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Old 12-08-2008, 10:14 PM   #1
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first post, serious question

i've been doing the duty of taking care of my 72 year old mother

diagnosed in 03 with every test in the world, and took her too every 1/2 year check up, and anually including mental for last five years


she has been on aricept and namendai since the begiining

right now, she is in middle late stage, she lives ar home with her 96 year old mother, and i live across the street, we have a health care worker 4 hours a day five days a week


in the spring her general practictioner misdiagnosed some stuff, and after 3 weeks they finally discovered my mother had pneumonia, this was a three month ordeal where in the middle of it, i really thought i'd either lose my mother or live again had totally changed, fortunately though she came out of it with flying colors

anyways, the question, it was so hard to get her too take meds during pneumonia phase we did the best we could, once she came out of it, she was dead set against taking meds, and i did not want too fight it, so i got lax on it

now, too make a long story short, ie, i'll cut out the details, she has been off meds for 6 weeks, and i am talking drastic changes, totally different women, personality, sense of humor, action oriented

she always had a high vocabulary and communication skills so the alz doc said this hides alot of stuff

either way, i mostly go by results, i know have a happy women who is upbeat all of the time, who now is five times more action oriented than the past 3 years

the downside as u can guess is the misguided stuff is much more prevalent at a higher rate, stuff like putting ice cream in the refrigerator, asking for a cup of coffee when one is in her hand, hoarding candy around the house, etc


at this point, no harmful actions


so, the question is, has anyone had similar expereince, and offer any advice

and from the same standpoint, am I getting into an area where I could create harm

thanks all

 
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Old 12-08-2008, 10:49 PM   #2
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Re: first post, serious question

I'm not sure how much that post has helped and intriqued me css1. I have heard other stories such as yours where the Namenda in particular caused behavior problems. Mom was put on Aricept and Namenda in October of 06. Since then, despite anti depressants and various other anti anxiety medications, even a couple of anti psychotic meds she is constantly in mental melt down with floods of tears. She is easily aggitated, goes on rants, and pitches major southern hissy fits. This behavior is actually out of character for my Mom. Like your Mom, my mom is highly intellegent and we were also told that her intellegence has mask some of her inabilities. We tend to blame it her emotional disturbances on her awareness of what the disease is doing to her even if she doesn't truly realize she has the disease. I have seriously considered taking her off the Namenda at least if not both meds.... if for no other reason than stories like yours and the possibility of regaining my happy mother..... even if confused.

I would love to hear the details of the differences between how your Mom acted on the medication and how she is acting now. It would truly be helpful to me.

Now that my excitement has wained a bit Welcome to the board. I truly hate that you need to be here but glad you found us. As for doing harm by taking her off the meds. Namenda and Aricept do their best work in the early stages of the disease. The earlier the better. It does not stop or reverse the disease. It only claims to slow the process in some patients. If your Mom has changed for the better without the medication how can it be doing harm? My thoughts on the subject..... If you slow the progression but your Mom is miserable on the medication then is she benefiting from the medication. You are going off of what you see and you see a much happier Mom. What is important? Whether she remembers that cup is in her hand, or whether she is happy asking for another cup while she holds one That's just my personal opinion and hopefully others will give their ideas as well.

Again.... welcome to the board and I hope to hear more details on your situation.

Love, deb

 
Old 12-08-2008, 11:08 PM   #3
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Re: first post, serious question

thanks deb,

for some background i'm passionate about knowledge, so when this happened i sucked up as much as possible, encourged the rest of the family, and no one followed, lol, even though i'm a leadership trainer

how my mom acted?

well, pretty much as the stages are set out

i'd say back in 06 we went thru six months of "agitation" i chalked it up too the lose of the part of the brain that filters all thoughts before you speak, so we were getting alot of what i would say "mean speak" from an angel, and never had a bad word to say of anyone in general, except for personal pet peeves we all rant about at times

07 was imho just total zombied out, majority of her time was spent on the couch doing almost nothing, she'd read the paper, over and over obviously, lol, and watch TV and have no interest in anything, the no interest in anything did concern me

08 i took her off meds and i thought it helped, yet, when i let the cat out of the bag i got guilt tripped into putting her back on, the who the heck was I, a damned doctor, i did not know....................anyways back on, more zombie stuff which got worse with the pneumonia

The most distinguishing fact I like with her being off the medications is how she handles "the wrongness stuff"...............when she would be zombied out and do something like the coffee, when u had too explain the coffee situation you could see by the body language that it was almost like slapping her in the face, now, the coffee stuff is a laugh and chuckle, it rolls right off her back like water on a duck

why i post all this stuff, is that old saying, the husband comes home with lipstick on the color and says to the wife, who u gonna belive me or your lying eyes

the thing is I am seeing these changes, they are real, not made up, and it's like u say, which has always been my mantra thru this whole thing, u have too balance risk verse reward, and first do no harm

I've dealth with so many doctors over so many things in the last ten years, I get this feeling so many of them are lawsuit shy now, that too even consider thinking outside the box can harm them.

