Recording what people with dementia and their caregivers experience
Often times when our families and friends begin to need elder care supports, services and information about dementia, we don’t know where to begin looking for help. By the time we know we need help, we are in knee-deep in the crisis, having to make life changing decisions without enough information. It is a frightening and exhausting time for individuals, their families and care partners.
Three years ago the week before Christmas, my frightened and delirious 82-year-old mother arrived – bags packed, house sold, all the way from South Western Ontario to move in with my equally frightened family.
Only a few weeks earlier she had been driving, cooking and paying bills. Now she couldn’t decipher the hot or cold water taps, was wildly paranoid and didn’t know the difference between night and day. That Christmas her gifts sat unopened under the tree while she sat (often restrained) in a hospital bed. My family and I were guilt ridden and had no idea where to find answers or support. Our family was devastated.
I never would have believed three years ago that today my mom would be living in a long-term care facility with vascular dementia or that I’d be working to create a voice of advocacy for people just like her.
This fall, I became the Lived Experience Coordinator, in partnership with the South-Eastern Ontario (SEO) Alzheimer’s Societies and Behavioural Support Services SEO, to create a Virtual Lived Experience Network – a “knowledge bank” of caregivers and persons affected by dementia and other related diagnoses.
To create meaningful services and supports, the voice of people using them must be heard and now they can be! You can be part of advisory conversations that will be provide input in the design and implementation of those supports and services and a voice in evaluating those changes.
I will be meeting with various Alzheimer Society support groups across the South East region, creating an online space for virtual conversations and am happy to speak to people by phone or receive their stories by mail/email.
Learn more about the project at: http://www.dementiacrossroads.ca/
If you would like to join me in regular conversations – by phone, online, in a pre-arranged group meetings or just find out more information, please phone, email or write me at:
Sharon Osvald, P.O. Box 73, Brighton, Ontario, K0K-1HO
On Facebook Search: Virtual Lived Experience Network