“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 used to cradle a humming bird that had crash-landed on a window pane. Very rarely, we share a giggle at a secret joke. 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 offering a drooling smile and single words of kindness. When we visit the palliative care section (which we’re free to do without hindrance), he takes ginger steps towards someone lying in bed, extending a comradely hand in midair. Sometimes we hold hands on these rounds or perambulate arm-in-arm. Afterwards we sit together, very close. He allows me to wipe the saliva that steadily runs from nose and mouth; within a short time our pockets are stuffed with 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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Most times when I leave, my heart overflows with joy, free from everyday worries that occupy the wandering mind. Today, however, it felt as if weighing a ton. The cruelty of the illness struck me — and then a thought: why don’t both just die?
On the long walk home I pause to see Stroppy, my nieces’ ancient donkey. With a short honk he ambles near to hear my confession. “Lean close and listen to what I tell ya,” he replies, “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. I suggest you have a good cry and see what lessons pop up. Now, if you have nothing for me to eat, 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] www.rachelremen.com
Good morning from New Jersey, Peter. I am walking a friend with suspected Lewy Body Dementia home. Also, my mother-in-law had Alzheimers for 12 years. Im sorry you have to see your loved ones this way, but you are blessing them by your familiar and compassionate presence. I ask myself, “why” and “what am I to learn from this”? Gratitude for the life we’ve shared, and a reminder that everything can change in an instant help me cope. Thinking of you with love.
Oh Peter, what love you share with us here. Much gratitude. Many blessings to you and others whose family members drift away, caught up in the swirl of dementia.
Oh Peter thank you for your service in so many ways and for sharing your journey, lessons learned and full heart.
Godspeed to your brother and his wife.
I know the dementia story too well. Young Mia has penned it so accurately. 🙁
Thinking of you, Peter.
Take care,
KME
Dear Peter, I have been thinking of you as you’ve been making your journey of loving kindness. As we grow older, I find it very challenging to say goodbye to my loved ones, especially when the end of their journeys seem to drag on and on whilst they are unaware of their surroundings. You were so very wise to undertake the hospice training and work those many years ago. How many people have you helped depart this world? How many grieving souls have you comforted? Too many to count for sure. Now as you give comfort to your dear brother and sister-in-law, please remember to seek comfort for yourself.
We are holding you in our hearts,
Jim & Rita
Thank you for sharing your journey with us Peter. You may think you cannot heal the world but you heal us all – one person at a time – each time you write, speak or come into contact with us.
We also think your donkey friend is quite wise – and clearly shares your sense of humour.
May your life go well. We are thinking of you and sending healing energy to Germany.
Beautiful.
Hand in hand or arm in arm in a connection of joy . Such intimacies touch the heart.
Your kindness and healing is appreciated and loved by all that are touched by you. Please remember to care for yourself as well.