Dr recommends taking Grandma off Namenda and Aricept

CateM

Hi all.  I am an infrequent poster here. Mom and I along with some hired caregivers help take care of my grandma who is now in the advanced stage of Vascular Dementia. She is in an independent living apartment she shares with my uncle( 2 bedroom). And we have pretty much dedicated caregiving support for her. She’s 95 and has been incontinent for about 6 months now. She’s non verbal, resists showers, and has had combative episodes. She’s been on depokote for that which we seemed to have some success with originally but it’s effectiveness has waned.

After a bad episode over the weekend with gram, we sat down and talked about changes over the past couple of months. We had conversations with her doctor yesterday who has been wonderful for our grandma. He’s made a couple of suggestions. One is getting her palliative care to help monitor her condition in real time and to make recommendations regarding her care. This would include additional tactics to help with her behavior and medication adjustments. It would also bring care to her including getting blood draws and urine cultures which have been difficult considering the difficulty we have had getting her out to the doctor now without it stressing her and throwing her daily routine off for a few days. She would also have regular doctor visits as needed.

The second and most concerning to mom and I is removing some of her current meds, not concerned so much about her cholesterol medication but we were surprised he suggested that we stop giving her Namenda and Aricept. The rational is these meds are no longer helping her. 

I think that last item really shook both mom and I. Logically we know that her condition is degenerative but emotionally it feels by removing these meds we are surrendering. We got off our consultation with him a little shook at that last suggestion and then both cried.

My question is are we over-reacting? And are those two medications still helping her in ways we don’t even realize? Her doc seems to think they are not.  Thanks. Any input is appreciated.

Beachfan

Listen to your grandma's doctor. As hard as it is to accept, Aricept and Namenda lose their effectiveness after time.  My DH, stage 6 Alz, was taken off Aricept several years ago as his PCP had researched the drug and found that it could contribute to mobility issues, particularly falling.  In June, PCP agreed with me that Namenda was probably no longer effective and I could stop that as well.  (DH was diagnosed 11 years ago.) Since I had a new prescription for Namenda and I am inclined not to be wasteful, I am finishing the prescription and then not renewing.  His only other mediation is 50 mg. Zoloft daily and probably could stop that since he is calm and compliant (it was originally prescribed for agitation).  I told PCP that I wanted to keep the Zoloft on hand, maybe for me.  LOL.  Good luck with your grandma.  Sounds like she is in caring and loving hands and sometimes that is what matters most.

Stuck in the middle

You said your grandmother's doctor has done a good job for her so far.  I think I would follow his advice if it was my grandmother.  My mother had VD and did not live long after she got to the stage you describe, at about the same age.  It is probably time to make her as comfortable as you can and prepare yourselves to let her go.

Iris L.

At a certain point comfort care is given.  Meaning all med's are discontinued except for those needed for comfort.  Why does she need blood drawn?  

Iris L.

Quilting brings calm

Most of the drugs that try to slow down the progression are meant to be taken on the early stage with some  also meant for moderate. Not all of them even work for vascular dementia in those stages. It sounds like your LO is further along than that.

terei

I never saw any change in my mom when we dropped those meds.   I will echo Iris:  blood draws?  As a matter of fact, I never saw any change in my mom’s condition when ALL her meds were stopped when she began to resist taking them.   If you are doing anything with her that is causing any upset or agitation, IMO it should be stopped.

If you and your LO are not being helped by hospice, I would contact them for an assessment. I am puzzled by your ‘surrendering’ comment.  Your G Ma is 95.  She is at the end of her life.  I would be discussing what best to do to make her last days as comfortable + serene as possible + question ANY treatment she is receiving that is not aimed at alleviating pain.

If you have not read ‘Being Mortal’, I would recommend it.  It may help you come to terms with accepting that death need not be tragic + should not(IMO) be filled with medical interventions that only serve the survivors + not the patient.

glitterqueenscare

CateM - At my Moms last neurological appointment it was suggested to stop namenda, we had already stopped aricept.  Partly because pills were becoming a challenge (although we are grinding them up now) but mostly because the advancement is thought to be at a point where they were no longer and will no longer be effective.  I was stunned at first, as you say it felt like surrendering or giving up on helping her in the battle. It was hard, I had to think about it for a couple of months. It helped when I thought about her when she was vital and healthy.  What would she want us to do at this point?  It became very clear then, she would want it to be over as fast as possible.  What was I trying to prolong?  So yes, I finally made peace with ending the last alz med she was on.  She has continued to progress but she was progressing at a steady clip with the meds so doubtful it had much impact either way.  My Mom is 76, stage 6c.  The neurologist also said there wasn't much more she could do for Mom, Mom was already with a palliative doc and that doc also was recommending the end of the namenda.  It is hard though, I was also struggling with it.  I am sorry we are faced with making these tough decisions.  It feels like with Mom something changes every few months or so with one more decision like this I have to make or come to terms with.  God bless your family during this time.

Salsam

Strangely, I read this site more now that my dad just passed on June 6 at age 93.  I had control of the meds until I put both my parents in MC on Jan 29.  They both went to the doctor easily, we had hospice care in the home, and Hospice allows other meds if prescribed by a doctor.

I was distrustful of Hospice medical advice at first,  and so were my caregivers in my home.  Then when they got to the MC center  they needed Lorazepam, and the MC facility by accident discontinued the Donepezil(Aricept) for my mom and I was very distressed because her memory seemed to get so much worse.  We started it back, and the Nurse told me, "Oh it doesn't do much good anyway at this stage."

and I blamed myself for their decline...but the end is not easy, regardless of the disease.  

My mom forgot how to walk after my dad died...and I wonder if it was because he died.  No doctor can answer that.  

Yesterday she asked me where was my dad, and I told her he had died, and she said, "Oh , that 's right, I remember now."  
Some say people with Dimentia don't remember that their loved ones have passed, but my mom sure did.  Many say don't remind them, because they will get sad, but my mom asked me straight out...so I told her the truth.  Another time she got angry because she asked the caregiver why did no one mention her husband? 

I have her in a different place now, and this is the place my dad died.  I asked her today if she was happy there and she said, "Oh yes."  
Another day she might tell me she is not happy there.  

To sum up, we are so attached to our loved ones, no matter their age.  Sunday, I attended a memorial service for a person who would have been 33 on the day of the service, and it helped me give thanks for the length of time I have had with my parents, even if the Dimentia and Alzheimer's is a big challenge.  

  

CateM

Thanks to all the posts.  I appreciate the input. I think mom and I knew the answer here it's just not easy but I am not telling any of you here anything you don't know.  

We of course are going to follow our docs advice.  I don't think there was any doubt. But I am glad I posted here and read some of the feedback. That you all.  

Someone asked about a blood draw.  Part of the reason is to assess the depokote but the doc has said if she won't tolerate it we won't do it.  She does need a urine culture but that is a lot easier to do. We can do it and give it to the nurse when she comes for the blood draw. 

Thanks again and god bless to all of you.