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Increasing Aricept opinions please!
lesleeb
Posted: Wednesday, January 4, 2012 9:00 AM
Joined: 12/19/2011
Posts: 469


So, mom is only on 5 mg aricept (well the generic form) and her doc said we could increase to 10mg. She also takes 20 mg namenda and 10 mg celexa. I have been slowly adding the 10mg aricept. I have seen a couple of moments of clarity but those moments have not been great moments. I have to call her doc for the new prescription but am wondering if the increased dose is going to bring more clarity, hence more anxiety..? Opinions please? Or questions/comments?
Jazzy1
Posted: Wednesday, January 4, 2012 9:04 AM
Joined: 12/16/2011
Posts: 33


We increased mom from 5 to 10 after 3 months.  I didn't notice any changes, but do know others have side affects.  Can't say any drug will really help much with clarity, but if it does enjoy the good moments.

 

 


Stephanie Z
Posted: Wednesday, January 4, 2012 12:15 PM
Joined: 12/15/2011
Posts: 4219


Hi, Please remember that these medications are not cures. The purpose of them is to reduce the EFFECTS of the disease and help a person hang on to their memory and cognition for as long as possible. The anxiety is probably another issue, but your doctor will know if it is a side effect of the medication or if she needs something else to help deal with it.

Aricept and the other drugs have helped many people have fuller lives and are certainly worth prescribing for people with AD. so don't be discouraged. See what your doctor has to say.

Also, you might try to get mom to voice her concerns. What is making her anxious? You can also observe where she is and what is going on around her when she becomes anxious. There may be something in her environment that triggers her anxiety.

Keep in touch

Stephanie


lesleeb
Posted: Wednesday, January 4, 2012 1:56 PM
Joined: 12/19/2011
Posts: 469


Thanks for the feedback. I guess I should have been more clear. I just assumed most of you know my story and that I have been caring for my mom for 2 years 24/7 in my home and have a firm understanding of all her medications,doctors and moods, etc. I know that aricept can possibly help with symptoms. but not always... especially as they advance in the disease. 

My mother has not had much problems with anxiety. Celexa has definitely kept that under control. My mom is stage 6 and is a very happy, social woman.

The moment of clarity on Christmas night was one of heartache. She asked me where my dad was? This is not new. She has asked me this many times and I tell her the truth. I told her he was in heaven. She began to cry and say that she thought it was a bad dream. It took some time before I could calm her and redirect. She went to bed happy. My concern is that if the increased aricept is going to bring about clarity about sad things then what is the purpose? It's not good for them to be  sad about something if they don't have to be. My mom already lives a very full life and is very happy. We travel, dine out, shop, go to parties and even do charity work. What else could we do to make her life more full? I guess I believe the best medication is me not shielding her away from the world and giving her a wonderful life anyone would be envious of...?


lesleeb
Posted: Wednesday, January 4, 2012 2:24 PM
Joined: 12/19/2011
Posts: 469


I left a message for her Neurologist to call me back to discuss. In the meantime I called the nurse at my mom's day program and asked her what she thought. It was interesting because she told me her sister who is also an RN and has spent her entire career working with elderly dementia patients said the exact same thing as me.
Stephanie Z
Posted: Wednesday, January 4, 2012 3:50 PM
Joined: 12/15/2011
Posts: 4219


lesleeb, I'm also a nurse with over 20 years experience in dementia care. I've developed 2 large units and was director of nurses in one facility so I oversaw that unit of 40 residents for 5 years.I've got a masters in geriatric nursing and  I've also been responsible for developing training for the Alzheimer's association in the DC area and have spoken at many conferences and seminars as well as the Alz. Assoc. educational conferences. I'm not telling you this to brag, but to let you know that I have a pretty good handle on behavioral issues.

Please, if you mom has another moment when she asks about your dad, do not tell her he is dead. The best thing to do if that occurs again, is to say "He's not here right now mom, but do you remember when you and dad took me (Whatever nice memory you have). She needed to experience his presence or love and that's why she was asking. Let her have the joy of remembering. After a few minutes, spin the conversation off to another topic. (Example: Remember the dog we had? What was his name? I saw a TV program about the same kind of dog. It was a comedy. I'm going to have some tea, would you like some?}  The idea is to give her the opportunity to reminisce. Why make her sad by telling her the truth?

I don't think the doctor could help in this situation. What will help a lot more than medications is learning to distract her and guide her thoughts in a happier direction.

 

Hope this helps.

Stephanie


cathyjm
Posted: Wednesday, January 4, 2012 4:24 PM
Joined: 12/2/2011
Posts: 160


FWIW, I found that with my partner (who progressed from MCI to stage 4, then to stage 5) -- as she aged from about 86 to 90 --  that although I never brought up sad or worrisome things, it worked best -- with her as an individual -- to give her straight answers to questions about who died, when, how, etc. And of course, to listen with empathy and reassurance to whatever feelings came up.

