My husband has been on 10mg of aricept for over three years now. In August he had a complication to the medication and the Dr. took him off of it. The complication cleared up within a few days and the Dr. has not started him on anything else. The only change I have noticed to date is that he is not as agitated as he was while taking aricept. I was just wondering if any one else out there has removed their loved one from aricept and if so did you notice any change. I was afraid he would spiral downward faster. I guess more time is need to see what the results will be. Thanks for any info.
Marilyn... Johns was taken off aricept after a near fatal stomache bleed. That was in Oct. He is declining but I believe that's the course his dementia was going to take no matter what. Not much help to you. cs
The doctors say that when taken off Aricept, the decline accelerates, but who really knows? Sid has been on Aricept for 3 years, and I believe it stabilized him for at least 2 years. He's declining, now, but I'm not going to take him off of it. He has no side effects from it.
We have had people who had good results taking their LO off the drugs, and others who had bad results. One thing I've noticed that if there has been a lot of agitation and violence sometimes taking them off works better than if they have been calm.
DH had terrible diarhea on Aricept, so after three weeks the dr. took him off. The first day off the med he was upbeat and cheerful. He may be put on the Exeloln patch. We'll find out next week. The diarhea had made him very depressed, so I called the dr. and he saw him that same afternoon. We are really lucky with the dr. we have. He's a PCP with a specialty in geriatrics and is so very understanding and patient.
When Claude started hospice care last November, the hospice doc took him off both Exelon and Namenda. Within days, there was a rapid downward spiral. We requested he be put back on them, but it didn't make a difference and he continued to decline.
It's not easy knowing when to do the right thing. At this point I'm afraid to have him start another med. I do know that the bleeding was very scary and he seems happy and content not taking anything at this time. I thank God for the good days that we have and ask Him for the strength to get me through the others.
Neuro has taken hb off Aricept and put him on the Exelon low-dose; however, when she saw him Monday, she gave us an Rx for higher dose of Exelon. He's declining rapidly. I asked if he thinks I should quit work (I work 3 days a week), and he said he didn't know; that was entirely up to me. I explained it wasn't me, it was for him. Still doesn't know. He mostly just sits and holds his dog now. Got all dressed up for church yesterday. I keep a calendar out, and he'd glanced at the front page of the paper; so I was surprised he tho't it was Sunday. I assumed he'd looked at the day/date. Silly me. Neuro said he should keep to a routine and do detailed things. Asked if he could take a grocery list to the store and find the stuff on the list. I said he doesn't drive, and no he couldn't find things w/o help. I'm supposed to let him try. Then he'll get frustrated and upset w/himself. What a fine line we walk. Can relate to Joan's blog today--very rapid decline now.
Zibby, this sounds to me like very old-fashioned advice: nothing makes my dh unhappier and more frustrated than giving him a task he can't do. Why should he try, does she think that if he is challenged and made unhappy he will be able to do more or learn to do things he's forgotten? I thought that the medical profession had more or less abandoned this approach. I can make dh much happier by encouraging him to do the things he still CAN do. He likes to cut boxes in tiny pieces for the trash so I put them in on a chair beside the trash in the kitchen and he is delighted to find them there and regards it as an important duty. It gives him satisfaction when he does that, keeps him busy for a while and we are both happier. This afternoon it backfired on me. I asked him to fix us an apple, because one of the things he can still do is divide an apple into 8 pieces with an apple splitter. Then we each have four sections. He came back to me after a long time (I thought he must have forgotten about the apple) with a pan containing about six big apples, all cut up. He misunderstood and thought I wanted to make an apple pie. So we had apple crisp for supper, it was actually very nice.
Jeanette, that's another alrighty moment! At least he still knows what "apple" is! And just maybe he really wanted an apple crisp or pie - rather than just an apple??!! Who knows??
JeanetteB, you're so right to minimize opportunities for failure is a better approach, I think. That's what I've been reading, too. I'm still too timid to tell a dr what I think and observe. By the time the journey is over, maybe I'll have developed a backbone. At any rate, I'm not following her advice/request.
Asking someone to find items in a grocery store involves sequentioal instructiions. Suppose you put Nabisco Honey Grahams on the list. Task #1 is to find the aisle where the graham crackers are. #2 is to find the section where they are. #3 is to find the ones that say Nabisco. #4 is to find the Honey Grahams among the several selections that Nabisco offers. If I did that I know he wouldn't bring home the right thing, but I'd pretend it was just fine. Then I'd think seriously before I asked something like that again. Much better to encourage the things that CAN be done.
