On Day 14 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI Board member Phyllis Fehr from Canada. This series is about raising awareness of the many lived experiences of dementia, and highlighting the challenges, as well as the reality that so many people continue to live positive and very productive lives even when diangosed with dementia. Thank you Phyllis for sharing your personal story, and all that you are doing for DAI and with your colleagues in Canada.
I AM STILL ME
Hello. My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia. At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments.
It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing.
I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.
I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.
But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. It left a disabling affect on my being.
So, I requested my neurologist to refer me to someone else.
For nine months, while I waited, I became with drawn. I did not want to be Involved. That first gerontologist, left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.
The referral took a while, but it was worth my wait. This new doctor, spoke to ME.
She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. I have regained my voice; I have regained my confidence. I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.
When I joined Dementia Alliance International, I became stronger. This is due to the support we have for each other, online support groups and the educational events they offer. Just being able to see others with the same disease process, doing well, gives me hope and makes me want to change things in the world to help all people who are living with dementia. On 30-31 October 2017, I was pleased to represent DAI at the NCD Alliance workshop: “Our Views Our Voices” in Geneva.
When Canada reported on the CRPD, I also attended the United Nations as part of their civil delegation. I work within Canada along with the government relations’ officer from the Alzheimer’s society to push forward human rights for people living with dementia in Canada.
The Alzheimer’s society of Canada has work very hard with their Advisory board of people living with dementia to put together a Canadian Charter of Rights for people living with dementia. I was able to have a look and give feedback to this group.
I would encourage you to have a look and hear the stories of some of the people who were involved.
Today I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.
Phyllis Fehr © 2018
DAI's vision is "A World where people with dementia are fully valued and included."