I'm not saying this would be best for everyone. It did work well for her. I was there to listen, accept, empathize -- and I saw her, over time, do her grieving and accept things that upset her at first. Yes, for a while she'd be upset every time. Then, less so. Then...not upset.

My partner was at a stage in her life when it's normative to revisit past issues that didn't get fully resolved earlier. This is natural. Most of us busy with earning money, caregiving, homemaking, raising kids etc. never had the time and energy to FULLY work through childhood and adulthood issues. Old age is the time to do this, so as to be able to die peacefully.

Yes, there were times when I distracted her instead, took the conversation onto a comfortable tangent -- more to conserve my energy than because it was best for her. If I had it to do over again (she died last week), I'd spend even more hours listening than I did. 

I saw my partner work through grief about losing her ability to do the work she loved (and yes, Aricept did help her get clearer about her losses) -- and grief about some childhood traumas. She'd had a lot of therapy over the years, and meditated, and all those good things -- but you know, I think few of us reach the late 80s without still some things to ponder and yes, feel sad about.

When a friendship of nearly 60 years, with near-daily letters, ended with the friend's death -- it was hard to tell her. But my partner made a clear decision that she WANTED to remember this. She invented a ritual to mark the death and celebrate her friend, and I helped her carry it out. Yes, she was sometimes sad when she wanted to tell her friend something and remembered she was dead. But -- this is part of living, it's part of dealing with life. 

If my partner had been sad ALL the time -- different story. If she was sad for an hour or two, and very happy the rest of the time ("We have a great life together") then I decided to hang in there with her. Early on, we had a deep and heartfelt conversation that showed me that she didn't need me to try to manage everything so she'd be happy and content. She needed me to be with her, in a deep and intimate and loving way. 

Most staff members in a nursing home can't listen to someone and hold them for an hour or two at a time. I had the special privilege of a flexible job and my partner at home. We all do what we can. And again, the approach I took is NOT the way that is best for everyone. Our loved ones are individual people with their own personalities and values. I tried to relate to my partner by our shared values. It might have been the worst thing in relation to someone else.

There's no one right way.
lesleeb
Posted: Wednesday, January 4, 2012 4:41 PM
Joined: 12/19/2011
Posts: 469


Stephanie Z, it was nearly midnight, I was exhausted. I accidentally told her my dad was in heaven when she was not in the right state to hear it. I have been distracting her and guiding her to very happy places for a long time. My feelings are to try the increased dosage for a period of time and see how it goes. I am all for slowing the progression but I wonder how much it can be slowed in Stage 6...I'll chat with her doc and see what he says.

Thanks for your help.


Stephanie Z
Posted: Wednesday, January 4, 2012 11:29 PM
Joined: 12/15/2011
Posts: 4219


Hi Leslee,  This is what I was commenting on: "The moment of clarity on Christmas night was one of heartache. She asked me where my dad was? This is not new. She has asked me this many times and I tell her the truth. I told her he was in heaven."  I know you love your mom a lot and I just wanted you to know there was a better way to handle this.

 Cathyjm stated that she always told her partner the truth. Maybe that was the right decision for them, but it's been my experience that at times the truth hurts too much and the person with dementia forgets and then has to hear it all over again and again. Better to reminisce about the good times and then move on.

 Hugs for being there for mom. She is lucky to have a loving daughter take care of her.

 Stephanie


lesleeb
Posted: Thursday, January 5, 2012 10:46 AM
Joined: 12/19/2011
Posts: 469


Cathy, I'm sorry I didn't see your post when I posted last. Thank you for your insight. Your relationship with your dear partner has been an inspiration to me over the last 2 years. I agree 110% that each person is different and just because most folks with dementia fall into the category that only good news is the way, doesn't mean that my mom or your LO does too... My mom appreciates the truth, just so long as I say it in a loving and caring way. I would never be mean or hurtful. Some things are too hurtful to say. I have chosen to fib to my mom about my brothers untimely and brutal death. Though I am taking a big risk here when the trial occurs and it is all over the TV... Anyway, I know I love, adore and cherish my mom and I only have the best intentions for her. Someone who cares for their LO is different than someone who is doing it for their career. I'm sorry if that's harsh but a professional can't know how it feels to care for their ADLO unless they have done it themselves.

 


rose_ro
Posted: Friday, January 6, 2012 1:21 AM
Joined: 12/21/2011
Posts: 2431


1) the aricept higher dose helped my mom more, but bothered her stomach more

 

5 mg had not, at all,

 

but, when we went back to the 5 mg, she couldn't tolerate it either

 

we did the same thing with exelon

 

both meds helped her - she's now taking huperzine A, per info on this site, and it helps without the side effects (you would not take it at the same time as either of the above two, as I understand it)

 

it took time, but with each med, time helped her get ''better'' with the meds...