Yes, Pris, very true about the sequential instructions. I find that even being in the grocery store is sometimes too much for DH. Too many stimuli coming from all directions, it's easy for him to get upset and angry (at least it was before Risperidone). But he always wants to go along and it is a bike ride and an outing so we go together. I only shop at one supermarket and one big green grocery so that we know where everything is and it's all familiar. It helps if I make an effort behorehand to look at the ads and have a clear idea of what I want to pick up. We have a routine where he picks out his bananas (he makes a beeline for them but it takes him a while to choose exactly the right ones) or grapes while I dash across the aisle to get his yogurt (he would choose the regular instead of sugar-free if he got the choice.) Then I ask him to choose a bottle of wine while I'm getting some other stuff and then I ask him to get the bread (always the same kind). So he gets three items, always the same ones, while I dash around and try to get the rest of what I need. I can ask him to watch the cart for me while I go look for something, as long as I don't take too long. Then at checkout he won't put the groceries directly into the bags (we do our own bagging here) but always puts everything back into the cart and then goes over to a little shelf where he repacks everything carefully (not not logically) into the bike bags. This used to drive me crazy, now I accept it and just help him. I used to be very stressed during these trips, just hoping all will go well. Now that we have the routines established (and now that we have Risperidone -- do I sound like a broken record?) I'm more relaxed.
Jeanette your ideals of focusing on what you know DH can do is commendable. very few drs really get what dementia is about i believe and rely on text book theories that have been passed out in psychology class:) ok, maybe a CME class:) to be fair:)
one thing i have learned is to do what fits your spouses needs and yours. you know them best. most of the best advice comes from those in the trenches right here walking the line with everyone else/personal experiences speak volumes. professionals or not. we go with what works and hard lessons won. divvi
Right on, divvi, as usual. Don't know what I'd do without those who have walked and are walking this long road. Thank God for this website and for Joan's hard work in maintaining it.
I agree with everything you've said about the meds. Personally, I don't believe the drugs do anything. I had my DH on Aricept, but there were side effects ... also with Namenda. Then the dr told me about the Excelon Patch. I faithfully administered it for 2 weeks. My DH became so confused and began saying things he never said before. I would say there was a definite decline. It worsened the situation. So I took him off it. The fact is there is NO cure for this dreaded disease. As a matter of fact, they prescribe the patch for Parkinson patients. So now, the affected person not only has tremors, he/she has confusion to deal with. What's wrong with this picture???
Emily, I ask the same question ... Do I want to slow this down? It's all so painful. I hate what it has done to our relationship. As a matter of fact, there hardly is any relationship. I can't discuss anything with him or ask his advice. And as far as reacting to what he says ... most of the time it doesn't make sense, so I just listen. But there's hardly any intelligent interaction. I miss what we had ... we were so good together.
Divvi your right. We, the caregivers, know what's best for our spouses, and yes, Vickie, thank God for this website and for Joan's developing and maintaining it.
PrisR and all the other ladies: I don't, for the life of me, know how you all can express my feelings and experiences so well. You don't even know me. Also, it looks to me like no other men have commented on this thread so I am hesitant to do so. But, not hesitant enough not to do it. Oh Well, I do thank you for your patience.
We (the neuro and I) had to discontinue aricept several months ago because of diarhea. Terrible, no matter where we were or who we were with. I have cleaned up many messes, but, it didn't bother my wife. She could have an accident in Walmart and have no regrets. But, I did. We started the Exelon patch 9.5m but I don't think it is doing any good. However, no diarhea or other side effects so thats good.
You mind readers, or soothsayers (take your pick) also discussed the grocery store experience which I had just an hour ago. My DW will buy almost anything they have on their shelves even if we just bought the same thing yesterday. And she will buy things and wonder where they came from when we get home. She did this this evening and I decided that enough is enough and told her that we weren't going to buy them, that we bought the same thing yesterday. She was furious in the store and walked out leaving the items on the counter. I apologised to the nice clerk and put them back on the shelf. When I got to the car, she was crying her eyes out. Maybe I didn't handle this right, but, I have been just going along with it and that was bothering me worse. So, I guess - what do you think?
Another part of my problem is that the Dr says not to leave her alone, so I almost have to take her with me. You don't know how I hate those words 'don't leave her alone'.
She is also declining ( I think rapidly, but, I don't know what rapidly means) and has started telling me how much better she is getting. ( Sorry, I repeated myself from yesterday).
This is only two our of the last three evenings that she has ruined with her rages and outburst. Oh Well....
Dean - whether any other men post on a thread, if you have a need or have input please post. Both are valuable to us. As you find others post helpful, you never know who will be helped by yours.
I think you did what YOU needed to do at the time. I agree with what you did and that you went the extra step in putting all the stuff back. I really see no other way to handle it. I don't know your financial situation, but for me the money would be the big issue for not buying things that were not needed.
