When Bruce McKelvie fell unexpectedly on his grandson’s second birthday, life changed. Catastrophically, and irreparably.
“There was a big loud crash and there was Bruce with blood all over his face, his glasses had smashed,” said his wife, Jennie.
They noticed a week later that the muscles in his forearms were writhing under the skin, wriggling like worms, yet Bruce wasn’t doing anything to make them move. They found out later that this phenomenon is fasciculations, involuntary muscle contractions that can’t be controlled.
It seemed odd, so they began a chain of medical investigation that ended in the McKelvies being told Bruce had Motor Neurone Disease. This is a condition where cells in the brain and nerves called motor neurones progressively stop working. Typical early symptoms include weakness in the legs and hand grip, slurred speech and muscle cramps and twitches. Every person reacts differently; the physicist Stephen Hawking was diagnosed with motor neurone disease in his 20s, and lived with it for 55 years.
Bruce was not to be so lucky. He was diagnosed on December 1, 2021, and progression was very rapid. He died 11 months later, having lost his voice and control of his muscles. He couldn’t swallow food.
There was a period where his right middle finger became all-important; it was his communication tool. He could tap messages on a tablet with that finger, and voice software would speak that message.
“By the end of August, he’d lost that.” Jennie was very quiet. “He’d lost most things by then.”
Jennie, formerly a physics tutor at Massey University, approached Bruce’s condition with scientific method and vigour. Any possible idea that might help Bruce, and help her to help Bruce, was instigated.
“It was obvious Bruce was going to need more care than I could give him. By August he couldn’t get off the bed.”
So how did she manage? Bruce, a former farmer, was about six feet tall, and a strapping 90 kilos when MND was diagnosed. Jennie by comparison is a dainty wee thing, 50-something kilos.
The answer was equipment and helpers. After his diagnosis, a Palmerston North Hospital multidisciplinary team supported the family with expertise and regular meetings with a physiotherapist, neurologist, dietician and occupational therapists, who organised all the equipment. They provided hoists, a commode chair and a wheelchair that was the right size for Bruce. The TalkLink Trust helped Bruce to continue to communicate.
The Arohanui Hospice became involved in May. Jennie said once the hospice was involved, and Supportlinks had assessed Bruce’s condition, a new team swung into action. Carers came to shower Bruce each day. The Hospice also helped arrange respite care and weekly trips to the Hospice’s Day Stay Programme.
“It made such a difference,” Jennie said. “I could not have done it without the whole team in the background, knowing what I didn’t, knowing what we needed. It was seamless, the equipment and help arrived when we needed it, nothing was too much trouble.”
Which is not to say life was easy. Jennie kept a record of Bruce’s last year, and said the worst part for her was being constantly woken at night.
“He’d wake three or four times a night. He needed help, or he couldn’t sleep… so I suppose grumpy attention from me was better than no attention.” She grinned. “I had a week of respite care in August and I slept. I slept and slept.”
Their son James and daughter Sarah and their families, and lots of friends, provided constant support for Bruce and Jennie, helping to feed Bruce, taking him for walks and drives, entertaining him and involving him in their lives. Jennie said watching television sport was solace as the disease progressed; Bruce had been a great sportsman, playing polo, rugby, golf, cricket, indoor cricket… he loved sport.
Bruce lost his walking in August, and that vital middle finger stopped working. The really hard yards had begun. Jennie said that even with equipment, her neck and shoulders were in constant discomfort because of the heavy work.
They communicated using speech therapy cards; very low tech but so effective. “I’d hold the card up and point to the letters to find out what he wanted, and he’d nod. I got very good at anticipating the words!”
Motor Neurone Disease is a one-way street. There’s no miracle cure, no turning back, just a cruel, continual disintegration of the brain’s ability to control the body. Bruce and Jennie knew nothing could be done except try to alleviate suffering as the disease progressed, so early in the progression they’d discussed it and Bruce had decided to have an assisted death.
Assisted dying is relatively new in New Zealand, and has a lot of rules. Two doctors must assess the person, they must have a condition with no future and be facing a rapid decline. It must be the person’s decision; nobody else can influence this.
In June, Bruce asked Jennie to put the assisted death process into motion. There were more assessments, to make sure it was what Bruce wanted, and a date of January 14, 2023, was decided upon.
“In the end, the disease progressed so fast that Bruce changed the date to late October, 2022. We had a party on the Saturday, a really special party to celebrate Bruce’s life. Lots of friends left in tears,” Jennie said. “Then next day, the doctor came up from Wellington, and checked it was still what Bruce wanted, and I was with him. I held his hand. Our children and grandchildren were nearby.”
Jennie says she knows there is controversy about assisted dying, and for a while she was very careful about who she told. But she was proud to support Bruce in his decision, because he was able to die with dignity and on his own terms.
“Now I think it should be talked about. It’s a new conversation and we have to have it.”
Arohanui Hospice has a neutral stance on assisted dying, focussing instead on providing specialist palliative care. Hospice staff do not complete assisted dying assessment nor complete assisted dying deaths. The Hospice is committed to ensuring people under its care receive the best possible end-of-life care and support, whatever the person might choose. “Dealing with something like this, you are in a state of shock and it is uncharted territory.” Jennie said. “But you just have to keep on going, day after day. That’s where the Hospice was fabulous, everyone understood what we were going through and the right help just kept on happening.
“Nothing was too much trouble.”