 

when you say ''slowly add,'' what does that mean?  how often dosed?


rose_ro
Posted: Friday, January 6, 2012 1:31 AM
Joined: 12/21/2011
Posts: 2431


 

 

ok, i understood more of what you're saying as I read on...

 

I believe in making sure one is as ''with it'' as he or she can be...is your mom the one with the terrible story about your brother? 

 

My guess is she was looking back at memories of family Christmases...

 

I would have told my mom ''the truth'' also...and if it made her cry, then I would not do it again,as you say...

 

i was ''afraid'' of the memory meds in the beginning, for basically these reasons...I was afraid they'd stir up the memories of things that perhaps were best forgotten, or might make her sad...

 

but I think there's a sense, if they are getting more cognitively ''with it,'' of also being able to process info...perhaps she never really mourned some loss, and it's coming out now...or she's tired...

 

i went to Mass last Sunday, to a church I used to go to, but don't as often now...the music was very moving...I was crying within a few moments of the Mass ending...so emotional, because of all we've gone through... a priest came over to me, as I was with some friends who know some things I've gone through, and said a prayer...

 

I felt lousy for a while after - I ''should'' feel better on New Year's!

 

But I began to feel better because I was ''processing'' it...

 

here would be my ''rules''

 

1) give any med that can help without hurting

2) tell the ''truth'' when important, but also look to see if the real mood is a desire to connect, to be reassured...

 

I''m pretty sure you're already doing this   but I would always try the higher dose in a med, and give it some time...

 

My mother never talked much about her parents for some years,  but mentions them now in such a loving way...she has gotten sad some times, but never overly so...

 

sometimes, my mom seems to want to fill in gaps of her memory, and in those cases, i ''have'' to tell her the truth...she spent some time one day asking my dad how his mom passed away...she wanted real info...

 

I just got to see cathyjm's answer, and it's a lot along the lines of what I'm saying   if a memory med brings up an issue, the increased cognitive ability can also help a LO to work through it

 

When a doctor last year told me to give my mom SEVERAL months to get adjusted to the exelon patch, to give her time to ''get better'' I kind of didn't believe her...but she was right...

 

I think StephanieZ has some great ideas and info...but I think your question really is, should you continue the increased dose?  my vote would be for ''yes,'' unless you see something really wrong...

 

with my mom, I ''had'' to tell her about her grandson...I feel some people told her too many details (which I stopped, and she also has forgotten)...how could I ''hide'' something like that, and what would be the point?  But she handled it so much better than i could imagine, and I think the meds helped...ONE day, I found her crying here, when she found his prayer card...I just comforted her, assured her of all the things she had told me!  and then started talking about something else...

 

 


lemonade
Posted: Friday, January 6, 2012 5:02 AM
Joined: 12/24/2011
Posts: 223


Does anyone know the benefits of the Aircept 23 mg daily?  Thanks
lesleeb
Posted: Friday, January 6, 2012 6:54 AM
Joined: 12/19/2011
Posts: 469


Thanks Rose_Ro. Yes, I spoke with my mom's neurologist and together we decided to give 10mg a try. I increased her dosage slowly, meaning I would give her 5 mg one night and then 10mg the next and continued with this dosage for 2 weeks. I did not see any gastrointestinal issues. Which, is one of my concerns since my mom has had tummy issues in the past. My mom's sister (also has AD) couldn't tolerate 10mg but is fine on 5mg. We discussed the moments of clarity and he felt that had nothing to do with the increased aricept dose. Just a moment of clarity... too bad it was a sad moment. Anyway, I began giving her 10 mg and I'll see how that goes. Living and learning everyday with this disease... And yes, it is my brother who was murdered. She currently does not recall any of it...
jillann
Posted: Friday, January 6, 2012 8:17 AM
Joined: 12/20/2011
Posts: 78


Hi Leslee,

 

I have recently had the same questions that you have.  My mom has been on the Excelon patch for a little over a year now.  We had noticed such a wonderful improvement when she first started but she had drifted over the year or so to where it was quite difficult to have a phone conversation with her.  I live long distance from her.  She would not be able to keep a train of thought or get the words she wanted. 

I spoke with her doctor and he suggested that we could increase the dose of Excelon.  We did that and have once again seen wonderful improvement in her cognition.  It is much easier to talk with her on the phone now.  The down side is that she is now more aware of her deficits.  She is in stage 6 and has started to become urinary incontinent.  Before the increase in medication she just laughed about her issues and didn't remember or dwell on them.  Now I notice she is embarassed about the incontinence.  I know the incontinence is because the AD is affecting her minds ability to sense when she has to go.  I feel conflicted that I want her on the stronger dose so I can talk with her and enjoy her but I do feel it brings more selfawareness of her deficits and that is sad.

