After three days and three nights of giving her dying daughter palliative care, Cindy Sweet caved.
After caring for her medically fragile 15-year-old daughter, Natalie, who had severe epileptic seizures caused by an undiagnosed neurological disorder, Sweet finally admitted defeat and called the hospital.
“We couldn’t get the nursing support I needed, so I had to call the doctor and tell him ‘I can’t do this anymore. I need help’,” Sweet said.
Her fear of admitting her daughter Natalie to a hospital was the sterile environment, she said.
“I didn’t want that for her last few days,” she said. “Everyone deserves a peaceful, dignified ending.”
Like dozens of children each year, Natalie spent her last three weeks at Emily’s House, a palliative care facility for dying children in Toronto.
“Until death knocks on your door, you never think about it,” Sweet said. “We needed a place we could depend on to take care of all her (medical) needs. They were just wonderful. But it was very challenging, very hard to be down there without family around.”
Sweet has lent her name and daughter’s story to Hospice Simcoe, which has announced it will be opening children’s palliative care beds next week.
Area health community officials estimate approximately nine children die after a life-threatening illness each year in Simcoe County.
Hospice Simcoe plans to offer 24-hour end-of-life nursing care, paediatric visiting palliative care in family’s homes, and grief and bereavement services in the future.
“Although the number of childhood deaths each year may be smaller than adults, the emotional, social and financial impact is extraordinary,” said Kelly Hubbard, residential care manager at Hospice Simcoe.
“A child’s death is a painful, sorrowful loss for parents, siblings, extended family members, friends, teachers, care givers, volunteers and others. During the dying journey, children and their families suffer from reduced quality of life and the lack of true choices about where the child dies.”
Hubbard said hospice care will be provided using a team approach including local paediatricians, the North Simcoe Muskoka Community Care Access Centre and on-call support from Toronto’s Hospital for Sick Children.
After several years of consultation, Hospice made the decision to go ahead with paediatric palliative care last fall.
In the interim, it has purchased child-sized equipment and readied rooms for children. She said guests are always encouraged to bring in photos and favourite items to decorate their rooms, and the childrens’ rooms will be no different.
“We can’t decorate each room. A room for a three-year-old girl would be very different from what a 15-year-old boy would want,” she said.
Sweet remembers the plaques she and Natalie made of their hands, and a photographer who took their final family photograph at Emily’s house last October.
“They’re very meaningful,” Sweet said. “We have lots of memories to cherish. Emily’s staff did everything medical and all we had to do was just love her.”
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