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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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What meds is your husband on?

From what I understand the medications can slow the progression of the illness down. Not cure it. Not erase the damage it's already done but just slow it down.

We have some great folks on her whose loved ones are on medications for Alzheimer's so I imagine that they'll be stopping by with their own personal experiences.
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Not much response to this. Hard to judge. Am going for a counseling with his doctor soon and I am hopeful he can give me some direction. Thanks
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My husband has taken Aricept since shortly after his diagnosis of Alzheimer's, or FTD. We have no way of knowing how things would have been if he hadn't been taking it, but will continue taking it, having faith that it is slowing things down. If he gets to a point where it's obvious it isn't helping, then we will stop.
I agree, this is a horrible position to be in, having to make these kinds of decisions and many more. Hang in there!
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That is why I was so glad when my mom wen to a senior behavioral clinic. I didn't know how to answer the questions about the meds. But the pros watched her like a hawk and they knew.
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The meds supposedly slow the progression, and help to manage behaviors. I have had the same question, how do you know. Actually, you don't. All you can evaluate is whether it is a situation that can be tolerated. If not then different meds are tried. Then finally you find the ideal med regimen, they seem like they are getting on better. Then comes another change in behavior and start the trial and error of new meds all over again. They have taken these meds for so long, you wonder if they are doing anything at all other than filling pockets of the pharmaceutical companies. Since behaviors are manageable/tolerable then something must be working and we become afraid to stop the meds.

That is all that can really be evaluated. Do they seem to be feeling better? That is the primary goal of the meds. We all know our loved ones certainly would not be able to judge, at least in a way that required them to reason out their decision.
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When my husband started taking Seroquel it was like day and night. It is a miracle drug as far as I am concerned. He is also on Aericept but he needed something else and Seroquel is it. He started it Sept. 28 50mg, now how long he will stay at this stage is no one's guess but ask the doc if you can try that. Hang in there and stick to this forum like glue.
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You can't ever prove something like this. There is no way to compare your husband's response to the meds versus no meds. The studies they've done on the meds allow comparison of control versus treated groups. There you can see if the drug has a statistical impact. But on an individual basis, no, you'll never know. I guess some folks get a noticeable bounce from the drugs but others just get worse slower. Our neurologist feels the drugs work best when the disease is caught in the early stages. Mom is in the late portion of stage 6 (7 is the end). We just started the drugs. Since stage 6 includes a general awareness and ability to interact I want to keep her there as long as possible. So we'll play the long odds and take the drugs regardless of whether or not they're working. At least the doc's said they wouldn't do her any harm. This is a terrible disease. It's sad when you start wishing for most any other death to come take its place.
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Seroquel helps behavior only. Namenda, Aricept and the patch are "suppose" to slow Alzheimer's. How can that possibly be judged?! There is no control (identical person) who it can be judged against for effectiveness. My mom almost died from multiple applications of the patch. Aricept made her feel like she had 10 cups of coffee and Namenda did virtually nothing. Big Pharma rakes in the cash for these dangerous placebos and we are all falling for it.
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The ongoing question, Gorlin - how do we know what our loved one would be like without the medications? From what I've read, most doctors think that the medications help slow the development of symptoms for about 30% of the people who take them. There are variations on this, but you get the drift.

Balance that information with the side effects some people suffer from and it's not always an easy choice. I've heard from people who feel that the meds have been a miracle. I've heard from people who've witnessed side effects that completely negate any good that the drugs may do.

Talk over your concerns with the doctor. If you do decide to go with the drugs, remember that there is a time when the drugs are no longer effective, so in essence, more drugs simply mean more negative side effects.

We all wish there were clear cut answers to these issues. The fact that there aren't is probably one of the hardest issues to fact. Working closely with the doctor is vital. You may want to keep a journal of daily (hourly?) moods and behaviors so that you have some track record for comparing.

Take care, Gorlin , and please update us when you can. This is a problem faced by a large percentage of caregivers in this community.
Carol
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Tarajane: I'd be interested to know what Seroquel did for your husband? My 86-year old MIL takes Namenda and has for years. Her Alzheimer's moves slowly for which we're thankful, but as everyone has said here, there's no way of knowing how it would have moved along without the Namenda.
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Again folks, there is NO PILL that will erase the damages of dementia. When you see no difference, consider the side effects which could be more dangerous (dizziness - falling - breaking bones, etc.). Dementia is a terminal illness and doctors will prescribe the drugs to show they are doing something for the spouse/relative, but the end result is the same. Do not believe what you read, especially from pharmaceutical companies about side effects and efficacy. They are in business to make money.
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How many of you have given coconut oil, about 4 teaspoons a day for a a month or so and seen some good results without side effects? Just curious. I read of one instance that totally changed his father's life by doing this and restoring the memory.
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Coconut oil does more good for hearts and overall health, not dementia.
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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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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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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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I agree with ferris. Not sure about recovering memory .. Sounds like a sales pitch. Dementia destroys ...
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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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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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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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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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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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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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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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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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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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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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That is the doctor's job to know.
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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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I mean how dare the doctor put the job on you. You've already got the emotional task.
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