It’s a life of episodes — perhaps a fitting way of describing life with dementia or Alzheimer’s. It’s one thing to lose your health, your job or a loved one, but what happens when you lose yourself? Is there an individual or family tragedy any greater?
And yet it’s lived out every day by thousands of Londoners and most of us will never know about it until signs emerge somewhere within our intimate circle.
In London some 9,000 families wear themselves out in silence at an agony that can rip one’s insides out. Across Canada, almost half a million citizens suffer from dementia and Alzheimer’s. Within 15 years that number will reach one million. Globally, 100 million struggle with the disease — a number that will reach 300 million by the end of this century.
As populations age, dementia cases grow exponentially, primarily affecting those over the age of 65.
These are numbers that hardly tell the story. Alzheimer’s, for everything else it is, is the slow unravelling of a life — or at least the memory of it — until that existence itself has expired. The data, the science, the policies — these all, vital as they are, fail to plumb the depth of humanity in such situations or the personal journeys families go through.
Every aspect of dementia includes exhaustion, both for patients and families. It’s one thing for a person to withdraw into a world no one understands, but the inability to reach into that world and ease the passage is a reality of exquisite sadness. To watch someone you’ve known, perhaps deeply loved, move into a kind of exclusive fog and then darkness is a tragedy that would challenge Shakespeare’s ability to describe it.
Having the seven descending stages of dementia explained by professionals constitutes its own form of foreboding; knowing of the steps into darkness, while instructive, hardly prepare us for the tribulations of the journey.
We slowly watch our friend or loved one drift away like some great ship hoisting anchor and moving off over the horizon. The sheer pathos of watching a vibrant life, a beautiful mind, lose its way leaves us with an overwhelming sense of sadness and loneliness.
The person suffering dementia and the supporting system that surrounds her increasingly fragile life effectively live in two worlds. There are those times when the person is present, lucid and aware, only to be followed by that growing number of occasions when memory is gone and reaching through to consciousness is difficult.
Each stage of decline builds on the next, causing an increasing sense of confusion. The devolving cycle of care is endless — locking doors to protect from injury, administering medication, bathing, assistance on the toilet, the occasional violent response of the loved one to physical assistance, and the increasing loss of memory. It’s the aging process without the ability to really come to terms with it.
But is that really the best way to look at it, to describe what to us appears a journey into lostness?
Research and lessons learned are beginning to teach us that the person suffering from dementia isn’t so much disappearing as transforming, best seen in those moments of joy, smiling, dancing, laughing and remembering childhood.
Instead of worrying about the circumstances of life, the Alzheimer’s patient possesses the ability to live totally in the moment, free to enjoy, when possible, wherever their mind is at.
Families, friends and caregivers are increasingly learning to treasure such times instead of always trying to summon the person back to the present. They discover effective and more intimate ways of assisting with the descent into darkness and learn to capture those shared moments of joy instead of feeling encompassed by sadness.
It is impossible to alter the patient’s ultimate destination, but we can attempt to cast off our own disillusionment and learn to enter into our loved one’s reality. As she reverts back into childhood, we must go with her, not only for her sake but our own.
They are moving into their true selves, what they were before life’s pressures and responsibilities weighed them down. Establishing their own reality, we must find our place within it instead of forcing them back into our own. Their self is still there, still alive, and we still must celebrate a life well lived.
It is a process of transformation for everyone, giving us something redemptive despite a disease that leaves so little of consciousness at its conclusion. As Helen Keller would put it: “Although the world is full of suffering, it is also full of overcoming it.”
Such is the challenge of dementia.
Read this post in its original London Free Press format here.