Namenda question and Good Days/Bad Days

glitterqueenscare

My Mom had a neurological appointment this week and during that visit based on her progression the doc advised she was well into stage 6.  I had been thinking she was stage 5 or early stage 6.  She still walks fine, speaks, can follow conversations, feeds herself mostly appropriately and has times where she is oriented fully to what is going on and where she is, smiles and laughs and knows who most people in our family are on sight most of the time.  She also has times where she has no idea where she is even though she is in her own living room, thinks her parents are coming to pick her up and forgets who some of the grandkids are, has no sense of time, doesn't remember bathroom steps and can't shower herself, dress herself, make herself a meal or give herself meds, she can be emotionally weepy or angry at something that is illogical but logic has no role anymore.  She is a wandering risk as she will get up in the middle of the night and think she is in the wrong house and attempt to leave, we have made our home a lock down unit.  She has little interest in anything around her anymore and is hard to keep occupied or directed.  She makes a weird humming noise almost constantly sometimes that would make a saint snap.  BUT - then she will have an  evening like tonight when she seemed pretty normal, paid attention to her surroundings, NO HUMMING and seemed like her old self in some ways.

I knew she had progressed but the doctor looked back at her progression and advised us that we should be aware her progression is fast.  That just kicked me in the gut. I know what stage is coming, my Dad died in 2015 of the same disease.  I have even been considering placing my Mom on a waiting list for care because I am worried about where we are at on the progression line and time is of the essence, I know change can come fast and be hard to manage. I work full time and so does my husband, we have some in home care to help out and she goes to a day program two days a week that she can attend as long as she isn't fully incontinent.  I know we are nearing a time that this situation will become unsustainable. I guess what is confusing to me is that she still has some pretty good days, she still has some quality of life left in some ways.  When my Dad got bad he just got bad, he didn't really snap in and out of it, he progressed and that was that, his days were pretty consistent.  Sometimes people don't even realize she has the disease, its really trippy. I think the good thing would be if I could get her into MC she would still maybe benefit from some of the activities and socialization but maybe I am just kidding myself considering where she is at in her progression.  

The doctor also suggested we take her off Namenda as she thought it was probably past a point of helping.

So, I have been reading a lot about taking a LO of Namenda and wonder what any of you have experienced in taking a LO off the medication at this point.  There is little consistent data on continuing the medication vs. ending it.  I am leaning toward continuing it for now, at least as long as she is holding incontinence at bay for the most part, I would hate to remove it and throw her into full incontinence.  Some people report progression after the removal of the drug but it appears the only way you know is by removing the drug. I am working with a palliative doctor and discussed it with her, she agreed with my approach but I worry I am just prolonging my Mom's suffering for my own sake.  Any one with experience with removing Namenda?

I also am curious if any of you have a LO in later stages such as stage 6 who still has good days?  Days good enough that make you question where the disease progression is really at and that make decisions harder to future planning harder to determine.  

Thank you in advance for any advice, sorry this is so long!

Salsam

I don't have answers...just the same situation.  I just moved both my parents (divorced) to MC 3 months ago.  They never took Namenda but both were on Donepizil, and they got mixed up with meds and my mom got off of it for a month...I was so distresssed because she seemed to really slide down FAST...I got her back on it...but 2 doctors told me it probably didn't make much difference.  I was blaming myself for the slide down...but really she was confused at home, too, just seems more familiar because more familiar surroundings. 

It is just so difficult to see them like this when I had 5 good years of them being fairly with it.. and I enjoyed having them here.  I had very good care in the home.  .The decline is so gradual.  And when you love them you see them with eyes of love not eyes of looking at their Dimentia as they do in a MC facility where they see them as all confused people.  

GothicGremlin

I wish I had some good answers, but I don't. I think you and I are in a similar situation though, glitterqueenscare.

As far as I can tell, my sister is in earlier stage 6, and like your mom, she's still on Namenda. She swears it's doing her some good, but quite honestly, I don't think it is. I've also heard stories about taking a LO off it, and am worried about a sharp slide if we take her off - although over the last couple of weeks I can almost see the decline day by day. 

I've got email out to her doctor about the Namenda, and her stress/anxiety (she probably needs to start taking something for her anxiety).  She's in an obsessive phase right now, and is convinced that every time she can't see her cat (which is often, since the cat is black), it means that the cat has died.  Her cat is is actually quite healthy, I'm happy to say.

About good days and bad days -- my sister has both, but the brain fog is becoming much more common. I would say right now it's probably a 50-50 split. She's said to me "sometimes I don't know what to do, or how to do it." I can tell when that happens because she just stands there looking kind of vague. It's painful to watch.  She also has primary progressive aphasia, which compounds the confusion. There are times when I have absolutely no idea what she is trying to tell me because all the nouns are gone. Everything is about things and stuff, and "over there", or 'here". "Over there" and "here" can be states of mind, it seems. But we deal.

I'll post more when I know more from her doctor.

