Creative spirit faces test of caregiving

They are invisible people. “They” meaning the unpaid caregivers of our society, about one million Canadians who have put their lives on hold to care for a family member who is chronically ill — possibly a child, a spouse or a parent.

According to the Alberta Caregivers Association (ACA), about one-third of caregivers earn less than $25,000 and about 46 per cent are estimated to be clinically depressed. It is a silent crisis and little is being done to lighten the load.

However, the ACA plans to illuminate this crisis with Heal Thyself, a one-hour production developed by Toronto’s Imagiscape Theatre showing at Royal Alberta Museum this coming Saturday.

Directed by alternative-theatre veteran Dennis Hassell with original music by Peter Jarvis, this two-actor production explores heartbreaking scenes borrowed from real home situations.

Carlynn Reed originally founded Imagiscape Theatre. In 2004, actor Jonathon Neville was working on a project with Reed. While rehearsing a fight scene, it triggered memories of a disagreement he’d had with his mother, Christine, an Alzheimer’s’ patient. The two actors shared confidences and Neville learned that Reed’s son, Kirk, suffered from a mysterious crippling pain disorder that kept him bedridden for 14 years.

“We realized we wanted to do something in theatre to transform our own lives. We went through our own explorations as a way to help others navigate their own caregiving experiences,” explains Neville.

They researched various medical journals and interviewed eight caregiving families. While the four main characters are Neville and Christine, Reed and Kirk, vignettes from the other families are interwoven for texture and dimension.

During rehearsals Christine was a script prompter and Kirk, a lover of music, was invited to sing a simple song. Then a miracle happened.

The 96-pound (44 kilograms) Kirk, who could only sit up for a few minutes, started gaining weight and body strength. Just the other day he was out of the house for a three-hour event.

“Instead of treating him as if he needed to be fixed, we accepted him as he is. We had fun and in doing that, gave him the will to live.”

Neville acknowledges that the caregiver/care-receiver relationship is fraught with tension. His own relationship with Christine has changed.

“The Alzheimer’s is worse, but our life is full of play, ease and love — more than before. It gave us a reference point to explore and not make assumptions.”