Our biggest concern for our Mom was that she was sleeping so much of the day and up wandering during the night a lot. We were hoping with medication they could help her get it switched around to be up in the day and sleep at night. We stay with her 24/7 but try to sleep at night, so it's worrisome knowing she's up stirring while we're sleeping and/or it keeps us awake and not able to get a good night's sleep.

She has a liver issue from a blood transfusion she got about 4 decades ago, so sometimes her meds are based on keeping that in mind. They had us try benedryl and that didn't do it. They had us try Namenda and she had side affects that made us take her off those. They weren't making a difference anyway, for her, in our opinion. They gave her Xanax and we only give her 1/2 a pill a day, as more than that made her seem way too drugged during the day. The last thing we've tried and she's on now is something called Galantamine. We might have seen a slight change, but not significant.

The nuerologist said he'd say she's about light severe, but he doesn't really go for staging. To me she has everything EXCEPT the final stages that I've read about; incontinence, trouble swallowing, not knowing us girls, not walking and not talking, so we still can be grateful that she hasn't had these issues.

My husband started on Aricept but was too zonked out. We switched to Reminyl (Galantamine) and he tolerated it well. He took Namenda the entire time. We stopped all his meds about a year ago. He was in the end stage,declining fast and our Dr. didn't think they were offering any help by then.
My opinion on the meds is ever changing. A personal choice

I just had an interesting conversation with my mother's gp last week. She looked me straight in the eye as she said, "these drugs don't heal the disease, just slow it down a bit. When is your next apt. with the neurologist? Maybe you can talk to her....." We were talking specifically of Namenda which I don't like. Mother will be 90 in a few months and at this point we don't which is worse; the aging, the alzheimer's or the combination. She's so miserable, I just want to make her more comfortable.

My hubby is on Aricept 5mg daily which he started on July 30th. We had about three good weeks followed by a few bad days and that is how it has been going now. A few good days then a few bad. His neurologist wants to increase the dosage to 10mg and eventually add Namenda. I am not really sure where he is as far as staging. I dress him mostly because it is just too difficult for him now with the confusion (shirt always put on backwards and shoes usually on the wrong feet). He sometimes forgets how to transfer from his wheelchair to the bed or car. I recently started giving him daily bed baths since he almost fell last time we tried to transfer him into the shower chair. He eats on his own and has a good appetite. He can usually hold a conversation but his speech is slower at times trying to find the words that he wants. He occasionally has delusions and auditory and visual hallucinations but this has decreased since Aricept added. He is on a multitude of other neurologic medications (Baclofen, Zanaflex, Lyrica, Buspar (anxiety) and Klonipin). He is also on three blood pressure medications and Oxybutin for bladder spasms. That is just the prescriptions. He also takes a multi-vitamin, calcium, Rescue 1250, aspirin 325 mg, colace. It is amazing to me sometimes that he is able to function at all with all the meds he is on. I often wonder if all the medications add to the dementia problem but because of his spastic paralysis impossible to wean him off of them or his pain is just too intense.

My mom is 90 and in last stage. She is on 10mg Aricept and has been for 8 years or more. Recent conversation with her gp was that even at last/end stage it slows the progression. He said from what he sees in practice is if I take her off it she will go faster to the end and he did not recommend it. The expense over the years of this and other meds is forcing me to make a choice to stop. Rather than stop the Aricept I'm now buying it through an overseas company where I can get generic. He said he was just as concerned for me as for what happens to her without the Aricipt since her decline will mean a lot more issues.

When I voiced my opinion which is I don't believe it does any good especially when so many people are going broke as a result, he became very irritated. He did say that the only way to know if from the caregiver accounts. I don't feel that's good enough. All research depends on the caregiver accounts.

Tried Namenda years ago when she was early middle stage and she slept too much and other side affects. Very expensive even going to generic. GP wanted to add it now but I said no. My mom does not wander (yet) and sleeps well. There are few behavior issues with her.

Ron is on:
....a CPAP mask for severe sleep apnea

....has a DDD pacemaker w/o defib for his sinus arrest w/ asystole

...is on Keppra and Lamictal for the grand mal seizure disorder that manifested with the heart episodes

(insufficiently monitored blood levels while on carbamazapine resulted in leucocytopenia and a one year stint with an oncologist to check for cancer...no it wasn't)

....has tried Reminyl thru the PCP, did not seem to do anything...
the new psychiatrist tried putting him on Namenda this past week and we had mini-hell, now off for a while to see if it was the Namenda reaction This psychiatrist also would like him to additionally be on Aricept

...is on Sertraline(generic Zoloft) for depression and Bupar for anxiety(it was the crazy now fired psychiatrist who took him off these that resulted in a 6 mo slide down the rabbit hole and into three hospitalizations, one for two weeks to get back on the meds..