MN Chickadee

My mother didn't tolerate Namenda well (side effects) but takes Aricept which is a similar drug. I don't thing it is going to make her life or disease longer or shorter. It is either doing 1) Nothing anymore or 2) Helping a bit with her memory for things like eating, walking, speech etc. In the earlier stages it might be helping someone remember who their spouse is, or grasp what space and time they are in, later it might be remembering to put one foot in front of the other or how to stand up. If it is still helping it is just allowing some brain synapses to get through when they otherwise would not. There are differing thoughts on this in late stages of dementia as you said. I am of the opinion that if things are going ok, you can afford the drug, there aren't side effects I would leave the apple cart alone. If you stop it and she declines she may bounce back after restarting or she may lose ground. I have preferred to leave it alone, and my mother takes Aricept still in very late stage 6. We will probably continue it until she is near death, as in not eating much and bed bound. Right now she is somewhat mobile and has some quality of life left, is not likely going to pass away in the coming days or weeks so if the medication helps  I don't want to stop it. I suppose in theory if we stopped it she might suddenly not have the muscle memory to chew or walk and it would hasten death, but I personally don't really want to find out. YMMV. 

She does indeed have good days and bad. Sometimes I can understand her, sometimes it is gibberish. Some days she needs help walking. All kinds of things. 

Good plan to get on lists at care facilities. It is so important to have a Plan B. 

Are there other day programs in your area you could switch to when she is incontinent? The ones in my area do accept clients in Depends and will help with toileting. My mother even had bathing there when she refused at home. 

Jamaicabound

My husband was on Namzaric, which is a combination of Donepezel and Memantime (Namenda) for several years when he was diagnosed in 2015.  It seemed to slow progression for a while then in 2019 he started really going downhill. At the suggestion of his doctor we stopped it because he felt the side effects were riskier at his age (70) and after so long it does not give the same benefits.  It has never really been proven at all that there are benefits but we all want to grab at straws. Anyway, last year he started getting more irritable and aggressive and the doctor suggested Namenda, the component of Namzaric that helps with the emotional piece of Alzheimer's, not the progression.. He is much less agitated and complacent since being on this med. Again, it is all a guessing game and you can never truly be sure if it is progression or medication.

Anyway, in answer to your question, Namenda has helped my husband but it was just recently introduced again.  If your Mom has been on this for a while it may not be having the same effects and you need to look at the risk of side effects after long term use.

Sending warm thoughts as you go forward.

Michael Ellenbogen

Do not make the mistake to take her off of it.

Salsam

Also of the opinion don't change any meds.  If it ain't broke don't fix it.  My mom's meds were changed a couple of times...she ended up having a mild stroke...then an almost heart attack when a doctor wanted to look at her veins...and then the MC facility accidentally did not give her the Aricept for a month(Donepizil). By contrast, my dad has never had meds changed, except to try different anxiety meds that nothing seems to work, and he has had no big medical problem....just Alzheimer's problems...

Find a doctor you trust and have them explain what they are trying and why.  Glad we can share here.  

Battlebuddy

   Your description sounds very much like my husband. He has the same combination of symptoms- he is very bad at the Activities of Daily Living, but his memory is pretty good. How can you remember just about everyone, remember new events, but not remember the steps to go to the bathroom? How to shower? Makes no sense. 

   And although I don’t want him to progress, it’s annoying to be honest when I tell family that  he is pretty far down the Alzheimers road ( Stage 6)and then he shows up  and seems good. It’s such a crazy disease. I don’t  bring him around on his really bad days. Maybe I should but want to leave him some dignity?

  

Iris L.

Battlebuddy wrote:

   

Makes no sense. 

So true.  I wish it could get out that Alzheimer's Disease and the other dementais are not logical, rational, sensible diseases.   Whatever signs and sypmtoms a PWD might have depend upon the specific areas of the brain affected, also neurotransmitters, which can vary according to the biochemical milieu.  

"When you see one person with Alzheimer's, you've seen one person with Alzheimer's" is a motto of the Alzheimer's Association.  It has to be promoted that the dementias are not like other diseases.  Everything is different.  

Iris L.

  

Teresag56

Your mom sounds just like mine. I got her out if assisted living in January after not seeing her for 10 months...bought a house and brought her to live with me. Well big mistake. .this is not the mom of 10 months ago. She was on aricept and namenda from when she got her diagnosis of Alzheimer's 3 yrs ago. Well I took her off of Aricept..in the evenings she would have the worse sundowner spells...she would say I am sick start pulling at her hair and wringing her hands...took her off aricept and she has no more of this and I do not see any change in memory it is the same no short term at all. Then I read about namenda and it is supposed to be used in late stage so I took her off that too. No difference here either....didn't phase her one bit see no change for the worse or better. All people are different but in my opinion these doctors are just guessing and handing out meds and not really knowing what to do with Alzheimer's.  So just do what works for your mom. I give my mom CBD coffee a couple mornings a week and B vitamins and vitamin e and fish oil.I will try to keep her home with me as long as I can but this disease is awful and so hard to watch someone go thru this. My prayer is that one day before my mom looses all memory and function, that she just goes to sleep and peacefully passes away. I don't want her to suffer and be bedridden. Blessings on your journey with your mom

Teresag56

Michael, 

I took my mom off all meds. Didn't ask any Drs. I just saw how she was acting so I took her off meds. They are supposed to be for memory well they didn't help my mom. No change in her memory at all. The aricept was harming her and the namenda was doing nothing

search4innerpeace

Medications are so hard because everyone responds differently.  My mom started Nemenda Sept 2020 and it's hard to gauge if it has been helpful or not.  A few years ago, we tried a different med (can't remember which one) and due to the side effects she experenced, we discontinued it.  These medications do not slow the progress of the disease or help with memory, but instead address and lessen symptoms from what I understand.  Sorry I do not have any answers either.