Care at home for terminally ill Calgary girl overwhelming

CALGARY — Illisha and Ian Patterson can barely recall parts of the painful and exhausting fog they moved through two years ago, when they first tried caring for their terminally ill daughter Cassandra from home.

Gripped with grief and fear over her rare genetic disorder, they would face up to 70 seizures over four days, constantly running to help and stabilize their daughter.

Illisha had to call the neighbours just so she could use the washroom. Ian would help between shifts at work, tending to Cassandra at all hours of the evening and overnight.

“I was always moving, getting oxygen, suction, water, oxygen, suction, water,” says Illisha.

“I don’t remember much, it’s a blur,” adds Ian. “I’m lucky I didn’t crash the truck heading into work every day.”

Slowly, somehow, connecting to other parents in hospital about what to do, the Pattersons secured some help, applied for funding, some care-givers and gained a wealth of their own medical expertise just through day-to-day experience.

Cassandra, now four years old, is seeing more good days than ever, where she’s able to play with her parents, communicate with her hands, even take trips outside.

But the Pattersons’ earlier struggles are becoming more and more common, according to a University of Calgary study released this week, recommending better co-ordination of care and support services for families.

Families with terminally ill children stable enough to be cared for outside of hospital are in critical need of in-home care and out-of-home respite, says the study, authored by Lillian Rallison, a PhD candidate in theUof C’s nursing faculty.

With most of the palliative care being done at home, she says families are frequently overwhelmed by the demands of round-the-clock caregiving and decision-making.

“The illness often stretches over months and sometimes years.It is frustrating and exhausting,” says Rallison. “Additionally, the effects of nurturing the child not only isolate the families from their community, but change their relationships with friends and extended family members.”

Rallison explored the experiences of six families whose children have progressive neurodegenerative illnesses and live at home. In various stages of their illnesses, the children experience periods of relative stability, interspersed with times of medical crisis.

And while spates of support are available through the hospital and the community, Rallison says, accessing them can be like looking for a needle in a haystack, at the same time, parents are spending every waking hour just trying to keep their child alive.

“Because of all of the technological advances, more of these children are able to live at home, which is a choice most families want to make.

“They want their kids at home,” Rallison says.

But while trying to care for them, they don’t get enough support or information in terms of their complex care.

Rallison and the Pattersons say when a child is in hospital, a special care team is assigned to them.

But once they arrive at home, the support is haphazard, particularly on weekends when specialists are unavailable in hospital.

“I often relate our experiences to living underwater, because I feel like I am constantly trying to prevent myself and my family from drowning in the intense emotion and responsibility we deal with 24 hours a day,” Illisha says.

Dr. Sharron Spicer, division chief for pediatric and palliative care at Alberta Children’s Hospital, agrees that more support is needed for families struggling to take care of their children at home. “We need to understand the uncertainty, the joy, the sorrows and the everyday challenges families like the Pattersons experience so that we can better support families through the many months and years of the child’s illness.”

Rallison’s recommendations include raising awareness of a growing population of children and their families within palliative and pediatric services. This includes listening to families and involving them in pro-gram planning, policy development and interdisciplinary education.

Rallison adds that while funding is often available, families still struggle with recruiting, training, and building trusting relationships with their caregivers.

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