As for the mess at Wal-mart, I don't think I would be able to handle that. I would be so embarrassed - one thing when it is a child, but for an adult even if sick. I just pray I never have to face such a situation.
Dean, I have admired all your post regarding how you handle it. I know my husband would never step up if the situation was reversed. I know because when I had surgeries in the past, he was not there to wait on me.
Dean, please keep posting, be as wordy as you want. It's unreal how so many posts seem to relate what just happend in our own lives, isn't it?
My DH used to love to grocery shop but his physical limitations have about put a stop to that. He probably hasn't been to the grocery in over a year. Don't know your particular situation but is it possible to get someone to sit with her while you run to the store? I think you handled everything just fine, like Charlotte said, you did what was right for you at the time.
On another thread it has been mentioned about the little cards explaining that the loved one has dementia and please excuse or thank you for your patience... maybe something along those lines would be helpful to you. You could have handed one to the clerk and left the items for the store personnel to put away.
Bravo for dealing with the messy Walmart experience. I keep thinking if (when??) that happens with DH I will just disolve on the spot never to be seen again <grin>
My wife was on Aricept for several years and has been off for a couple now. I don't remember too many side affects, I just know I could not tell the difference on or off. If there was an improvement I could not see it, and if there was a decline after we took her off of it, I could not see that either.
My pharmacist said he was a little doubtful about the effectiveness of these AD drugs. In our case i could not begin to justify the cost.
Dean, please don't worry about being wordy. We can all relate to what you say and we all need an outlet. It's good to get all these thoughts out. Let's face it, we're all dealing with a horrific situation. We know it's bad and we all know it's only going to get worse.
I admire how you handled the Walmart situation. A child's accident is one thing, but an adult's is so bad. I don't know what I would have done. Probably like Weejun would have disolved on the spot.
Please don't hesitate to let out whatever feelings you have. We are all here for each other.
I wish they would find a cure for this disease. I am also so sick of these Aricept , Namenda, Excelon commercials. TV time is so expensive. They should be spending the money on research instead of paying actors and TV people to promote medication that doesn't even work. If I sound bitter ... I am!
DEAN, I agree with Weejun that it might be an idea to put the items that you don't want aside when you check out, hand the cashier a card explaining about AD and leave them to put the stuff away. It's just one more way of asking for the help that we need. Did the doctor explain why you should not leave her alone? Is he afraid she will hurt herself or get into mischief? Do you agree? It's such an easy thing for a doctor to say, now he's covered himself and has left YOU with the responsiblity of getting your errands done while never ever leaving her alone. I agree that you need to try to find help so that you can get out alone. I have not reached this stage yet and I do leave him alone. But once a doctor says "Don't leave him alone" would I dare to do it even if I thought it was OK? Probably not, if I thought the doctor had enough insight into his condition to really be able to judge. Leaving them alone is always a risk. Probably most of us do it till something happens to convince us that we shouldn't. The proverbial wake up call.
I have had one doctor (neuropsychologist) tell me I shouldn't leave my husband alone and another (neurologist) tell me it was okay after doing a little test with him. The neuro asked him a question regarding what he would do if there was a fire and he couldn't get out of the house but the phones were working. When my husband said he would call 911 for the fire department, the doctor said he could be left alone for short periods. If he can't keep himself safe, that is the time he should not be left alone.
Deb, I agree to a point. My DH would also KNOW what to do in case of fire - but I believe he would get so confused he would not remember 911 or forget how to dial. That's what scares me in leaving him alone.
Dean -if your DW has had one mishap with incontinence while you are out and about it is time to consider putting her into depends and double ones when you are out. i go as far as to put a plastic pant over the depends to avoid any mishaps out in public now. its working beautifully. even if DH has an issue its ok til we get home:) without elaborating the facts here:) i think you did right and just setting the unecssary items on hold at the counter checkout. i think i would maybe allow DW 'one' pick? (hold up two and ask which one to keep?) so there is some compromise and shes happier. these days none of us can afford to poop off (sorry, cant resist) our extra cash on unnecessary items we dont need.
i also agree if the DR has said dont leave her alone its for a good reason and you should probably now be resigned to checking into home health (or a neighbor/family) that can offer you some hrs /wk to get out and do errands without having to take her along on every outting. they do tend to get overwhelmed some in large stores bright lights and lots of hustle and activity going on. divvi
Dean will she stay in the car? In the back seat, with something to play with or listen to, and you run in and out? I find that I do a lot of European-style shopping now - buy bits and pieces of stuff from different places; I almost never go to the supermarket. Or I go when the CNA is here.
my wakeup call on leaving them in the 'car' thinking they would stay...
i did that for a good while until one day i came out after 5min in the rx to get meds and DH was no where in sight. panic isnt the word.
i found him 'looking for me' over 2blks away wondering the parking lots.
when it happens to you the first time you will be distraught bigtime. to get that far in such a short time he had to have left the car as soon as i was out of sight! eeekkkkk...(nikki))) divvi
I don't leave my DH in the car while I go in a store for anything. He would probably be okay - but he could still be taken advantage of by someone, just sitting in a car alone.