I know if I called and asked her doctor, who is great, and she loves, i'd get "a speech" versus any real help in the road ahead.

 
Old 12-09-2008, 05:08 AM   #4
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Re: first post, serious question

Thank you for your very interesting posts. I am sorry your Mom has dementia, especially as her mother is still doing well at 96; it seems unfair. But then, what is fair? (Yes, the State Fair in August!)

I am intrigued by the improvement in your mother's mood and life style since she got off the prescription drugs. I have long believed that the side effects of almost all prescription drugs make us worse in the end, instead of better. Yes, I suppose antibiotics kill germs and shorten or cure strep throat and other bacterial infections .. but at the expense of having produced supergerms that no one can treat.

My Mom was one of those proud healthy old ladies who bragged about her refusal to take any drugs. This went well until she was 93 and had a heart failure episode in which she nearly died. The hospital saved her life and put her on 6 (SIX!) prescription drugs. Three months later her clear mind was foggy, she was getting lost, acting strange, putting things away in odd places, etc .. all the symptoms of dementia.

Taking her off one drug helped a little.

But her downward spiral began and was not to be stopped until she didn't remember how to chew and swallow, and died of Dementia at 99.

I wonder ... often .. would it have been better to let her go at the time of the heart failure episode? They saved her life. But she changed from a brilliant, active, athletic and chatty, wonderful happy and friendly person to a wreck of her former self. Her life went on for 5.5 more years but what quality of life? Or, could they have spared her life and NOT had her taking 6 strong medications every day?

Are pharmaceuticals a curse or a blessing?

Wishing you luck,

Martha

Last edited by Martha H; 12-09-2008 at 05:10 AM. Reason: sp

 
Old 12-09-2008, 06:07 PM   #5
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Re: first post, serious question

Thank you css!!!!!! I have noticed some of the same side effects that you described with Mom. She is on edge all the time and something as simple as not having Christmas cards at her finger tips the moment she thinks about it sends her over the edge. It has been one melt down after another and this from a lady that was a rock through some very hard times. She was the most caring person you would ever meet and since these meds she could only be labeled as "mean". They keep upping the anti depressants and adding anti anxiety and anti psycotics to her list of meds. I want so badly to take her off the Namenda and Aricept and see what happens. When I brought it up two of my sisters pitched a fit that equaled one of Mom's. One sister mentioned it to one of the AL staff and was told it was "an ethical question". I'm not sure what that is supposed to mean?!?!? They didn't want to even question the physician but I insisted. The physician actually said it was a possibility!!!!... but wanted to increase her anti depressant first and see what that did ARGGGGG Now the anti depressant has been increased again in the last week. Mom sits in her chair, reads articles until she stops and then never picks them up to finish them or just watches TV. We have a hard time getting the previous social butterfly out of the room. I am going to mention it again and see how much of my head gets bitten off this time.

Martha, I can also relate to what you said. Dad's decline started with heart issues. They finally labeled his as Vascular Dementia because it definitely is not following the ALZ pattern. At some point in the past he was taken off all of his heart meds... and his dementia stabalized. The latest round of AFib has brought another slide but the GP, over the heart specialist recommendation, has him back on heart meds. ARGGGG It is hard to tell if the problem is the circulation or the meds..... we shall never know.

Then there were the steriods that Mom kept being put on. She was having strange episodes of confusion and even adrenial reactions that mimicked heart attacks. She actually had Prednisone psychosis.... about the same time her dementia began. Her last reaction lead to a heart cath. I do wonder if there is a connection....

Myself, I had a nasty reaction to a Statin. The lipator I was on gave me definite dementia symptoms. Memory problems, anxiety, paranoia, personality changes... the entire list. Thankfully, I went off the meds and returned to what I guess is almost normal. I know there was a connection between my cognitive decline and the cholesterol med. The scary part... I was not aware of the changes when they were happening. It was my best friend that noticed, and sheerly by accident that I forgot my meds on an extended trip. On the way home I realized I was singing to the radio remembering song lyrics. It was the first time I had been happy in a year. So I didn't start taking the med again and gradually improved. I never knew I was going down hill but after 10 days I knew I was down there and coming back up.

It truly makes you wonder!!!!!

Love, deb

Last edited by Gabriel; 12-09-2008 at 06:11 PM.

