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Mom and sister
Goosemother
Posted: Wednesday, March 8, 2017 2:30 PM
Joined: 3/7/2017
Posts: 49


 Thank you for this post, I am new here and I am not the patient, I am dealing with two pt, one my mother age 87, diagnosed with mixed dementia. She has had minimal testing, I am sure due to her age. The other my sister 65, diagnosed with Alzheimer's, but she disen't want anyone to know.

It had not occurred to me that there could be other cause i.e. Diseases, my concern is my mother was put on Trazadone which she didn't take right, I speak to her everyday, I noticed changes in her as soon as she started using this drug. Fast forward about two years she fell last spring and by mistake did not take the Trazadone for a few days, by day one I had people calling to say that when they went to visit her they expected her to be upset and more confused than normal, they said the opposite was true, they said she was the clearest headed they had seen her in a couple of year, (length of time she has been on Trazadone for sleep), they all said that she was her old self that they just could not leave when the time came for them to go.

I went to care for her while she mended, I realized that her really good days correlated to no Trazadone the night before. I stopped giving her the Trazadone at bedtime, right away I noticed her old self and memory was coming back, (thought I would never see that person again) the first couple of nights I could just sayi had given her the sleeping pill and she accepted that, by the third night she knew she had not taken it. I took her to her doctor explained what I and others had observed, I asked for her to be taken off that Med, and a notation to be put on her file not to give it again. Everything was fine for a month or do she was on a low dies of a narcotic at bedtime, so she slept. When she no longer needed this she went to her doc and asked for a sleep aid, the doctor gave her a script for the Trazadone, I knew with in a couple of weeks, because she was slipping away before my eyes. I made a call to her doc, she said she would change the Med fir sleep. My sister went eith her for this app, this was hood she went but her medical knowledge is limited, they told her the new Med was some other sort of med that had sleep as a dude effect. After a few weeks I called doc again, she was annoyed but did admit it was basically same medication. I again asked for her to be taken off of it. Anyways we yo you'd back and forth over this for months. One day mom called in tears, really suffering from anxiety,  They had just put her back on the Trazadone, she was telling me how she really didn't like how it made her feel. Back to her doc, who put her on an antidepressant to deal with the aniexty, which made her worse yet.

I understand theses all can be symptoms, but why can't we try no meds instead of adding more mind altering meds.

The good that came out of this is they sent her to a team that assess all her abilities and needs, then makes recommendations to her doc as to what to prescribe. 

To me it us a no brainier, she tested the worst when on Trazadone, and better off of it, worse when back on it.

So I have been pondering the value of testing someone old.

My sister's care and testing has been under control of her husband, so I have no idea what tests have or have not been done.

 I came to read theses posts in hopes of maybe getting a bit of an insight as to what she is feeling and going through.

My mom and sister were both given diagnoses about a month ago.

I am trying to learn all I can about this disease, effects, progression, how I can best help them at different stages.

I will probably not end up being the main caregiver of either of them, but I will be the one that determines what is best for my mom. I would willingly help care for both of them, but I have my own on going health issues that will prevent me from doing much hands on stuff.

I appreciate any words of wisdom anyone can offer.

Thank you


The_Sun_Still_Rises
Posted: Wednesday, March 8, 2017 2:42 PM
Joined: 7/24/2015
Posts: 3030


Hi and welcome the forum.  I am so sorry about your mom and sister. 

What you describe Trazadone, I am not surprised as the psychotropic meds are not recommended for use in dementia, indeed the FDA has warned against them.  They are known for making dementia worse, and having other serious side effects. 

You have understand that doctors only know how do one thing - match symptoms with meds.  They don't heal or cure....just dispense meds.  And, they often get large kick backs from pharma for rx'ing the psychotropic meds....which may have been why the doctor went straight for that rather than lesser sleep meds. 

You might consider Melatonin for a sleep aid.  It a hormone we make naturally so it not a drug.  As well, studies have been done that show people with Alz do not make as much melatonin, hence probably why we don't sleep as much. 

I found that the Everything Alzheimer's Book was a good primer in the disease and what it do.  You will feel fairly educated after reading and looking at.  Another really great book is, Dancing With Dementia by Christine Bryden (and you might consider gifting copies both your mom and sister). She write about what it like experience dementia soooo eloquently. 

You are likely going feel fairly powerless if you are not the main caregiver, but supporting each family will go a long way help out.  

This forum can be hard navigate at first...but I wanted let you know that there is also a Caregiver Section where there are more people...and where your post might get more attention.  If you click on the "discussions" tab at the top of the page, you will see it. 

