Space Between Dying and Death is Love. Part One

I was not “present” for my sister Susanna’s death nor my mums. Present, meaning being in a state of loving acceptance, to be open to the here and now and whatever arises. It takes a lot of work on oneself and a lot of courage to be present for a dying loved one and I wasn’t there yet. As Susanna, a psychotherapist said, “An openness to the otherness of others. It’s not a free floating openness but in relation to the other. That’s the most difficult thing.”

I’ve only understood what that means four years after her death. To meet a person where they are, without putting anything of oneself – desires, wants, needs – into the space, the pause space. A space to be willing enough to be moved by the truth of the other and to arrive at a place – together – of more peace and wholeness. 

Now my Dad at 87 is giving me the biggest gift. He is dying slowly, allowing me to grow into that space and find ways to release the unexpressed, unexplored grief of my mother and my sister’s passing. 

Love is space. It is developing our own capacity for spaciousness within ourselves to allow others to be as they are. That is love.

Angel Kyodo Williams, Zen priest 

Sitting at the lunch table I suppress the need to howl my sadness. For what life has become for Dad in aged care along with his lunch companions. Elsa is squeezing her eyes together and then smiling at me as her fingers clench in painful arthritic contortion. I hold her hand tenderly, full of emotion and she pats mine, softly smiling.  Marika and Dad, sitting opposite each other, heads bowed in concentration, mirror the scooping of apple crumble into gaping mouths. Dad mutters “Not Good!” when I ask him about lunch. 

Around this table is a collective life of 160+ years, all with interesting stories, filled with pain and beauty, regrets and triumphs, love affairs and loss, buried beneath their institutionalised faces. All you see are ageing bodies. Dad bears the scars of falls, hands disfigured from arthritis and the long white scar on his inner forearm where they took the skin to make new vessels for his heart surgery at age 70. 

Grief washes over me as I witness the diminishment of the human spirit. The big missed opportunity of what Stephen Jenkinson calls “the loss of elderhood”. This incredible diamond mine sits in front of me; people that could be sharing their wisdom, stories, musings on life and gems of ageing, to my generation, the baby boomers. Every one of these “inmates” as Dad would call them has something of value to contribute, but which right now is so far out of his and my reach it makes me weep. 

I’m in Melbourne with my brother Chris, talking about Dad’s end of life wishes. It’s a tough gig. A man who rarely spoke or speaks of his needs unless they were about his physical comfort. He feels that “life is rushing past” him, that’s it just happening to him, that death will happen in the same way as though he is a bystander in the process of his own dying.  Bro lightens the load prompting him with scenarios which though serious, unleash his deep easy laughter at the thought we are bumping him off. 

Self awareness is a prerequisite to expressing ones needs in the death process. For Dad his wishes are clear around the major decisions: no artificial feeding, no resuscitation, no artificial breathing but beyond that the lines get fuzzy. But we go there Chris and I, making sure that this conversation feels real and human. We get the opportunity to flesh these out with his doctor and feel incredibly grateful that this man will be guiding Dad’s end of life wishes with us and the brilliant staff at the aged care facility. 

How you die is a reflection of how you’ve lived. And Dad looks to us to make these colossal life and death decisions as though he’s looking for the guidance he never received from a father that died prematurely when he was 17 years old.  These conversations push him into uncomfortable territory, what Dad would call being “emotionally disturbed” but we simply don’t let him off the hook.  Not much has changed in his thinking since we first started talking at a Death Over Dinner Party but Chris and I feel more clear and at ease. It’s ironic looking back, that this Party was just months before he found himself permanently out of our family home after a fall 3 years ago. 

The more I drop my judgements and resistance and make peace with what is, my joy being around Dad escalates. What I’ve wanted for this man in the later stages of his life, drops away. I come into presence with the father in front of me and we create this intimate space together.  We follow threads of thoughts that lead us to nowhere, pauses that are left unfilled, and just sometimes a diamond appears. we turn it over and rub it together until something of the truth for Dad appears.  It feels like a deep excavation but in the process my compassion builds and my love grows for this deeply sensitive man that has been taken out by a post war trauma culture of distorted masculinity. Much of his feelings are buried under pride and suppression, and his thinking distorted by vascular dementia. 

We form the moment together. He asks me surprising questions about myself that deepen my understanding of him as we follow the thread back and back to him. He’s trusting me and my free words and questions and his throat loosens – able to drink water and tea without choking. The best moments are no words. Hurtling down the hill to the nearby park in howling Melbourne wind and angled rain. Chancing the experience because we both chose it and wanted Nature to move us to a new place of connection.  Sheltering under trees while the worst blew over, both completely exhilarated, like we had just biouvaced on Mt Bogong and survived the night. Dad was always at his best outdoors, innervated by the peace of wild landscapes. Back in aged care he looks like Einstein, his hair standing up in billowy, white wisps. His clothes rain splattered. He looks alive….Dad, “Reminiscent of the life I wanted to bring to the family…the adventurous life”. And somehow at 87 we are still finding it without having to go too far from home. 

Ageing more than any stage of life feels paradoxical. Dad calls these little wheelchair trips out, the freedom to come and go yet feels trapped in a routine not of his making. Moments of clarity followed by discombobulation. Lots of falls followed by none. Childlike in an ageing body. Chris has come up with a powerful statement of healthy ageing after speaking with his friends, many of whom are going through the same experience with their parents. “Stay curious, be generous”. 

Dad in the confines of aged care, has lost this curious capacity that drove him to explore far off places and different cultures well into his 70’s. And I am thinking maybe he never developed the emotional vocabulary to express a curiosity in the inner life of others. His generosity of spirit came more from his smile and laughter rather than deep pockets. It takes a certain kind of fearlessness to share abundance with others, to say YES to what life throws at you. Dad, conditioned to wartime lack, right now seems to only know NO. 

We talk about the 5 regrets of the dying from palliative care nurse Bronnie Ware. “Wish I had the courage to live a life true to myself, not the life others expected of me. Wish I hadn’t worked so hard. Wish I had the courage to express my feelings. Wish I had stayed in touch with my friends. Wish that I had let myself be happier.”

We get through the first one and Dad baulks at the word regret. “I didn’t plan life, it just happened to me”. It’s hard to regret something he felt he didn’t actively choose, unconscious of the subtle but very real choices he made. The biggest sadness he expresses is not comprehending the gravity of Mum’s imminent death 17 years ago. Again, “emotionally disturbed” by Mum’s Illness no concept of how it would play out.  He verbalises how he wished someone had pulled him aside and said “Billy Boy this is it. Sally is not going to make it”. 

Facing these times, deeply and permanently saddens me.  At the same time I feel strengthened in my resolve for my own life and how I want to meet Dad at the end of his. “I’m in the death stage” he says as I prepare to leave his room and get on a flight back home knowing that our conversations this weekend with Chris and I may have loosened something in him. I leave Melbourne feeling like there is so much more to unravel in this mysterious dying process. Dad is teaching me to be present for my own death as I witness him in his. 

We die with the dying:
See, they depart, and we go with them.

We are born with the dead:
See, they return, and bring us with them. 


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