...is on Reclast for osteoporosis (has had fractured vertabrae)...takes Calcium w/ vit D and takes a multivit.

...he is on nitro PRN for chest pain, and two baby aspirin a day

...he is on Zyprexa PRN for any really unmanageable behavioral episodes during the day only(this only happened when he was off the Sertraline and Buspar)


and a partridge in a pear tree...........

Thanks everyone...very interesting reading. I guess it is so-o true "if you've met one case of Alzheimers you have met one case of Alzheimer's" Different age, different stage , other illness... maybe even differnt for men and women. It is good to know how others do react to meds or what meds others have found success with even if just to open up the discussion w/drs as to whether they might help each of our loved ones if we see they have helped/harmed others. I have been reading that this "NEW" .23mg Aricept is good for the moderate-severe range as the 10 mg stops being effective when they reach that point. Yet to find anyone using it so far, may be too new. Thanks to all of you for your replies. If I find anyone using the new stronger Aricept I shall let you know.

I have heard the comments about going faster if taking them off the meds. AND.. after seeing this disease through.. I am wondering ...Do we really want this horror to last longer ? I know my husband would be mortified if he knew how he was now.. and he would not want to have put me and the kids through all these long, hard years.
Don't know... just wondering.

Judy ; As always your words of wisdom are powerful and thought provoking. What a horrid mixed bag this monster called ALZHEIMERS is! We are so trained to always fix things and try and make things better , but with this it doesn't get better does it..ONLY WORSE!!!!
Acceptance and LETTING GO , now thats something someone needs to write a book on!

just keep asking yourself..... what would I want people to do for me? Is this what I would want? What would they have wanted?

I try to do that to Deb. Personally, I'd want my Dr's to try everything that came down the pike. I'm a guinea pig. Always up to try things if they say it might help. Then again, I'll give it up in nano-second if I think it's NOT helping.
I just don't know, if at 90, it's worth lengthing the time of going through constant confusion, anxiety and frustration.

AGE definitely has a bearing! Its a toughy when your guy is only 68!

My mom is in mid stage
She was on Aricept ,but had a bad reaction.She now is on the Excelon Patch,it does seem to help a bit.
But she is at the point she is hating herself and what she is putting me through.
She just wants it all to be over.She understands she may have several more years ,in a worse state....I would like to see her continue her meds,she's not so sure.

Judy........you just about always end up saying what I am thinking and I guess have been afraid to admit that the very same thoughts often cross my mind. I don't know why because this group certainly would never judge anyone for feeling that way. After reading all the replies and looking at the multitude of unbelievably expensive medications that are driving us all to the poor house.......why?? Do we really want to extend the reach that this horrible disease has on our loved one and ourselves? Is my hubby's life better being on 3 blood pressure meds, 4 neurologic meds, and over the counter meds as well? With all the side effects of the medications and with questionable improvement, why am I working so hard to keep him around when he hates what is happening to him as much or maybe more then I do?

I really have to rethink very seriously just how aggressive I want to be before heading back to the neurologist in November.

I think this is how my experience has shaped my choices so far:

At first Ron did not have a definitive terminal dx, that came this past July, so up until then it was the battle of the docs (yes there were camps!) one side believing Ron had (ONLY) brain damage from the sleep apnea and the heart episodes and the others dx w/early onset Alz.

Various of the docs lines themselves up with one side or another and when I would ask them if they had called and consulted with the disagreeing docs they just looked at me like I was CRAZY.(I probably was/am.)

Well, in Jan of 2005 Ron, who had been teaching up until that day ended up in the ICU with(long story) a heart arhyhmymia, and at the second episode of this asystole was called. The ICU head doc told me "Your husband died last night...and we resuscitated him". Ron has never spoken understandably since then, from the brain damage.....and has been completely disabled, he never returned to work

This was when I faced the life/death issue. I thought to myself(and eventually got brave enough to ask) They just resuscitated someone form asystole(death is called) to sit in a chair and die of Alzheimers ??????????? yup they said. The doc I talked to was shocked that I seemed to have these thoughts.......as did his home health team etc.

It wasn' t pretty. Not very many people thought I was nice, Maybe I'm not,,,,

Believe me there have been some very nice moments with Ron after those terrible days and there is the presence of Ron for his son that is an issue too. I felt then and feel now that I cannot image the world, my world without Ron in it.

However, I make my decisions based on NOT prolonging. I will see his PCP and talk about these issues, (DNR, hospice)very soon. It breaks my heart but so does what is....

So, fortunately I am not God-- I would be doing a horrible job, but since that fateful day I have tried to make my decision both with the golden rule as has been talked about so well here and also on what does he need to that he will not be alive but much worse ie if he has a seizure and is in a vegetative state or fractures his spine from osteoporosis and is bedridden,,,,,,etcetc,


As quality of life leaves, may my resoluteness not fade....It is truly an awful positon to be in