A new conversation about dementia

November 16, 2016 | Editorial | Volume 20 Issue 23

When the diagnosis of dementia hits you up close and personal, as it has me with the decline of my spouse Marlene due to the disease, it sends you on a grief journey that clouds your perspective on life. The questions come fast and furious.

Why did this happen to her, a person so dynamic and useful, so looking forward to fulfillment of dreams at the end of the road, to spending time with family and friends, perhaps some travelling and learning of other cultures, being a gracious grandmother and enjoying the special bond of close friends going through the aging process?

Why are we, as best friends through all of our varied experiences, now confined to limited conversation, the sharing of life on a very basic level—looking through family albums, taking short walks and hour-long drives in the country to enjoy the inspiration of nature, drawing on the deep reservoir of love and affection from family and close friends?

This was not the way it was supposed to be. This was not the anticipated destiny towards the end of life’s road. How, in the providence of a creative and creating God, could this come upon the lives of blessing and peace, the crushing of two spirits that were bound as soul mates?

There are no answers—only more questions. Until one resolves to climb out of that cycle of despair and take another look, change the lenses and see what was a new burden instead as a blessing, an opportunity, a new challenge calling for new ways of looking at something that is conventionally considered a dread.

I was helped along this path during a recent experience that opened my eyes to new possibilities, a new awareness that persons with dementia have not basically changed their personalities or a desire to live normal lives, and who experience deep friendships and function as normally as possible within the larger context of society.

I listened to four panellists with early dementia tell their own stories, in their own words—the first of this kind of event in Canada. They were able to voice their frustrations, appeal for understanding of their memory loss, and ask that family and friends don’t forsake them in their new state, but hold them, as before, in our affections. It was powerful and moving.

This, according to the professionals and caregivers in the field, is changing the conversation about dementia. Rather than looking to medical science to diagnose and treat, and then shunt these persons off to an institution, we are entering an era of engaging them with support persons, making their surroundings—even in designated places of care—as much as possible like the homes they have left. Down to the finest details of arranging furniture to the quality of their food. There is a new focus on well-being, on the quality of life, rather than just the biomedical view of dementia.

Here in southern Ontario, the Ron Schlegel family have been pioneers in fostering this new discourse. They have taken a multi-disciplinary approach to aging, recognizing it as one of the biggest challenges of the 21st century. More than a half-million Canadians are living with the disease. That figure is expected to double in the next 15 years, with another 1.1 million being affected directly or indirectly.

The hunt for a cure to dementia is a long way off, say the professionals, and there are from 80 to 100 different kinds of dementia. So the resources of the Schlegel enterprises are a huge gift to families and congregations. One in every 30 Canadians is affected, estimates Jane Kuepfer, a Schlegel specialist in “spirituality and aging,” meaning that this is a new service front for our congregations.

Kuepfer asks us to get over our fears for our own future, and to become familiar with how dementia works, erase shame by loving persons just the way they are, and walk alongside caregivers in their difficult journey.

“Human beings are complex and beautiful creations who evolve and change throughout our lifetimes,” she observes. “None of us are who we once were or who we will be in the future. God is with us from the beginning and beyond the end. We can love as God loves, and pray to see with God’s eyes, to have the compassion of God’s heart for one another.”

See also: “A living death.”

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Thanks so much for sharing your thoughts, Dick. My mother has Alzheimer's and doesn't know me any more. But I am thankful for the emotional connects that are still there. I still love to spend time with my mom, singing with her the old songs of faith! She still knows all the words!! Your words are an encouragement to me, since I am sometimes afraid for myself and this terrible disease. But I truly believe that "God is with us from the beginning and beyond the end." That is where I place my trust, too, as I walk close with my mother through this time. God be with you, too, as you share this time with your wife.

Beautiful, Dick. Thank you.

Thank you for this personal and moving piece. So many questions in the "darkness" of walking with dementia . . . and it's often a lonely walk, even with the best supports. I like the image of Jesus as the bright and morning star; you see that star after a long night.

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