The Tom Diaries – Twilight

The lesser used definition of twilight is a period or state of obscurity, ambiguity, or gradual decline.  To me, this is the perfect definition for the space I now observe my father to be occupying.

Tom spends his days in a kind of limbo.  His post-surgery rehab is complete and so he must leave Greenwich Hospital.  Yet he is not actively dying, as the medical staff categorise the next stage, so it’s too soon for palliative care.  Going home is the preferred option.  He wants it. Mum wants it, we all want to him to come home.  Sadly, it’s not possible. His medical care is classified as ‘high’ and even with modifications to their ground floor apartment with no steps, the care requirement is too intense.  Even with regular nursing help, even with all hands on deck, the right and heartbreaking decision we must face is to find an aged care facility.  A nursing home. The one place mum promised dad he would never go to.

The site of Greenwich Hospital on Sydney’s lower north shore has had an interesting life. The land was originally home to the Cammeraygal clan of the Guringai nation. Between 1936 and 1977 it was Pallister Girls’ Home set up as a safe haven for girls in need. Tom was referred to Greenwich Hospital post-brain surgery in early December. He’d had two of five tumours removed in an effort to regain mobility. Four months earlier he’d had lung surgery for the first metastatic melanoma tumour. By the time the brain tumours appeared, he was – almost to the day – six months into his new life with terminal cancer.  Now here we are, a blessed two bonus months of Tom we didn’t expect to have. Even more amazing is that he is currently pain free – at no stage, other than post-operative discomfort, has he suffered the physical agony of this hideous disease. Miraculous is – for once – the appropriate word.

But the time has come to leave, and the time has come to tell dad he’s not coming home. I exit the hospital lift on the Banksia level and mum is waiting in reception. She’s sitting on the edge of the seat with her bag on her lap, both hands clutching the handles. She is and looks exhausted. Tom is her first and only love. They met when she was seventeen, a country girl from Gunnedah at her first big city dance.  The venue was a church hall in Manly on Sydney’s northern beaches.  Mum was there with her friend Nola who knew Tom. Nola introduced them, Tom was stunned and instantly in love, mum was underwhelmed.  Tom went home and told his mother he’d just met the girl he was going to marry.  He has told us this story so many times.  She was wearing a purply dress he recalls, and it was booby. Mum always rolled her eyes at this point.  We’ve seen pictures of mum at this time.  She was young and innocent, classically beautiful with a pixie haircut and sparkling green eyes. We doubt she was ‘booby’ but it’s dad’s story.  Fast forward sixty years and here she is, waiting to speak with the hospital counsellor about our options. Waiting to discuss the very short future of the man she met and married three years after refusing to go out with him.  The man she raised three children with, the man she travelled the world with, cared for, who took care of her with such love through many years of her own rehab.

Back at Greenwich, we are lucky that counsellor Megan is somewhere between my age and mum’s. She is warm, honest, compassionate. She has just put her own father into a nursing home. You are doing the right thing she tells mum. Mum folds and refolds the sodden tissue. We are all criers in our family but not like this. We cry in movies, at school concerts, watching our kids play sport. Happy/sad tears. These are just sad tears. There is no other option Megan tells mum.  He must be safe, you must be safe.  He needs a high level of care and these facilities will provide that.

Facility. Surely we can find a better word.  I have always been sceptical of euphemisms, but now that’s all I want to hear.  Desperately.  Not a sales pitch, not a pollyanna story, but something better than facility.

Megan leaves the room to source reading material for us.  Mum and I look at each other. I search for ways to soften the messaging to dad. Let’s not call it a nursing home I offer. Can’t we just say we’re looking for somewhere closer to home. Mum’s not convinced. It’s the first thing he’ll ask and I’m not going to lie she says.

Outside dad’s room – Banksia 8 – we pause to gather our thoughts and plan the conversation neither of us wants to have. My sister really should be here, a nurse, the family medical expert, the one who knows how to handle such a difficult conversation. She is our guardian angel, but she’s out being someone else’s guardian angel today as a community nurse. Caring for patients in much the same state as dad. So, mum is here with me. I’m ok professionally. I’m usually calm and composed. But I am way out of my comfort and experience zone here. I wish Kelly was here I say.  Me too says mum, Kelly always says the most beautiful things at times like this.

Dad is sitting in his ‘office’ – an armchair in the corner of his private hospital room at the window – reading the paper.  The mobile table is pulled up close ready for lunch.  The daily newspapers and hospital meals have become his world.  He is institutionalised after so many weeks in hospital, he thinks he’s in a hotel. The staff (and Kelly) also tell us he is withdrawing. He sometimes reads the paper held high in front of his face, obscuring us as we sit opposite him chatting. His world is shrinking we are told, this is normal, he is reducing his life to the activities he can control.  Reading the paper and ticking meal options on the daily menu.

The moment we walk in dad says “What’s happening?  Am I going home?  I’m not going home am I?”  Mum wants to sit close by dad and hold his hand while she explains next steps.  This takes some maneuvering while we get dad’s legs untangled from the mobile table and move the chairs around the hospital bed.  Several minutes later, mum gives up and stands by his chair takes both his hands and tried to explain.  They both sob.  Both heads rested on each other’s shoulders, hands gripped tight.  “I can’t do it, I’m so sorry” mum says over and over “I want to bring you home but I can’t do it”  I have retreated to give them space. It’s the saddest moment of my life watching what is effectively a goodbye.  After a few more minutes mum sits down and dad looks at me.  Then looks back at mum.  I retrieve the list of ‘facilities’ from her bag and we start to talk about options. Dad is too upset to talk so I tell them I’m going to call Kelly and leave the room.

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