According to many of the attendees at the recent Genki Conference: Caregiver’s Edition, one of the most profound lessons learned at the Conference was something that keynote speaker, Frances Kakugawa, related about “entering the world” of the care recipient. Bob DeMarco of the Alzheimer’s Reading Room calls this parallel world, “Alzheimer’s World.”
In the Alzheimer’s World, your mother (or dad or spouse) may be 16 years old and waiting for a bus; she doesn’t remember that she just ate lunch; she doesn’t remember that her sister has passed away. Because she lives in Alzherimer’s World, she may be repeating herself over and over and over and over.
Frances’ advice at the Caregiver’s Conference and Bob’s advice on his website is to enter Alzheimer’s World. Do not try to correct your mother (or dad or spouse); she may feel angry and discounted. When you accept that your mother is living in her own reality in Alzheimer’s World, you will accept her reality and you will feel less frustration. She cannot change her reality, but you can change your own definition of reality. You will be treating your mother and her reality with dignity.
While caregivers at the Conference expressed that following this advice would help to relieve the stress and frustration that they feel, at some level I believe that this advice also strikes all of us in another and even more personal way. I believe that we all hope that if we, the caregivers of today, develop Alzheimer’s or dementia in our own futures, that those caring for us would enter our Alzheimer’s Worlds and treat us with the same dignity. I think we Sansei Boomers all hope that someday, if we tell our caregivers that we are going to a dance at Rodger Young Auditorium tonight, our caregivers will respond, “And which band will be playing tonight? Long Time Coming? Free Flight? Carry On?”
Photos and some of the speakers’ presentations from the most recent Caregiver’s Conference are available on our website.
About the Author:
Dianne Kujubu Belli is the Chief Administrative Officer of Keiro. Dianne stays genki by doing cardio and light weight training four days a week at the gym and dances Argentine tango.
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