When the Mourner is in the House
The body of grief lets you know it's there
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In this newsletter I write about being a caregiver to my husband who has Parkinson’s Disease and about the ways I am learning to tend myself as I care for him. The journey is a challenging one, that is often not talked about.
So I share these (almost) weekly poetic ruminations to show you how I summon strength, reap joy, muster courage and bolster my resolve to keep on living and loving.
I hope they inspire you to do the same.
I had been hovering between archetypes, listening for a thread of thought, written words, or body symptom to help me choose which one to deepen into here.
Then, on the ferry to a thanksgiving dinner at my dads’ house in Saanichton, as I read From May Sarton’s Well, a thoughtful book of collected poems and essays by the writer, I was struck by these last few lines from a poem titled Dutch Interior.
Raw grief is disciplined to the fine thread
But in her heart this woman is the storm
Alive, deep in herself, holds wind and rain,
Remaking chaos into an intimate order
Back home later that night, I lay in bed with a tummy oh so tender.
Was it too many potatoes? Or not enough water? Or Nerves?
When Gregory cooks, he changes his plans according to what he feels capable of doing. He finds contentment in the cooking and a creative fire to tend us as he sifts and sorts the aches and pains, tremors and depression. This slow decline, leap off that tall building called health with a parachute that is unreliable called ageing and illness. With the sureness of descent, he rallies around his strength to feed and nurtured as he has done all our 22 years.
It was how he made his move, resumed our connection after I broke up with my boyfriend. (A few weeks before, not realizing I was moving in on my own, he’d disappeared along with his offer to let us borrow his truck, his feelings too close to bear the drama of seeing us together.)
“Can I come down and cook you dinner?” he’d asked, once I’d settled into the teal and maroon cottage nestled into the ridge at the top of Orchard Road.
My first house alone in eight years, here we began to weave the story of our love.
Grief surfaces at times as nausea, heavy shoulders, clutched heart.
In the middle of another night, it was heartburn and a sharp stone in the centre of my solar plexus. So much love I poured into and through me as I lay there, imagining my body filled with beautiful energies and caring words toward this tender being doing her best to be here for herself and her husband.
And for her father and his wife the day before. Gregory and I had talked about it in the car on the ferry over, planned our strategy for compassion and a standing cue for letting each other know when we were being triggered. Though neither of us needed to use it. I held my own, didn’t let myself get agitated as I listened to Dad’s plans to drive down to Arizona in a motor home at 88, despite his mind’s blossoming forgetfulness and body’s advancing exigencies.
I feel the warm breeze of the electric heater on my knees and thighs.
The house we live in now gets cold easily and doesn’t have wood heat. Though it would have been difficult for Gregory to chop the wood as he did for all those years in the loft.
We are not on Butterstone Farm anymore. Those fourteen years have come and gone. Now in year three of this new house, we love our new neighbourhood. Love the people, their friendliness and care, some of whom have become so close. We belong here, he in his illness and I in my role as caregiver. Our neighbours make space for us, show sensitivity to his difficulties and to my challenges to keep up. My challenges to move beyond limited perceptions of myself. My shadows too. And his.
Cooking me dinner takes him all day now. After standing for any extended time he needs to pause, lie down and put his legs up, or stretch his back by pulling against a chair and squatting, head dropping down, spine cracking open.
At night he tremors. Wakes himself up and sometimes me. That is when I am sleeping. When I am awake and he sleeps, I envy him. Until his arm shakes, and there he is on the bed beside me, talking himself calm, convincing his arm that it’s okay to “settle down, settle down.”
This is hard. To see the one you love struggle so. To watch his face grow ragged from the constant exhaustion, barely hear his words at times, his voice becoming softer so I have to ask him to wait until I shut the tap to hear them.
This heart, aches. Aches from the proximity to pain.
I felt her again, last night, although I slept right through to 5:30am, the first time in weeks or even months. Like a hook entering a fish, or nails to a blackboard. Ouch! I think I am going to be sick, I heard. I let myself feel it, the body contraction. Oh this ache, familiar. Oh this heart, tired and torn from the witnessing of such gargantuan effort to live the daily tasks.
Though we are not alone. I have friends now who struggle, whose hearts ache from loss, many losses. Around the world, in places from Israel to Ukraine to Afghanistan, and everywhere in between, people at war with each other, themselves, the earth.
Yes, life is hard. And so beautiful. Miraculous.
This week, Gregory and I started dancing again after a several months hiatus. As we swing around the living room floor, our smiles widen with the spins and twirls. I see his body take on joyful postures, his head reaching back as he holds my hand, a trickster’s glint in his eye.
When he tells me how uncomfortable it is to move, how his body is a stranger that doesn’t do what he wants, the joy tempers. But he is still here, still trying. For that I am grateful.
At dinner, when I ask him what brought him joy, he says still being able to make food for us brings him contentment. Joy not being the right word, though he is willing to entertain it.
So this is what it’s like, when the Mourner is in the house. Grieving the losses while celebrating the available joys and calm. Learning to embrace an unknown and unknowable future. Compassionately doing the best I/we can.
P.S. Music helps. While I was editing this post, I listened to this exhilarating piece from master jazz man Keith Jarrett, who was a favourite of my meditation teacher Rob Burbea and a few other assorted songs. Here’s a link to the whole playlist.
Love this one. It is more raw - and captures that ebb and flow of joy and grief that so many of us experience in different ways throughout the day every day. Love the photos and how you intertwine conversation with the ongoing experience.
Thanks Gail for reading my words. I would love to hear what music helps you!