Saturday, February 2, 2013

Elizabeth Allen's Open Letter on Alzheimer's to her friends and family

At least half a million Canadians have Alzheimer's disease or a related dementia. One of the first challenges they face after being diagnosed is how to tell their friends and family. Many fear social stigma and isolation from their loved ones. Day 6 contributor Elizabeth Allen, diagnosed  three years ago, has written an open letter to the friends and families of people with Alzheimer's

It 's excellent and a great listen. She speaks to the fear some have around a diagnosis. I understand that people fear changes in friends and loved ones. 
When my father's dementia changed him his friends disappeared. This hurt me more than it hurt him. Think about the extended family members feelings, as well as the patient.
She says that you need to be honest. Many deny a health issue, and try to assuage your fears, but you need to be honest and allow the patient to talk about her disease and her feelings.

In part, she said:
Don't offer me platitudes, telling me that everyone forgets where they puts their keys isn't what I face. Dementia is different than this.
Don't dismiss me.
Ask me questions: What are your symptoms? What are your medications are you taking? How are you doing?

Have an open and honest conversation, just as if I had cancer or another disease.
There are many stages to this disease, this is one phase and for now treat me with respect. 
See me as the person I am now and not how I will be in the future.
Enjoy us for the things we all still do.
Let me make mistakes and understand I am not perfect. 
Don't run away from the disease, you run away from your friends.
See us for who we are, and not for our disease.

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