My father, my patient
Josie Crawley tries to make sense of her father’s death, and in the process, seeks to become a better nurse.
Bernard, my father, was a storyteller. As a child, I would roll my eyes as he settled into reminiscent mode. He would look into the distance, his British accent thickening with echoes of his childhood – and I would cringe in advance, in case the tale revealed some of his generation’s casual verbal racism, so contrary to how he lived his life.
Perhaps I heard his stories through my own lens, for in my recollection, my father liked to focus on close calls where he beat death.
His life story was punctuated with near misses: losing one year of childhood to convalescence from rheumatic fever; being a boy during the Blitz; waking up from unconsciousness during a London blackout; twice surviving electrocution by high tension wires and, most recently, knowing how and when to get out of his high stress teaching job while younger colleagues died of cardiovascular disease.
Bernard’s life seemed charmed, he appeared to be immortal. At age 87, his only medication was eye drops for glaucoma.
He was fastidious in his appearance, effortlessly maintaining the myth of problemfree ageing while my mother lived with multiple conditions.
Bernard had a vague ‘‘survival plan’’ if anything ever happened to Nan – he would revert to the traveller he’d been in his ‘‘single days’’.
‘‘Josie the nurse’’ knows people can’t live forever, but my father dying first, and leaving Mum alone was never entertained as a possible future; not by him, and not by me. I implicitly believed in him and his plan. He was always a man of absolute integrity.
But a year ago, Bernard’s story suddenly changed – something was seriously wrong.
He’d been quietly worried that he was slowing down, forced to rest in between bursts of gardening, and sporting an abdomen of changing shape on his thin frame.
When referred to a specialist, their communication was blunt, but not clear; accurate, but not kind, and truthful while withholding information.
My father felt he’d been thrown on a scrapheap, to wait.
He was told things like ‘‘we won’t know what it is until we see the results, but your anaemia does mean we wouldn’t operate. I’ll see you again when we know what we are dealing with’’, and ‘‘If it is cancer, you probably have about six months, there is nothing we can do’’. These demolished his positivity and dashed his hope for a future.
Not long after this, I got a panicked call from my mother and my siblings concerned that Dad appeared to have given up.
Bernard had been referred for a colonography ‘‘within a week or two’’, but the appointment never happened. Every day my mother checked the flowerpots outside the door for a misplaced courier package. Nothing arrived and nobody called.
I lived in Dunedin, nearly 800km from my parents’ home at the top of the South Island, and, through the geographical distance, my ‘‘nurse head’’ knew what my ‘‘daughter head’’ rejected – the painful truth that no health professional had clearly communicated to my parents that my father was walking the palliative care path.
So mum’s phone call snapped both my nurse and daughter heads into action. I needed to offer comfort and hope, and initiate support from healthcare professionals.
My parents were an elderly couple in shock, struggling with no definitive diagnosis or knowledge about how to begin this new journey, or even their destination – only that the colonography was required before it could start. They didn’t want to be a bother and were left in a holding pattern, endlessly circling an unknown land.
Bernard presented a brave face to his GP after he insisted on driving there himself. However, at home he became fearful as he struggled to cope with his new reality of bloating, nausea, pain, and fatigue – all symptoms of the unspoken diagnosis of cancer. I needed to lovingly navigate my parents through the health care system, to advocate for the prognosis needed to access palliative support.
It turned out that ‘manageable’ pain for my father meant just below excruciating.
Bernard had not been truly sick since he was a child and had no idea what was normal.
Colonography day dawned to yield clear, decisive and inevitable results; my father had such significant bowel masses that the private colonography was not possible.
He asked me, ‘‘his daughter the nurse’’, to ring my seven siblings and let them know what was happening.
Putting on my nursing head, I survived my own pain as I informed, educated and then comforted brother after sister. I needed a framework through which to cope, so I started with the eldest and worked through to the youngest child. As a sister, I told Dad’s new story, remained hopeful, but did not provide false reassurance. As a nurse, I quickly assessed (I do not know how long he has, perhaps months but it may be only weeks – no, don’t book for a month – come sooner), and interpreted what the health professionals have said to my family.
My nursing head ignored my father’s previous narrative, his immortal story.
The nursing head knew how to interpret the gaps when he talked, drawn-in breaths, no stories – it was hard to get him to come to the phone. My daughter head said: ‘‘Get there, get there now, get there yesterday!’’
I booked my tickets and presented my parents with a fait accompli. The relief in my mother’s voice told me I had done the right thing; my father let slip the real extent of his fatigue when he promised to ‘‘try to shave for you, dear’’.
Bernard is in bed when I arrive – that’s a first. He exhausted himself putting out the recycling bin.
Except for his trip to the hospice, it is his last time outside. He sleeps and I see him unshaved for the first time in my life.
He wakes, lets me take his hand and says: ‘‘Have you come to keep me alive for longer (have you come as a nurse?)’’.
I reply, ‘‘No Dad, I’ve come to make sure you are as comfortable as possible for what time you have left (as your daughter, who is a nurse); and before you ask me, Dad, no, I will have no part in making that time shorter’’.
He grips my hand and says: ‘‘I didn’t think you would, dear’’ (I flinch, realising he had thought about it).
When the GP comes on a home visit, she sees a shaved man sitting up in bed. Bernard has the energy to be social, to tell jokes and is surrounded by a supportive family.
Using up his day’s store of energy, shaving for the woman doctor/visitor; coping by joking, his way of minimising his reality and accentuating the positive. He would find it an affront to his honour to do otherwise.
We conspire to tell the GP that he has managed to sit up in a chair for 20 minutes each day; that he showered, dressed and shaved for her. He honours his generation by apologising for ‘‘being a bother’’ and ‘‘requiring a home visit’’.
Here is my plea to all daughters, sons and health professionals – don’t listen to his words alone, trust your senses: look in his eyes, at his hands and what they express. The gap between his words says more than the words themselves. Make time to hear the family stories.
When he says the pain is manageable, find out what that means before deciding pain relief is adequate. It turned out that ‘‘manageable’’ for my father meant just below excruciating. He needed a realistic goal – to control the pain so it does not become his overwhelming reality. My father had journeyed around the world; but he had not personally travelled through pain or serious illness since a young lad. He needed a map, and a trusted navigator.
From this experience, I now work to build my practice – to have more of the daughter in my nurse: to ask, see and make sense of each family’s stories, like a daughter does, to nurse with committed care.
My father was passionate about education and had a high regard for health professionals. With my mother’s consent, I have not changed names in this narrative.
I think he would be pleased that, in his last days, he enabled me to fuse my roles as both his daughter and as the daughter, his nurse.
A few days before his death, my father went into the local community hospice. He died on February 17, nearly two long years ago, surrounded by family and caring nurses with the lilting tones of his childhood.
I was not present, but my sister tells me he was a protective father to the last, holding out until she had company before letting life slip past. Always a gentleman.
As was only fitting, his funeral was a storytelling event; peppered with jokes, salted with respect and love. He is now comfortably at rest in New Zealand soil, under the shade of an English oak. He is still a part of my every day and I wish him peace, and thank him, for being my dad.