Did anyone else waste precious time in a study before knowing there was medication your loved one sh

aalfano

Hello.  My name is Amy.  We thought my mother might have had a stroke.  She couldn't get her words out and when she did they were wrong much of the time.  The Neurologist diagnosed her with MCI.  BUT referred her to an Alzheimers study.  Has anyone else experienced this?  Once with the study they said mom had moderate to severe Alzheimers.  We were shocked, but thought the study and their testing and appointments would be good for her and that they would be monitoring her closely.  But that didn't happen.  I think it's been about 9 months since her first appointment with that Neurologist.  At that time my mother was still living alone, driving, babysitting, cooking.  Now she can't tell a microwave from a toaster and doesn't know how to use her debit card or cell phone anymore.  We had to take her car away, against her will, and she thinks she is just visiting me in another state to find better doctors.  I am at a loss here.  She knows she has her own apartment.  Refuses to believe she can't live alone and gets very angry when we talk to her about how things have to change.

loveskitties

Hi,

In your topic you mention "before knowing there was medication your loved one should be taking".

Is there a specific medication you are referencing?

Are you feeling that there is a medication which could have slowed her decline?

There is no forecasting of how quickly one will decline in abilities...it varies greatly from one person to another.

aalfano

Hi.  I do feel that there is something we could have been told about.  When I brought up the subject of Aricept to the doctor running the study (months into the study) he said it would only help her for about 6 months.  Even if that is true, we would have loved to know about that before.

Michael Ellenbogen

Is not to late to start taking them and see what happens.

Lindsay22

I spent several years trying to get doctors, senior life advisors, etc. To believe that something was wrong with my mother.  At the time she was in the early stages. Now she is stage 6. There is nothing anyone could have done, there are no drugs that would have changed this.  It's difficult to accept and like the previous poster said each person declines differently, sometimes at an alarmingly rapid rate.

Iris L.

aalfano wrote:

  Refuses to believe she can't live alone and gets very angry when we talk to her about how things have to change.

This is anosognosia, a characteristic of dementia that causes the PWD to be unaware of having dementia and limitations.  If you try to correct her she will become upset.  This is not the same as denial.  She truly believes she is fine.  Learn work-arounds from the members.  Don't try to confront her about dementia and being unable to live alone.   

Iris L.

jfkoc

amy...please to not be too concerned about the Aricept. Go ahead and  start now if you want but it is usually prescribed early in the disease. Namenda is used later.

Some say there is a benefit, others say there is none and some Drs will not prescribe it.

The bottom line is that there is not a lot of medical help. The good thing is that non-medical treatment is a great benefit. That is where you come in.

The first thing you can do is to stop all conversations about her needing help. She "knows that she does not need help". It is a losing conversation. 

aalfano

Thank you all.  I really believe I am in the right place to get the knowledge and support I need for this journey.