When the care available is insufficient

Natasha Holland natasha.holland@stuff.co.nz

Che Baker che.baker@stuff.co.nz

robyn.edie@stuff.co.nz

Debbie Jamieson debbie.jamieson@stuff.co.nz

03 211 1111 news@stl.co.nz

my.stuff.co.nz 0800 339 100 subscribers@stuff.co.nz

Jacqui McKinney

027 807 3163 jacqui.mckinney@stuff.co.nz

0800 287 322 familynotices@stuff.co.nz

0800 835 323 southlandclassifieds@stuff.co.nz

8.30am-5pm, Mon-Fri

03 211 1130

ASB House, 46 Deveron St, Invercargill

Alexandra

03 440 0101 Gore 03 209 0108 Queenstown 03 441 0690

Ispent the weekend with a friend who can no longer move his own body. I helped feed him through a tube in his stomach, learned to use the hoist to transport him from bed to wheelchair, and scratched his head/nose/foot when needed. He is 50 years old.

His insightful mind and quirky wit are very much intact; motor neurone disease has not affected his brain. It is one of the cruellest of diseases.

His care is an enormous and constant task. Think of yourself on a rainy Sunday at home with no place to be or chores to do. In your un-busyness, you will eat, clean yourself to some degree, tap on your phone, use the toilet, and look at a larger screen for a while. Without thinking, you will use your fingers, rise to your feet, turn your head, raise an arm, and unconsciously employ every muscle in your body.

None of those movements are possible for people with advanced motor neurone disease. Immobility means all these small movements must be performed by someone else. That someone else is usually a family member, since publiclyfunded caregiving provides only for daily personal care such as showering and toileting.

It was hard work. Constantly vigilant, waiting for my friend’s call button to alert us to another small, new need. Sometimes it was as simple as adjusting his foot on the wheelchair’s footrest or giving him a drink. Other times it was to say he wanted to go to bed or get out of it, sparking a 30-minute exercise in transferring his tall, dead-weighted frame.

Given the workload his disease creates, it is no surprise that the amount of professional caregiving is grossly insufficient to meet the needs of my friend and his young family. His partner, who still works part-time, is stretched and stressed. In the vast attention paid to his physical needs, there is little time or energy for his family’s intellectual, emotional, or social needs.

As terrible as this situation is, we are some of the lucky ones. We are the middle class, with access to resources, relationships, and skills that will argue for better care, raise private funds, mobilise our communities of support, and articulate the problems and possible solutions to people with emotional support, and modern the power that can make a pacemakers. difference to my friend’s plight. Perhaps the principles of

What about all the others? The effectiveness of interventions and ones whose local communities and care for the wider family in our wha¯ nau have long since passed, healthcare system don’t hold up so whose chronic deprivation means well at the other end of life. My that their long-term illness is yet immobile friend receives under 30 another layer of significant setback hours of in-home care each week, in their lives? What about the ones which is not enough time to deliver without the skills to make their on his most basic needs. The rest of case for a better deal, or who are his life, his partner, parents, confused by or scared of a friends, and wha¯ nau must provide healthcare system that is as tangled care for which they are not as a knotted feeding tube? properly trained, and that he does Seeing how the system is falling not want them to have to give.

A flat for my own educated, assertive, s I poured liquid nutrition and moderately-resourced friend, into a syringe connected how can we expect the end-of-life to his stomach, I healthcare system to work for the wondered about the other chronically disadvantaged? people out there with similar and

I have previously published unmet needs. I imagined the many pieces praising New Zealand’s other sufferers of debilitating healthcare system, arguing that, in conditions like motor neurone spite of its broken bits that are disease who are not receiving the widely publicised, our public care they require, but who don’t health institutions are remarkably have the skills or relationships to functional. Indeed, it has kept all address those insufficiencies three of my children alive despite themselves. This seemed like a sad childhood cancer and acquired juxtaposition to the high quality of heart defects. paediatric services my family has

Paediatric services across the benefited from – more than you can country, which our family uses imagine. regularly, have been superb, From a health-funding effective, and concerned with our perspective, could it be that the wider family’s needs rather than beginning of life has a greater value focusing solely on the child-patient. than its end? It’s time for district Our family’s collective medical bill health boards and central over 20 years of paediatric services government to muscle-up on inhome has certainly surpassed $3 million care for those affected by of specialist care and surgeries, mobility as part of their palliative pharmaceuticals, housing, care.