PatL = I agree on the commercials. They are saying that it is not a cure, but when the person goes on the drug they miraculously are 'normal' again. How misleading that is and a bunch of crap. I know of no one that has become normal. I don't think the galantamine is doing anything for my hb = he is still going downhill: went from 27 (aMCI) to 23 (probable AD) in less than 6 months and I think he is still loosing ground in his short term memory.
My husband was on Aricept and was doing much better. He is now off of it due to funds being different now. The change since he has been off is horrible. He is declining and it is a very scary thing to see. Short term memory last maybe 30 minutes. He has major problems making sentences that make sense. He tries hard to talk and make sense but gets really angry with himself and that only makes things worse. He had no negative side effects from the drug and I can't wait until we can start the Aricept again. In my dh case, they are a blessing.
Thank all of you so much for your input: My DW has almost set the kitchen on fire and has fallen down twice recently. The second time, she broke her ankle and had to have surgery. They tell me to turn off the electricity, take the sharp knives and matches out of the house and on and on, but , I haven't done all of that yet. The falling is the most recent concern. I have hired a group called Visiting Angels to come two days per week so I can get away for a few hours. Very expensive ($16.00 per hour) and I resisted for a long time, but, I finally gave in. I just can't depend on friends and neighbors even tho they say they are willing. Then, the Methodist church has a program called 'Helping Hands' for 5 hours on Tuesday that only cost $15.00 that I use. Wonderful program. Wonderful people. Almost makes me wish I was a Methodist. It looks like the nursing home is going to get the money anyhow, so I might as well let go of it.
I feel like I was driven to the grocery store episode. I had just put up with it so long that I couldn't stand it anymore. However, it is my nature not to make a scene or cause a problem is public, so I regretted that later. Our altz asso has some of the cards to hand out and I need to get some and use them.
I wish you could understand how my wife was before Altz. She was a classy lady. Every hair was in place. Never went out without proper jewelry and makeup. Kinda snobbish, uppity and expensive and spoiled. Excellent shopper. Now, those things aren't important to her anymore. I have to be sure that she bathes and puts on clean clothes. And worst of all, she has no regrets about accidents in public, some incontinence, passing gas or going out without combing her hair. It embarrassses me, but, not her.
And, there isn't anything I can do to get her back.
Speaking of leaving DH alone in the car, i was at the store with him, and he got tired, so he said he would wait in the car. I was already getting set to pay, so I agreed. Of course, I came out andhe was not in the car. I looked to the passenger seat, and 4 cars to my right I saw my DH sitting in a strange car. I hopped out, and went to him, it was an SUV, white, we own a green sedan (for 10 years). he thought it was our car. So leaving him in the car, or wherever, is not such a good option.
Dean, that is really sad about the change in your DW. I would love to have known her. I'm not at all classy but I admire people who have a good dress sense and are good shoppers. No, there isn't anything we can do to get them back. (((HUGS)))
mammie--some of the pharmaceutical companies have discounts or free drugs for people who can't afford them. I don't know about Aricept--but you could check into it to see. The companies certainly make enough money, they can afford to give some of the drugs away.
P. S. I just Googled it quickly and see that Pfizer has an Aricept Patient Assistance Program, for people who don't have drug coverage. Check it out.
Dean, When I take DH to the grocery store with me, I make a list before hand and always stick to it. He doesn't like shopping that much, but cannot be out of my sight. I think he panics if he cannot see me. I think you are doing wonderfully with your wife. This is such a sad disease. I wonder now about all the meds my husband takes. What is the point of the cholesterol and heart and AD medications if they only prolong the disease. He takes 6 daily medications and the neurologist wants to add two more. Notheing seems to make a difference.
thanks marilyninMD. I am in contact with them and as soon as we get a new doctor, we just moved, I will be able to get some meds for my dh. I appreciate all information. Hope you have a great day....
maryd, the only thing that seems to have made a difference for us is the Rsiperidone. It's early days yet, but this seems to relieve dh's anxiety so much that he is happier, pleasanter, nicer, easier to manage. If I had to choose between this drug and the Exelon (or anything else he's taking), there would be absolutely no contest.