 
Old 12-10-2008, 01:46 AM   #6
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Re: first post, serious question

wow, this is great, thanks for all the replies

on a sidenote deb, there are some studies out lipitor can harm some folks memory severly, it's one of those you got a thousand folks with horrible stories, and doctors and such say no real anecdotal evidence


on stopping meds, especially anti-d's, imho, the best medicine is FOOD, i think the most common reaction to sixes and seven's those med cocktails is almost always you have no appetite, with no appetite body cannot heal thyself, eat what it needs, so yeah, u get these meds but loose all nutrients u body got for 70 years

it is so cool that doctor said it was a possibility

god, can we tell some stories, i loved the christmas cards, so heart warming

 
Old 12-10-2008, 07:14 AM   #7
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Re: first post, serious question

Part of my concern is in the "that could be possible" response I get. I stopped the lipator and refused to take it..... and got so much better. All I ever got was a "that could be possible" from the doctor. When Mom's doctor was ask about the Namenda and Aricept related to her recent temperment I got a "that could be possible" but she's still on it. With Mom and the steroids I got a "that could be possible" after the prednisone psychosis but then they put her back on it for another round which lead to a heart cath. I truly believe in weighing the benefits against the risk but..... it makes you wonder.

Love, deb

 
Old 12-10-2008, 05:17 PM   #8
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Re: first post, serious question

My husband was diagnosed with Progressive kidney failure in 2003. Sometime during 2004 he was taking Lipator. He couldn't even walk from the car into the house without assistance. This man who up until his death always helped out with the kids and the house stuff, did the shopping, etc. he couldn't even move out of the recliner.

When I called his doctor he said he didn't think the Lip. . . was an issue. I started freaking out all over his a*s because I was sick of hearing and seeing this vibrant man become a shell of himself!. The doctor -- who I was screaming at -- said I was a selfish b*tch who was spoiled by having a man do things around the house most other men won't do. I was at a lost of words, I couldn't believe it.

But he agreed to at least try to see if it was the medicine so he told my husband to stop taking it immediately. it took 3 days but wow! I got my husband back. I didn't want him doing what he use to do, I just wanted him not to be in such pain with his muscle pain, etc.

So if in doubt, take a chance and stop something for a few days. If you see radical change then you know its that product!. i work for the pharma industry and we have about 3 products just related to allergies symtoms. Why? if one would do well. So folks, if in doubt, don't rely on doctors, you must be an informed consumer.

 
Old 12-10-2008, 09:45 PM   #9
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Re: first post, serious question

caring,

imho, it's just plain simple logic, and u r right...........if u stop and u get a different result that is positive that is positive, a real change

it's like dgabriel said, alot of the response is, "it's possible", well, heck we kind of know that, lol, it is why we ask

what we are searching for seeking is confirmation that we are on the right road, due to the fact we are on a road we have never been on before

i ended up haviing to look in my phone book for a number today and came across my cousins number who i had not talked to in 14 months, so i called her, we talked for two hours....great person...........and she so nailed me, lol, i got no qualms about the stuff i'm doing, i got no qualms doing it alone, yet, i'm like everyone else, at times i need some confirmation i'm on the right road, cause up ahead is dark and what is behind me is so different than where i'm at now, at times certain steps seem like one big guessing game

and just getting a bit of feedback that says, yup, it is one big guess, you're seeing it right is enough, and since we are all human and selfish at times, i do have my two year old moments, i want my hey it's okay, seems good too me, now

thanks again for replies

 
Old 12-11-2008, 12:35 AM   #10
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Re: first post, serious question

I can SO relate to your hubby's situation Caring. Just before I started taking the lipator I was in Maryland visiting with friends. We spent a day climbing mountains, walking around Gettysburg, walked around DC.... I even beat all of my friends up the mountain... except a 30 something year old fireman and I stayed up with him. A year later... I couldn't walk 100 yards down the beach without stopping. I could not sleep without my Tylenold PM and even ask the doctor for a prescription sleep aid. The muscles were always hurting somewhere.... and it moved from place to place. Hips one day, ankles another, knees for a while..... Combined with the cognitive and personality changes.... I was a MESS!!! Then I stopped the meds. When I finally went to the doctor it was with determination that I would NEVER take them again. Now my 20something year old daughter has to slow me down on the beach and tell me it's time to turn around..... and I ride my bicycle 10 miles at least 3 times a week. And I think I have my brain back

Doctor's are body mechanics..... they have a general knowledge but they don't know your body. I see what they tell me as suggestions rather than orders now. It is up to me to decide how it makes me feel, if it is really beneficial, and I am the final say on what goes in my body! I listen to them, but I also research and pay attention.

