does the medication help my loved one be more comfortable", a close second, is "does the medication make caring for your loved one easier by allowing them to remain in the home or care facility as opposed to a nursing home where there will be little choice". It usually comes down to evaluation of the risk vs benefit. If the medication helps them to be more comfortable, why not? If they are more comfortable, then caregiving becomes easier as well. Yes, some of the meds come with increased risks, are those risks worth the benefit? For most the answer is yes. Eventually something will happen whether it is related to the medications or not that is going to take our loved one from us. The quality of life is the goal, which, IMHO mean comfort for them whether it is medication that provides that or not. It is an individual choice.
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Camussen, could you elaborate on the changes you saw in your husband when the Namenda was stopped? I am facing this same question with my 88 year old mom. She has been on Namenda for about six years, and Aricept (Donepezil) for about five years. She seems to tolerate both, but I read such confusing information about their effectiveness and the length of time they should be used. I have raised this question with her PCP twice, and his response is that the research in inconclusive, and if the meds were stopped and she worsened, she would not get back to where she had been, even if we restarted the meds. Meanwhile, she falls into the Medicare Part D "donut hole" by August each year, which will result in an earlier move to Medicaid. Medicaid will mean a move to a different AL facility because the excellent one she is in now does not take Medicaid. A move at this stage would not be easy. I feel like I am being asked to choose between the lesser of two evils!
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Ferris tells it as it is, yes without any early stage containment it is terminal. I answered on the premise of the question, how can you tell etc. Sorry that the end result is heartbreaking as I experienced my wife passing on August 2 after seven years of caregiving.
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I agree with ferris. Not sure about recovering memory .. Sounds like a sales pitch. Dementia destroys ...
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The unfortunate part is that none of the medicines have reversed AD from stage 3. A new approach from Australia is to measure effectiveness of medicines is isolation they call it polypharmacy. Do not give the patient all the meds at one time one gulp but time frame each possibly one or two hours apart. In this manner you can observe which prescription might have been more affective during the interval. The wisdom of the smart ones have stopped medicine in favor of diet and vitamins Again all of this depends on the patient and the wisdom of a neurologist who should be consulted as they are medicine specialists.
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My sister sent me an article about using coconut oil to reverse dementia. I haven't purchased any yet, and after seeing your answer about it being helpful for overall health but not dementia, I won't buy any.
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My husband, who is now 76 years old, has had ALZ now for 10 years. The doctor put him first on Aricept but he had such bad side effects, he quit taking it. He's been taking Namenda now for years, with no side effects. But, our doctor said it's obviously not helping so he could discontinue it. I took him off it, and in one week's time there was such a difference, it scared me. So I put him back on and it seemed to level the progress out again. Maybe different meds work for different people.
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