‘I nursed my terminally ill husband at home’
At just six years old, little Minna Capper already has a book dedicated to her.
The Accidental Carer is the country’s first self-help guide to home-based palliative care written by someone with first-hand experience, Minna’s grandmother Ros Capper.
Ros spent three years caring for her husband Mike, Minna’s granddad, at their Auckland home following his diagnosis with terminal cancer in 2012.
The little girl, whose drawings feature in the book, was a big part of the couple’s last few years together, spending one night each week with her grandparents.
“Minna was our joy – she didn’t know what was happening and just beamed love at us, really,” says Ros.
“It was wonderful. Wee ones really do live in the moment. To be worried about the future was irrelevant when you were blowing out candles, playing with play dough or watching her leaping from the couch.”
But as much as the then four-year-old was a cheerful diversion, the strain of caring for a terminally ill person was never far from the surface.
Mike, who had been having annual checks since 2003, knew his prostate was enlarged but his terminal diagnosis, which came just after Christmas, was a shock. Not only did he have prostate cancer, the disease had also spread to his bones.
The couple, who met as social workers when Ros was on her OE in the UK, spent the next two months dealing with a flurry of consultations and appointments. Their focus was test results and treatment.
When they finally came up for air, Ros (76) realised she had been “accidentally” flung into a role she had not been prepared for – that of palliative carer.
Mike, an advisor to families dealing with Alzheimer’s, underwent chemotherapy and radiotherapy. As a patient, the “gentle Englishman who loves opera” was greeted and acknowledged, tells Ros, still speaking of her beloved husband in the present tense two years after his death. She, meanwhile, felt like a “ghost in the system”.
“It is the same message you receive when you are a mother of small children – the word mother isn’t valued and here you are again as the wife or carer. If you are not acknowledged, your self-esteem ends up around your ankles.”
Desperate for any information on how best to handle the situation, Ros tried to find material on homebased care written by those who had hands-on experience of it. There was none.
With support from family – the couple’s two sons and Ros’ two sisters – friends and medical experts, she and her husband of 47 years came up with innovative ways of dealing with the emotional and physical challenges they were facing.
Ros set up what she calls “home teams”. There was the driving team, people who were available to take Mike to appointments; the “dinner ladies”, friends who would come and cook a gifted My Food Bag dinner, then join Ros for a glass of wine on evenings Mike was at his worst; and the “talkers”, the people Ros could have heartfelt conversations with.
“I was very dependent on my sisters – one flew from Australia and stayed for weeks. One of my sons rang every day and visited a lot, but you know this was a big thing for them as well. They might be men, but they were grieving for their father.”
She says while she and
Mike were both unnerved by the mention of hospice, believing it meant “the end”, he did stay at one for a week early on while the rest of the family set up an electric bed and other support gear in a special room at home.
“He loved it – he had his own room and he was cared for,” tells Ros. “And it was where I found a whole lot of other women in their
seventies going through the same thing as I was. It was such a relief to find others in the same situation.”
Mike’s condition plateaued during his treatment – in the book, Ros relates how, despite being warned not to swim in a public pool because of the risk of infection, Mike did it anyway, thrilled to be doing something normal again – but the artificial wellness was a double-edged sword.
“Initially we’d been having really honest conversations.
They stopped. Once he began deteriorating again, the trick was how to pick those talks up again because there’s a sort of hopeful bubble that starts to form. Somehow, we danced out of the terror, but I didn’t know how to burst that bubble of hope – nor did anyone else.
“Mike talked to lots of people trying to work out what was happening. He remembered three days before he died that he was dying, then he called us all together.”
For the last five months of his life, Mike was bedridden. During that time, a personal carer helped Ros with the washing and bed-making through the publicly funded Needs Assessment Service.
The provision, she says, was a god-send. “He was very weak. It is quite a scary thing to have someone in your home who is too fragile to safely shower.”
Two weeks before his death, Mike (72) was moved to North Shore Hospice. He died in
April 2015 and his family gathered at his bedside the next day. Encouraged by her mother, Minna had drawn pictures of special times with her granddad – eating fish and chips, sharing sushi – on the sheet used to cover his body.
“My experience was all
DIY,” says Ros. “There weren’t just gaps in information – there were chasms. In my book,
I advise people not to wait until one of them is overwhelmed and the other is too ill to engage about meaningful things.
“You have to be assertive, ask for help – and for family and friends to step up.
“Having said that, a lot of gifts came from this. It’s hard, but it’s a very deep experience to watch someone become ill and then go through their journey with them.”