We continue to share members stories and other topics related to dementia for World Alzheimer’s Month 2016 #WAM2016 DAM2016, and it is wonderful to hear from some of our members who have lived for more than 20 years with dementia.
We thank Jeanne Lee, one of the original members of Dementia Advocacy and Support Network International (DASNI), whose leadership DAI has followed, for sharing her story with us today.
In spite of the changes in cognition and health, many have lived and continue to live much better with dementia than the public perception of how it is of life with dementia; they have thrived with and beside dementia, and chosen not only to die from it.
This is Jeanne’s story…
“Living well with dementia”
By Jeanne Lee
“This is a story of a mother of five plus their partners, grandmother of 13 and great grand mother of 4. A wonderful best friend and partner and many friends and family. That’s me and I count my blessings many times everyday even with the diagnosis of Alzheimer’s and with many symptoms of PPA.
I am writing this to wake up the world to our cause to be respected for who we are and what our diagnosis says on a piece of paper or on a computer. Too many years doctors’, scientists’,speakers’,and everyone who thinks they know everything about what WE live.
When will the big money for speaches be spent on thee experts who live 24-7 with it surrounding their every moment. When will every organization having to do with Dementia be required to have these experts on Boards which are deciding our lives. Deciding to put all money into the cure that is years away instead of taking care of us now. How many of us can afford to get to an International Conference which Is All About Us. For gods sake who belongs there.
I am one of the few still fighting after 21 years diagnosis. I survived attempted suicide, 3 years being put in mental institutions for depression, writing a very successful book; Just Love Me. My Life Turned Upsidedown by Alzheimer’s. I also was a member of 9 national and international Alzheimer’s groups on the Boards of 3 and traveled the world on my soapbox.
Wake up world all; we want is Respect.
I had a note from a sister in dementia “What Would a Day All About You Be Like”
To make this short I just completed a six week Vacation all about me. My Family made it all possible and I truly wish all these Buddha Moments for every person touched with or by dementia. A special mahalo to Vern my partner in care and best friend for wanting me to have this treatment and love.”
Copyright: Jeanne L Lee