The best thing to do is make friends with a good pharmacist. I have one that is honest and caring.... and will tell me things about meds that doctor don't have a clue to. I would rather talk to my pharmacist than my doctor about meds

Love, deb

 
Old 12-11-2008, 05:19 AM   #11
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Re: first post, serious question

Believe it or not folks, you should always talk to your pharmacist AFTER talking with your doctor.

The doctors sees many different people and can easily get mixed up on what is going on with one patient after another. They can't switch their minds off and one instantly, and please folks -- they are human -- not God.

Definitely tell your doctor all the medicine you are taking from either OTC or another doctor. And I hardily recommend you get one primary doctor as your traffic cop that all results from other specialists come to. It'll help define and explain everything better. When you hope around from one doc to another because one may not be telling you what you want to hear, you are doing an injustice to yourself and putting yourself through more tests and more consultations then you need.

Only change if the primary 'point-person' doctor is not doing you right and then make sure you damn-well take your medical records with you from that doctor to the one you now select. Again, not doing so just causes you more pain and frustrations than necessary.

BUT back to the subject -- you should always develop a personal relationship with your pharmacist. Certain fruits or juices can not be taken when on certain medications. Also some medications counter-act others.

SO folks, as I said in a previous thread -- talk, talk- and talk some more. Ask the questions, write notes down in a pad, keep a diary of what you are taking, in what dose, how many times a day, etc.

 
Old 12-11-2008, 11:45 PM   #12
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Re: first post, serious question

DG,

This was all from Lipitor?

wow.

My doctor wanted me on it and i read up on it, and i said to him a side affect is muscle weakness, and he said oh it's not a big thing if u get it, we can change

Well, it so happens physical is my middle name, and it pays in certain ways, so i always put him off, he gets on me about not being on it, and i just have this weird FEELING like don't do it................now, that is weird in and of itself, cause i'm not anti-drug at all, but just on this one

just kind of weird



Quote:
Originally Posted by DGabriel10 View Post
I can SO relate to your hubby's situation Caring. Just before I started taking the lipator I was in Maryland visiting with friends. We spent a day climbing mountains, walking around Gettysburg, walked around DC.... I even beat all of my friends up the mountain... except a 30 something year old fireman and I stayed up with him. A year later... I couldn't walk 100 yards down the beach without stopping. I could not sleep without my Tylenold PM and even ask the doctor for a prescription sleep aid. The muscles were always hurting somewhere.... and it moved from place to place. Hips one day, ankles another, knees for a while..... Combined with the cognitive and personality changes.... I was a MESS!!! Then I stopped the meds. When I finally went to the doctor it was with determination that I would NEVER take them again. Now my 20something year old daughter has to slow me down on the beach and tell me it's time to turn around..... and I ride my bicycle 10 miles at least 3 times a week. And I think I have my brain back

Doctor's are body mechanics..... they have a general knowledge but they don't know your body. I see what they tell me as suggestions rather than orders now. It is up to me to decide how it makes me feel, if it is really beneficial, and I am the final say on what goes in my body! I listen to them, but I also research and pay attention.

The best thing to do is make friends with a good pharmacist. I have one that is honest and caring.... and will tell me things about meds that doctor don't have a clue to. I would rather talk to my pharmacist than my doctor about meds

Love, deb

 
Old 12-12-2008, 09:22 AM   #13
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Re: first post, serious question

Yes, it was all from the Lipator... and the scary part is that other than the "muscular discomfort" I was basically unaware of the other changes until I was off the meds. After I was off the meds for a while, and gradually improved, my doctor admitted that it could have been the Lipator. It fit with a lack of Cholesterol to the brain and muscles.

So instead of taking meds I have lost 60 pounds, changed my eating habits, and bought myself a bicycle.... and will live well with whatever level I end up with

Love, deb

 
Old 12-13-2008, 02:32 AM   #14
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Re: first post, serious question

you know DG,

that makes sense to me, imho, that''s problem with my doctor he did not expalin the proper why, cholestrol is a main building block of testosterone, which low t, are all thos sides

 
Old 12-15-2008, 11:16 PM   #15
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Re: first post, serious question

quick update,

well, if we were all sitting around and I used the term miracle, i'm sure we would all take it in the correct context

We are now six weeks with no medication. I shake my head, and mumble miracle. She is here, in the moment, very congnitive, she answers all quesitons rationally in her limited way, she cracks a joke, empties the diswasher correctly 75% of the time, and on and on and on

Twice in the last week whe i have asked, "How are you doing, ma," she replies "Mah-velous, just mah-velous"


on my side of the street you can't say it in that perfect tone of voice unless u really feel it

i have not heard those emotions from her in................3 years..............

 
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