Sorry I don't have any help for you.  Just know that there are others struggling with the same issues.

 

Jillann


rose_ro
Posted: Friday, January 6, 2012 12:41 PM
Joined: 12/21/2011
Posts: 2431


I was so upset when my mom couldn't take the 10 mg for long, and then couldn't go back to the 5 mg...that should give you an idea of how I liked how the meds helped her...

 

The Huperzine A has been just as good, I think. 

 

But before the aricept 5 , my mom couldn't put her own shoes on.   When she was at 10 mg, she put her clothes on better, more easily...spoke better with others...so you can see why ''losing'' that upset me..

 

I did not feel she had more memories coming up than before, which would bother her.

 

In the situation you were in, it's really natural for those feelings and thoughts to show up.

 

I went to Mass on New Year's, and could never have imagined I'd by crying within the hour!  But the place, the music, the feelings came out...

 

let us know how things work out, I think they will!


jfkoc
Posted: Friday, January 6, 2012 3:53 PM
Joined: 12/4/2011
Posts: 17438


So often I feel that how I handle something is a "crap shoot". Every situation is a bit different here.

 

The best I can do is to test the water about a given subject....what kind of response is generated determines the converstion. Sometimes the truth is fine...other times good ol' validation and diversion work best.

 

Don't you wish we could bottle and sell the energy we expend working it all out!!!


JAB
Posted: Friday, January 6, 2012 5:45 PM
Joined: 11/30/2011
Posts: 740


lemonade wrote:
Does anyone know the benefits of the Aircept 23 mg daily?  Thanks
Lemonade, I started a thread on this subject for you.  Many factors can affect how your loved one responds to Aricept, including genetic makeup, age, weight, and gender.  Some of these you know ... some you don't.  A small, elderly woman should receive a much lower dose of Aricept than a heavy-set younger man (such as ... Ttom.)  Some loved ones may do a bit better on Aricept 23mg, some may suffer serious side effects.  If you decide to increase your loved one's dose, be sure to monitor her very closely.
http://www.alzconnected.org/discussion.aspx?g=posts&t=2147484733
JAB
Posted: Friday, January 6, 2012 5:58 PM
Joined: 11/30/2011
Posts: 740


jillann wrote:

I spoke with her doctor and he suggested that we could increase the dose of Excelon.  We did that and have once again seen wonderful improvement in her cognition.  It is much easier to talk with her on the phone now.  The down side is that she is now more aware of her deficits. 

Jillann, while it is entirely possible that the increased dose of Exelon helped improve her cognitive function, I'm not so sure you can blame her awareness of her deficits on that.

 

As the disease progresses and capabilities decline, our loved ones may become more aware that they're having problems, quite possibly simply because the problems are becoming that much more obvious.

 

My husband was blissfully unaware he was sick for the first five years or so after the diagnosis.  For the first four years, he was on a stable dose of AD meds.  When he began to slip a bit, I added more of his cholinesterase inhibitor (in consultation with his neuro.)  He responded well.  After a year on this new dosage, he started having brief periods when he realized there was something dreadfully wrong.  And as time goes by, he's been having more of these episodes, sometimes lasting longer, too ... and that's without additional changes in his meds.

 

Some of our members who have dementia talk about days when they feel "foggy".  I get the impression my husband has almost a physical sensation in his head on his foggier days.  He frequently rubs his forehead, and he's talked about fog or feeling stuffed with cotton.



rose_ro
Posted: Friday, January 6, 2012 10:51 PM
Joined: 12/21/2011
Posts: 2431


The weight issue is a good point.  I think either Aricept or Exelon has a recommended weight cut off.  My mom was just about that point, so I think the side effects were stronger for her.

 

Oh, and also - she lost weight on the Aricept 10 mg.  It affected her appetite, and she lost weight.  So then the weight cut off was even more of an issue.


Iris L.
Posted: Saturday, January 7, 2012 1:59 AM
Joined: 12/15/2011
Posts: 16143


JAB wrote:

Some of our members who have dementia talk about days when they feel "foggy".  I get the impression my husband has almost a physical sensation in his head on his foggier days.  He frequently rubs his forehead, and he's talked about fog or feeling stuffed with cotton.


 
 
 
 
I had complained of "brain fog" before beginning Exelon patch.  I became more functional with the Exelon, but the brain fog presisted.  The brain fog did not dissipate until after i began treatment for sleep apnea.  So in my case, the brain fog was separate from the cognitive deficits. 
 
Iris L. 


JAB
Posted: Saturday, January 7, 2012 4:54 PM
Joined: 11/30/2011
Posts: 740


That's a good point, Iris.  Many dementia patients develop a sleep disorder of some sort.  Those could very well cause the foggy feeling.

 

I don't remember -- did getting treated for the sleep apnea help with your cognitive problems?