the monster waits in the shadows

“Dementia, the cruel monster, empty’s the inside of people and leaves their exterior to slowly fade into oblivion leaving the people around them heartbroken and slowly forgotten. The monster waits in the shadows of the people and slowly creeps into their lives until finally it possesses your body and there is no going back.” ~ As written by 15-year-old Mia Dale in memory of her granddad Derek Curley. [1]

I’ve been in Germany for 2 weeks now, visiting my brother Gerhard and his wife Karla every day (except on Sundays when there’s no rural bus service). Both are in separate care facilities, each living in advanced stages of dementia. Karla’s body has shrunk to half her normal size; she sleeps most of the time, sustained by a minimum of food and liquids. Some day she doesn’t wake when I sit at her bedside, on others she suddenly looks up, startled, wide-eyed, sending me a big toothless smile. I hold her ever so gently, the way I’d cradle a humming bird that crash-landed against a window pane. She no longer speaks.

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Gerhard wanders a lot, up and down hallways, testing locked doors, straightening picture frames, in and out of rooms, frequently halting in mid-shuffle to . . . just stand there. He shows tender attention to other residents going about their business, occasionally offers a drooling smile and single word of kindness. When we visit the palliative care section (which we’re free to do), he takes ginger steps towards someone lying in bed, extending a comradely hand in midair. Sometimes we hold hands on these rounds or shuffle arm-in-arm. Afterwards we sit together, very close. He allows me to wipe saliva that steadily runs from nose and mouth; in no time our pockets are full of wet tissue.

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“Service is a relationship between equals: our service strengthens us as well as others,” writes Rachel Naomi Remen, “When we serve, our work itself will renew us.” [2]

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On most days I depart with a joyful heart, a mind untroubled. Today was different: I felt as if a hundredweight had been dropped on me. The cruelty of the illness struck me — and a thought, born of the wish to end suffering, why can’t they just die?

But no: Karla and Gerhard will die when they’re ready, not when anyone thinks their time has come!

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On the walk home I stopped to see my nieces’ ageing donkey. After some hesitation he agreed to hear my confession. “Lean close and listen to what I tell ya,” he honked, “I’ve seen people come and go. Rain, shine, feast, famine: the lot. Nothing you can ‘do’ or ‘fix’ — however much you wish to heal the world. Go and have a good cry and see what lesson presents itself. And now, if you don’t mind, bugger off, I’m busy here. May your life go well.” Fart.

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[1] www.alzheimers.org.uk/blog/dementia-cruel-monster-story  [2] Dr Remen is a pioneer in integrative medicine and founder of a medical student curriculum called “The Healer’s Art”.