A hospice of hope was her promise to her dying child
Six years ago, Tersia Burger vowed that no one would suffer as her daughter did and opened Stepping Stone hospice
Eighteen days after Tersia Burger started a hospice in Alberton, south of Johannesburg, her daughter Vicky died.
Today she still runs the Stepping Stone hospice, respecting one of her daughter’s last wishes. In November 2012, after meeting a hospice nurse who freed her from a lifetime of pain, Vicky begged her mother to start her own hospice.
“I promised Vicky nobody will suffer like she did,” says Burger.
The former saleswoman started the Alberton hospice on January 1 2013, and on January 18, Vicky, aged 38, died. Burger continued running the hospice, for the first year keeping it afloat with her own money.
Her daughter and only child was diagnosed at birth with a rare disease, called osteogenesis imperfecta, or brittle bone disease.Mom and daughter themselves first encountered a hospice nurse five months before Vicky died. The nurse put them in contact with a doctor specialising in pain management, and he created a port to drip morphine into Vicky’s chest.
The next day, Vicky got out of bed, managing to walk again for the first time in months. She spent the last months of her life pain free.
Before that treatment, Vicky had reached a low point. She had had 81 operations in 10 years, her husband had left her, and she was suffering from excruciating abdominal pain.
She called a family meeting and told her mom and two sons: “You have to promise ... no more operations, no more hospital. You have to let my body cease.”
Initially, Vicky’s story surprised doctors who did not expect her to live beyond the age of three. At 21, she got married and had a child, but the pregnancy placed strain on her body. A year later, she became pregnant again.
Burger said she was furious with her daughter: “I was so, so angry. I knew her body could not cope.”Her back took strain and started to crumble; and so many years of surgery and pain followed.
But Vicky’s children brought her joy, says Burger. She never allowed her two sons to see her in her pyjamas. She would stay in bed while they were at school, but get dressed, comb her hair and put on makeup just before they came home.
“She fought to live for 10 years. She was a wonderful mother.
“She would message me on the phone from her room, crying in pain. But later, when the boys went inside to say good night, you would hear peals of laughter.”
Since Vicky has been gone, the Stepping Stones hospice, which still employs the nurse who first helped Vicky, has been able to help many patients and their families through their last days.
“I miss her every day. I miss her with every fibre of my being. She was my only child,” says Burger.But she is also pragmatic about death.
“Death is part of life, just like giving birth. No matter how painful giving birth is, a pregnant woman has to do it ... I don’t fear death at all. It is a natural process.”
Her hospice, which now runs on charitable donations, exists to make patients’ last days or weeks dignified, bearable and pain free. It has helped 1,200 people live and then die well.
“We are pain specialists,” says Burger, referring to her nursing staff. Using morphine correctly, a cancer patient’s pain can be made to disappear – and the nurses can ensure they do not feel groggy.Outside her hospice is a memorial garden that families can visit to remember their loved ones.
On a tree trunk is a picture of a pretty blonde girl, who died of cancer in her early twenties. In her final days, she asked Burger what death would be like.
Burger told her: “You will have less and less oxygen and then you will feel sleepy and as you get more tired, you will fall asleep.”
Burger laughingly remembers her response: “How they fuck do you know?” she said. “You haven’t died.”She also remembers the 91-year-man who told his wife of 60 years, suffering from Alzheimer’s disease: “It’s okay to go.”
But first he asked her: “Can we have one last dance?”
“She moaned: ‘No.’ He replied: ‘Soon we will soon be able to dance together in heaven’.”
Burger says she still mourns her own loss when she stands at some of her patients’ death beds.
But she also draws inspiration from respecting her own daughter’s dying wish.
On Thursday night, a wedding ceremony took place at the hospice.
The bride’s father had already died, but she wanted to be close to him for her wedding, so the ceremony happened where he took his last breath.
Burger summarises it simply: “Our hospice is a story of hope.”