A couple of months ago I was invited to a symposium on dementia, grateful to my denomination for their forward thinking in caring for this ever-increasing group in our population.
Being a baby-boomer myself, among many, we know that statistics tell us we are at risk, we are vulnerable, this could happen to us.
My dear mom, who worked in a nursing home, and also cared for our gentle grandmother, was afraid she would succumb to dementia. Mom, who wasn’t afraid of most things, feared the loss of her memory. Perhaps that is why she and dad played games every night, she was determined to keep her mind active! And when she died, five years ago, I was grateful her mind was sound to the end, grateful for our communication.
Because I know not everyone has that gift.
Our grandmother, mom’s mom was a beautiful soul, and it was hard to watch her diminish with age. I remember vividly my mom describing the night my grandmother lost it, it was a very stormy night, and she was trying to convince the staff in the nursing home she resided in. that her husband was out in that storm. She was very determined to go out into the elements to find him…. even though he had been in heaven some ten years at that time. The staff couldn’t settle her… and finally called my mom to help. Somehow they finally convinced Grandma to go to sleep, Grandpa was safe. And indeed he was.
And yet Grandma had lucid moments, and I remember her telling me with regret that she wished she could have gone to heaven instead of my young husband. The New Years after he died, she was 92, and I remember singing and praying in the New Year with our family. She sang with the rest of us, she knew all the words. We didn’t know she was entering her last months with us, and I cherish those moments.
These are my stories… and many of us have stories too. Recently I was privileged to listen to a story of a patient in hospital, and she gave me permission to share a bit of it. She, with a life-threatening illness was much more concerned about her husband, in one of the dementia units in our community. She talked of him not knowing her much anymore, and her great love for him. When I asked her how I could pray for her, she always said… please pray for my husband.
She was struggling with not being able to visit him daily, something she always did, helping him with his meals. On many visits they shared this intimate moment where she sang to him a song “In a World of Your own!” She would ask him… can I enter your world? And as she sang, she honoured her husband, and was truly present. What a gift!
There is much to learn about this world. There were a number of things I gleaned from Dr. Gemma Jones who lead this workshop I was able to attend. Dr. Jones is a leading educator on this subject. One of the interesting things she shared is that dementia has four stages… and it is often in the earlier stages that people are the most frightened and confused. It is a very difficult time for them, and for those who love them and live with them.
In later stages, their world diminishes… and according to Jones even their peripheral vision becomes much smaller. She encouraged us who visit to wear bright clothing, and even bright lipstick so that the person can see you better, can follow your lips.
Jones is part of the Alzheimer’s Cafe moment, which started in Great Britain, offering safe and welcoming places for those with dementia, their families, caregivers and other professionals. They are now offering these meetings in Vancouver,
I am not an expert in this field, but am grateful for these resources. I have much to learn. Jones encouraged me to share the information… and I’d love to see more public forums and discussions as we seek to better understand, have more compassion, and support the often fatigued care-givers, both at home, and those working with these precious people.