My wife takes Aricept, Namenda, Folic Acid & B-12. As I have been lookiing for more information online I have seen different information by various forums. One I saw said that they only work for between 2 and 12 months and then everything catches up to the disease where it would have been if they had not been taken. Can anyone clear up for me if this is true? My wife is doing well on them and has been taking them for just under a year now and I am concerned that I will wake up one day and she will be have a lot more problems because have stopped working. It will not change my love for her or that I am caring for her. But it would be easier to deal with if I knew in advance.
The one thing you need to understand is that everyone is different. Some loose ability faster than others. I wish I could know the future. I do know that my wife is not going to get better. I made the decision to quit my job and spend more time with her now. I will have to go back to work to get insurance coverage for her. Cobra only last 18 months.
Has your wife been getting social security disability? I found out that if she is under age 65 and disabled then there is a 2 year waiting period once she recieves benefits till she can get Medicare.
Anchor-welcome to the group. My advice-enjoy each day as it is. No one can predict the future. Many of the terrible things we write about on the site may never happen to your wife. There is security in being prepared but don't get bogged down in "what ifs".
As Doneit said be prepared is important. Anchor...yes it has been said that the drugs efficacy (fancy medical word for effectiveness) tend to wear off over time. But everone is different so relax and enjoy each day. However, the good news is that every day a new thought or treatment comes to our attention. For example after Aricept, next year the doctor might consider Razadyne. You should also read the comments about cinnamon and MCT oil, other nutritional supplements that help some folks. Things that you might wish to try later on in your journey.
Anchor, If your wife is doing fine on the meds she's on then don't worry. Everyone is different, so there are many people who do well for a long time on certain meds, it will have to do with so many variables that it would be impossible to predict. Good luck to you, it sounds like you are doing all the right things.
My husband has been on two dementia meds for more than 19 months. He has also been on a long plateau. He occasionally has a few bad days, and did during the last Full Moon, but he is back to what his normal was.
With one exception, everyone here who has taken their LOs off the drugs has not been happy with the results. That one person took them off because of bad side effects. The experience of the others is that when you remove the drugs they RAPIDLY go downhill to the point where they would have been without the drugs.
I've made the decision that my husband is staying on the drugs until he is unable to swallow pills. That happens in the end stage, and at that point he won't be taking medication for any of his other problems either.
One of the problems is that some of the testing that was done was only done for 6 months to a couple of years, so they can only claim that the drugs work for the amount of time that the testing was done. But that doesn't mean that they KNOW when the drugs stop working, because they never tested long enough to find out.
I agree, Starling. My DH has been on Aricept and Namenda since the beginning - 2003. I cut back on the Aricept a couple years ago to 5 mg. in a.m.; then cut back on Namenda last summer to 10 mg. in the a.m. also. He has been on the same plateau in all this time - except for just a very few bad days. I'm keeping him on them as long as possible.
Starling, not sure that is the case -there are a few more here who have taken their spouses off the meds i do think, because they were counterproductive for the type dementia their spouse had (FTD)?.. some of these meds will produce unwanted behaviours if given to the wrong type dementia as we discussed in other threads. and some drs arent even up on that fact yet. in my case, yes i chose (with neuros approval) to remove all AD meds for DH. he has vascualar/AD combo per dx//i dont think hes really slipped all that much and unable to say whether the incontinence wouldnt have surfaced anyway on the meds. i wouldnt want to lay the claim that all persons will decline at a rapid pace when the meds are removed. i think it may depend on the type dementia they have too whether the removal could be beneficial??just a thought and a friendly debate to your reply of course. divvi
Both Starling and Divvi are right. Some people tolerate the drugs without any problem; some cannot tolerate them at all. My wife vomited as soon as she took Aricept, but was OK on Razydyne and is OK with Exelon patch. There are some conditions, FTD, which are made worse by the usual AD meds. The problem comes when you wonder if they are doing any good. If you stop them, and nothing changes, they weren't helping. If you stop them and she gets worse, they were helping. Unfortunately, in this case restarting them does not bring them back to the previous condition. In my wife's case, even though I am not sure Exelon and Namenda are helping, I'm not going to stop them.
