In memory of Jack and Ruby
By Laurie Hilsgen
I never met the man who inspired the creation of Carers New Zealand.
His name was Jack Laird, and he died in the kitchen of his Auckland home in the early 1990s, preparing breakfast for his wife, Ruby.
I first heard of Jack on the Holmes programme after the bodies of the elderly couple were discovered in their home, no one knows quite how long after they both died.
Ruby was disabled, unable to speak or move without assistance.
There were signs Ruby tried to help her stricken husband. But she couldn't. It was as simple as that.
I still think of Ruby's last hours, watching the sun come up and go down with no food, nothing to drink, unable to attend to the needs of her body or her husband's. Unable to reach the telephone just metres away. Time passing until she died too.
No neighbour or family member knocked at the door to check on the Lairds because, like many elderly New Zealanders, they didn't accept or ask for help.
They kept themselves to themselves - easy to do when you have no children or close family, no visiting medical professionals, homehelpers, charity field workers, social workers, pastors, neighbours dropping by, or friends from the club.
No one missed them because Jack did everything for Ruby, including carrying her up and down the steep levels of stairs linking their home, garden and garage.
Neighbours were concerned for Jack but he made it plain - very politely - that he preferred to manage alone.
In those last weeks Jack's confidence about this seems to have wavered. Did he have twinges of the attack that was to kill him? A decision had been made to sell their home and move to something more manageable.
As I watched Jack and Ruby's story unfold on Holmes, and in the newspapers, I was struck by how easy it is for carers to slip from society's view.
How easy it is for the waters to close over when no one cares for the carers.
It is hard sometimes to care for the carers when they turn their backs and struggle alone up the stairs, ignoring risks to their own health and that of their family member.
I was still a new carer then, turning in tight circles within our rural health system, thinking ‘what about me?'. I bit a few outstretched hands and sometimes, when I reached out for help, I lost fingers ... developed fists.
In those first years I made many mistakes, learning ‘on the job' how to cope with incontinence, grief at the irrevocable metamorphosis from lover to carer. How to recognise the signs of infection, how to shower and shave a man, how to single-handedly wipe someone's bottom while holding them upright. How to administer an enema. I clipped his finger and toenails instead of mine, washed his hair instead of mine, dressed him well but threw onto my own body the first rumpled thing I could find each morning.
I struggled to keep the big house instead of moving to something smaller. Clung to the big job instead of quitting for something more sensible. Relinquished friendships I had no energy to maintain until, one day, I realised the only people I saw regularly were those I paid - care workers, cleaners, a gardener, the student who walked the dog. Many of those good people became and still are my friends. But in hindsight, my life was badly unbalanced.
One of the people I did reach out to, through the New Zealand Home Health Association, was fellow carer Dorothy McCaw, of West Otago. I had written to Sonja Davies, asking for her advice about creating a national, united voice for carers. She gave my letter to the NZHHA, which passed my details onto Dorothy - one of its members.
We had a shared vision to create a ‘collective union' for New Zealand's 420,000+ family carers. To reach out to the Jack Lairds, go right into those homes at the tops of garden steps with information about helpful services, the offer of local support groups, the odd telephone call, greetings at Christmas and other holidays. To penetrate the lace curtains and layers of pride and tell carers it's okay - necessary - to put their oxygen masks on first so they can continue to care for others.
I was one of the carers who, like Jack, turned blue from lack of self care. I regret the cost of this lack of self-care to my mental health.
Like many carers I learned the hard way how to care for me too ... one of those hard knocks, self-inflicted lessons we see in the making in every community in New Zealand, when we meet carers with stiff upper lips and trembling cups of tea.
We don't know exactly how to help them. Every situation and person is unique. The foundation of our relationship with carers is respect for the specialness of their circumstances, of their relationship with their family/whanau member, of the complex feelings and factors that underpin their caring role.
Perhaps the best thing we can offer is to let them know Carers New Zealand exists ... just for them ... run by experienced carers whose own hard-won knowledge may offer some protection for the vulnerable, outstretched fingers of new carers.
We also want to support carers who make a decision not to care, or to stop caring.
Eventually, even when we snap on the oxygen mask, there's no air left in the tank.
Running on empty can lead to abuse, to relationship breakdowns, to physical and mental burn out, and to financial ruin. It leads to Jack Laird collapsing in the kitchen, with no back-up for Ruby. It leads to Laurie Hilsgen pinching her partner's cheek when he won't bend his knees in the toilet, and she can't hold his weight a second longer if he doesn't pay attention. It leads to Janine Albury-Thompson strangling her daughter. It leads to heartache, to sadness, and to an involuntary end of the line.
When the day came for me to admit my partner to residential care, I had reached the conclusion that for carers there is no such thing as a perfect solution, or a right solution, but that there is no arguing with the end of the line.
Carers who resist the end of the line suffer in many ways, and often they die. As the rope of my life frayed I had regular contact with our good friends John and Yvonne, who lived in Whangarei. Yvonne's health had been poor for years, and recently she had suffered another serious stroke. Her incontinence, Crohn's disease, arthritis, gastric reflux and total dependence on her husband, created an overpowering burden for John, with almost no outside help.
One morning John and Yvonne's neighbours noticed their curtains were still closed. Unlike the Lairds, my friends had daily contact with neighbours, despite their lack of close family. Someone peered through a gap in the drapes. John was dead on the bed, Yvonne distressed but unable to move in the hospital bed beside him. He had died in his sleep at 73. Yvonne was placed in a local rest home and, within a few weeks, she died too.
I had avoided contacting John for several months. Our last visit ended in anger. He thought I was overly extravagant for employing helpers so I could continue working and pay the mortgage - why didn't I cut my cloth to suit my situation? I thought he was a fool for coping alone with an impossible situation, when he could afford the help he needed.
Maybe we were both right. Mostly, when I think about our respective approaches to the end of the line, I think we each tried to do our best until we couldn't anymore, one way or the other.
I often wonder if things might have ended differently for John had he received more services, or paid for them (like many elderly carers he was incensed at what he thought was a lack of adequate government and hospital support, and refused to pay privately for services even though they could afford to; they left a substantial estate for their nieces and nephews). His lesson is an important one for elderly carers especially - put your oxygen mask on first. Beware of the end of the line.
I also often ponder about the complex, intimate, vital partnership between family carers and home support workers and volunteers.
Access to home support, continence advice and supplies, personal care, respite care, Carer Support, assessments, and so many other services, is a crucial foundation for community health.
Carers New Zealand extends its support and aroha to our hard-working, caring friends.
We wish for our helpers and health workers better pay, better training, safe working conditions, and recognition for their important role in our lives.
There is no easy or perfect answer to the challenges we share, but we treasure our strengthening links to service providers, health groups, DHBs, and support organisations that also support family carers.
Since writing this early Carers NZ article, Dorothy McCaw has also passed away. Rest in peace Dot, we will always remember and celebrate your lifetime of community service.
