Glenn Turnbull contracted encephalitis as a toddler, which left him severely disabled. His mother, Moira, who has been caring for him ever since, was recently awarded the Continence Foundation of Australia’s 2016 Carer of the Year. Moira shares her story with Maria Whitmore.
Moira Turnbull, 73, doesn’t seem the sort of person to get easily annoyed. When she speaks about caring for her 44 year-old son, Glenn, her voice is calm, steady and comforting. She gives the impression she can weather any storm, and make everyone in her reach feel safe while it’s raging outside.
But her calm demeanour belies the turmoil Moira has experienced in recent years, while managing her family and passionately advocating for her son’s health and wellbeing.
Glenn suffers from cerebral palsy, which he developed after contracting encephalitis at 19 months of age.
“He was a bouncing ball of muscle, running around, talking the way 19-month-olds talk,” Moira said. “And then he got a virus.”
The change in her toddler, when he came out of his coma, was dramatic.
“He was like a newborn. The doctor’s didn’t expect him to live,” Moira said.
Glenn has no speech, is confined to a wheelchair, and is further incapacitated by strong muscle spasms in his body and jaw.
He cannot feed himself and needs help with his bladder and bowel control. Incontinence pads, uridomes, leg bags, laxatives and enemas are all part of his toileting regime.
Glenn’s intellect, however, is unaffected, and he communicates through gestures and a communication board.
But Moira said Glenn’s normally bright and happy disposition changed 18 months ago, after an upsetting incident during a period when he was living in a group home for disabled adults.
After suffering from intense chest and stomach pain, Glenn was taken to hospital in an ambulance, unaccompanied. His mother was not notified until the next morning.
“He had a chest X-ray, an ECG and a lumbar puncture, all on his own. He has no speech; they would have had no way of knowing what was wrong, and he would have had no way of telling them,” Moira said.
“Since then he’s anxious, miserable, depressed; he’s a different person.”
Moria said the decision to put Glenn into a group home in 2013 was supposed to make things easier for her. Glenn’s younger siblings, Gavin and Hayley, were concerned about their mother’s welfare, particularly as she was now also caring for her husband, Rob, who had been diagnosed with motor neurone disease three years earlier.
“Everyone was saying, ‘you can’t keep on looking after Glenn; you’re getting too old now’,” Moira said.
A vacancy in a highly-sought after group home became available and Moira reluctantly agreed to relinquish the day-to-day care of her son.
Moira said she has never experienced as much stress as she did during the next two years. According to Moira, while in the group home, Glenn developed bowel and mouth ulcers, severe headaches and was regularly hospitalised to treat reflux and an impacted bowel. The last straw, she said, was the life-threatening septicaemia resulting from an impacted bowel about a year ago, after which Glenn returned home to the full-time care of his mother.
Moira said Glenn had never been in hospital prior to his leaving home, with constipation about the only health issue he had experienced. “But we always managed it,” she said.
A colonoscopy and endoscopy performed earlier this year revealed a hiatus hernia (when the stomach protrudes through the oesophagus) and an inguinal hernia (when the intestine protrudes through the abdominal wall).
“The doctors said his colon is like a balloon, and they doubt it will ever come back to how it was. He also keeps getting pockets of air and gas in his bowel, which they have to let out via a tube through his bottom,” she said.
This combination of symptoms, particularly the build-up of gas in his bowel, is the cause of much of Glenn’s acute pain.
“In the past 12 months I can count on one hand the number of nights I’ve slept through,” Moira said. “He has spasms in his legs, and the pain in his stomach sets off more spasms. His mouth spasms too, and the noise (from the spasms) is really getting bad.”
Glenn has had several hospital admissions in the last 18 months. Moira said her initial requests for a colonoscopy or endoscopy to investigate the cause of his pain was met with resistance.
“They seem to say, ‘oh, it’s just CP’ (cerebral palsy),” she said. “One doctor said, ‘if we found anything, would we do anything?”
In frustration, Moira put photos of Glenn before he became unwell around his hospital room in the hope the medical staff would see him as she did; a much–loved young man with feelings, emotions, hopes and aspirations.
“He used to do drama, and had performed in the Opera House with his drama group Can You See Me. I wanted them to know,” she said.
It was a neurologist who insisted on the tests that revealed the extent of his bowel’s damage.
Even though Glenn is “still not himself”, he has recently returned to his day program, allowing Moira to spend more time with her husband, who moved to permanent residential care in March this year.
Moira said she still felt guilty about relinquishing her husband’s care. “I was managing; I could get Rob up and out of bed and he could turn to sit, but one day I couldn’t anymore.”
Asked if she ever felt she had been dealt a cruel hand, she admits to feeling sorry for herself on one occasion.
“I was going round and round in circles with the two of them, and I said, not ‘why me?’, but ‘give me a break!” she said, laughing at the memory.
Rather than contemplate her lot, she compares it with those of others who are worse off - her husband for example.
“Motor neurone disease is a cruel, cruel disease. You just know you’re going to get worse. Every little change and ... that’s it ... that’s where it’s going next.
“Rob can raise his head slightly, but now he is losing the use of his tongue,” Moira said, her voice faltering.
While resigned to the inevitable fate that awaits her husband, Moira said she intends to keep fighting for her son’s rights while she knows there is much that can be done to restore his health and, more importantly, his peace of mind.
All she wants, she says, is “the old Glenn back”, an often repeated lament during our conversation. And on that note, she says goodbye and leaves to check in on her son.
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