Starling mentioned not giving pills when he can't swallow them. My wife can't swallow the larger pills at all, and has trouble with some smaller ones. As a result, I am now grinding them up and mixing them with apple sauce, to which I have added 1 TBsp of MCT Oil. She does OK with this. One pill, her glipizide for diabetes, cannot be ground up, but is small enough that she can take it with her coffee.
i may also add that after removing the AD meds namenda/razadyne he was taking over 5yrs+.. the myoclonous jerks were not assoc to the AD meds. we removed the meds thinking they were the culprit. not so. he still has the MJ. afterfact, he could still be taking the namenda med with no side effect but the results in his demeanor were so noticeable so thats why we stayed off them. we were on the meds since they first came out aricept first. so we had been on them many yrs. like marsh says, some tolerate them some dont, we are led to believe by the pharmaceutical co. that they will digress bigtime if they come off them. in my opinion that may be true but could also be a ploy to ensure we keep buying the meds. many here have questioned whether they think the meds are doing anything or not but are afraid to pull them due to that very fact. and i also posted many times i would never take my spouse off the meds until the end as well as i was afraid of what ifs- personally -now this is just my opinion but my DH had many of the aggitation anger issues that others here show. and i think after witnessing it firsthand that the AD meds induce some of these behaviours in some individuals and not just the FTD ones. its a huge dilemma to make decisions either way. divvi marsh , i also crush pills he cant swallow. working for now.
I wouldn't count someone as being taken off the meds if they never tolerated them at all. I was talking about people who had been on the meds for some time. It is absolutely true that we don't know for sure if a medication is working or not. After all, I recently tried not taking an asthma medication and it turned out that almost immediately I felt better. Most of my problems were a side effect of the medication. I'm sure that sometimes also happens with dementia meds.
And yes, now that it has been mentioned, there were some people who got their LOs off the meds because of FTD. Namenda seems to work for those patients, but the other meds generally are counter-productive.
Divvi also has a point about some of the meds causing anger and agitation issues, and not just with FTD patients. But because it is so hard to get a hard and fast diagnosis for a lot of the patients, sometimes I wonder if the fact that the drugs don't work is almost a nudge towards finding out if a particular patient does have FTD instead of Alzheimer's or Vascular Dementia.
i agree with you starling. i do think after having my DH on aricept/razadyne/reminyl/namenda.. for so many yrs-..he suffered alot of the aggitationa nd anger issues thru that period as well. taking him off the namenda after 5yrs and seeing such an improvement in his behaviour leads me to exactly what you are saying. not just VaD/AD but possible FTD/or lewy body mixed in the punch. due to the fact none of these meds in my opinion really made any dramatic improvements after so many yrs. it is something to ponder. divvi
Thank you all for your time in replying. I'm not sure I understand everything you said, but it does up me to understand the basics. Kathryn did have some side affects for the first week she was on aricept (felt sick) however it was short lived and has not returned. I have no plan to ever take her off anything the doctor puts her on. Even if they no longer work, as long as they don't do any harm I will let her continue to take them. My reason for asking wasn't meant because I wanted to discontinue her meds at any point but because I want her to have the best quality of life I can provide for her by being prepared to handle whatever may come up in the future.
I have only what knowledge I have been able to get from reading the 36 hour day and whatever else I can get my hands on and from this site and one other.
I have found that you folks are more responsive than the other site and feel like you all care more. And for that I thank each and every one of you.
Anchor, there is a time when you do take them off things. I've discussed it with my husband's family doctor and he agrees NOT YET. But when it is hospice time, I'll ask the hospice doctor (who actually might still be the family doctor at that point). I'm pretty sure that once the swallowing issue starts, that is the time to start talking about no more drugs.