By Peter Maeck
The experience of writing a poem, play, or story, or creating a photograph, is like riding a train through wonderful, unexpected scenery. When I wake up in the morning I hurry to get to work because I never want to miss that train. My train derailed the morning of my father’s Alzheimer’s diagnosis. Dad hadn’t chosen a trip into dementia but here he was on track to forget his friends, his family, and even his own name. Dad told me to stay calm, the decline would be gradual, and maybe some good might come from this. What good, I wondered, could come from shock, grief, and despair? The good that came was a new dimension to my father’s relationship with his family, and a revelation to me that dementia’s grip is loosened by the power of poetry, pictures, music, and love. I wrote Remembrance of Things Present – Making Peace with Dementia to celebrate my father’s brave, good-humored journey through Alzheimer’s, and to show how such an affliction can actually draw loved ones closer together instead of driving them apart.
Viewed as a biological deterioration of the brain, Alzheimer’s is terrifying. But seen as fermentation which is not spoilage but transformation – grapes into wine, for example, or milk into cheese – it can enhance the caregiver-patient relationship. Indeed, my father and I moved from a prose relationship into one of poetry which was no better or worse, just different, where we engaged more in rhyme than in reason, freezing time then melting it and joining in a lyrical realm between past and future where, instead of fighting dementia, my father and I embraced the changes it provokes.
When presenting my story at TEDx events, Alzheimer’s Association gatherings, and mental health conferences in the U.S. and abroad, I hear caregivers, familial and professional, confess their frustration, regret, despair, and even rage when dementia is diagnosed. Clearly, caregivers need and deserve caregiving as much as their patients do. People attending my presentations and reading my book have been comforted, consoled, and buoyed in their efforts to care for their dementia-afflicted loved ones.
My book tracks my passage through the Kübler-Ross stages of grief, from resistance to acceptance of my father’s dementia. At Dad’s passing I sense that he is in a state of peace. My own peace is achieved by reflecting upon our shared experience, and ultimately by writing my book.
If art can offer no more than symptomatic and palliative relief from the effects of Alzheimer’s Disease, that is no less than modern medicine has done to date. Ideally, art and science can work together to reduce dementia’s effects and ultimately to reach a cure.
Social media links
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One Response
Peter, thank you for this beautiful explanation of the transformation that can happen in a relationship when Alzheimer’s is present. I experienced much of this with my mother.