“I’m 62. I was diagnosed at 46. You do the math”: Sixteen years of living with Alzheimer’s, and author Christine Bryden is still bringing down the house.
Bryden, one of a group of speakers, made an audience of 300 laugh and cry at A Changing Melody: a learning and sharing forum for persons with Early Stage Dementia and their partners in care, in St. Catharines, Ont., a while ago. No surprise that Alzheimer’s is the second most feared disease (Cancer being #1). What I learned from the forum helped put that fear into more practical perspective:
On overcoming fear and stigma:
- Fear of what others may think often prevents getting diagnosis. Get in early and get help early!
- Your life has meaning. Focus on relationships based on love and connectedness. Don’t let fear mask your worth.
- Reach out over the barrier of stigma to help overcome fears.
- An example from an audience member: “I talk to people in airplanes about having dementia. At first, they simply don’t believe it.” (Love it: educating a captive audience.)
Here are some surprising stories from the dementia front
“Feeling is, we with dementia have no insight. That is so wrong! I have to use drugs to help deal with anxiety in others. Noise and sound are amplified. Multiple conversations are really hard. Part of my brain that controls anxiety has no sense of proportion. “Key words are: SLOW DOWN! The processor in my brain is struggling. “When I need I quiet time, hiding out in the bathroom is a solution. However, my brain doesn’t send ‘bathroom’ signals. Thank heavens for Poise.”
Mary McKinlay, Picton, Ontario (who organizes social events at a retirement home; she blogs at an online journal set up by her son, called My New Adventure – Alzheimers.)
“There’s no word for stigma in Aboriginal context: Response to Alzheimers is RESPECT and INCLUSION!! “Taking care care of elders with Alzheimer’s is considered a ‘gift.’ In the Aboriginal community, educators are trained in gentle persuasive approach. or GPA. Caregiver and family protect the integrity of the person through traditions like story-telling and songs.”
Loretta Loon, Health Policy Analyst, Ontario Federation of Indian Friendship Centres (Canada)
“I delayed diagnosis and treatment. Finally, my wife made a doctor’s appointment … which I conveniently forgot. Once I received my diagnosis, I was worried about telling anyone because of the stigma. I finally got up my courage, and got together with my old group of lunch cronies. They said: ‘We’re very sorry to hear this. But don’t forget it’s your turn to pay the bill.’”
Russ Belleville, U.S.