Again, welcome the forum.

<3


Mimi S.
Posted: Wednesday, March 8, 2017 7:02 PM
Joined: 11/29/2011
Posts: 6061


Welcome to our world goosemother.

I think the stage the disease presents itself is more important than age. In order to take the neuro-psych the patient has to be able to understand directions. 

Doraiswamy and Gwyther, The Alzheimer's Action Project describers a good diagnosostic workup.

Why the Trazadone was repeatedly given seems like a doctor who neither remembers nor reads notes. And your mom doesn't remember. iI you go to the same pharmacist could they be asked to call you if it's ordered.

alz.org has scads of links. Do check out what your library as.


Goosemother
Posted: Wednesday, March 8, 2017 9:12 PM
Joined: 3/7/2017
Posts: 49


MimiS.

Thank you for yor response, to put it mildly my mom's doctor and I don't see eye to eye.

Her doctor doesn't remember things, doesn't look at notes, doesn't listen. Mom and her husband went in told the doctor she wanted to sign any papers she had to authorize her doctor to tell me anything and that I could directives on her behalf.

Last time I called her to once a again to address Trazadone and sleep issues, she said well I hear what you say but I will not change her orders or meds until she comes in to see ma and says that is what she wants.

Hello she doesn't remember seeing her the day before. 

That is the problem the Med contribute to her memory loss she can't remember. She cry's to me at night that she can't sleep, but by the next day that is gone, so she thinks I am the crazy one when I try to tell her she has to go back to her doctor again, and tell the doctor the med is making her forgetful. What person with dementia has that capability.

I tried the pharmacy avenue first, they assured me they would make a note on her file.

She had a psych evaluation today, it went well, we mostly discussed the meds she is on and may change too. She did agree with me that she should be weened off the Trazadone.

It may make no difference but we can hope. If her memory improves as it has before when going off the Trazadone, it will mean we will hold off on adding airsep.

For my mom I don't think I will be agreeing to any more testing other than the questions they ask her. I don't think what type of dementia really matters. We will take it day by day.

Thank you 

 


Mimi S.
Posted: Thursday, March 9, 2017 8:21 AM
Joined: 11/29/2011
Posts: 6061


Hi again, goosemother,

Will the pharmacist tell you the usual way to wean?  Or go on-line. Or just start cutting down on dosage yourself every several days. I am not a doctor nor have any kind of medical training.

 

There are some types of dementia where Aricept and similar drugs are counter indicated.  Sometimes this possibility will show up in a brain scan.  Did your mom have any done as part of the diagnostic workup?

 

Good luck.
Goosemother
Posted: Thursday, March 9, 2017 8:47 AM
Joined: 3/7/2017
Posts: 49


Hi 

Sorry in my discussion with the psych yesterday. She agreed with me about the Trazadone, so plan was for mom to cut does from 50mg, to 25mg for three weeks, reassess at 3 weeks, then take her off the Trazondone.

At this point then we decided about the use of Airsep.

Thank you


jfkoc
Posted: Thursday, March 9, 2017 7:34 PM
Joined: 12/4/2011
Posts: 13735


If you are going to change both meds  do so one at a time other wise you are left not knowing which caused which problems.
jfkoc
Posted: Friday, March 24, 2017 4:09 PM
Joined: 12/4/2011
Posts: 13735


hope things are going more smoothly
Goosemother
Posted: Friday, March 31, 2017 3:29 PM
Joined: 3/7/2017
Posts: 49


Thank you, things seem to be going along ok, no major changes with lowering her dose, maybe a bit more clear headed, so there is hope once she is off the Trazodone, she may improve more.

The plan is to slowly ween her off the Trazodone then decided whether to start Aircept.

If she improves as much as the last time I got her off the Trazadone she will not need the Aircept yet.

This time her SORT team is handling the weaning off, if they deem she is better without it the doctor will not be able to RX it for her again. That is what happened the last couple of times I got her off it, I would tell her doctor I didn't want her on it, the doctor would wait a month or two and re RX it.

I called her to discuss this the doc, she said I won't change it unless your mom tells me too, hello mom wanted me to take over her medical decision b/c she knew she was no long able to make the choices. I was so pissed.

This at least what prompted to doctor bring in this sort team, thus ment mom had testing, meds gone over, etc. she also has a nurse assigned to her care so I don't have to deal with her doctor this sort team is taking over. They will not do anything with out my concent first.

 


 
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