Building Networks for a 'Good Life,' Even After the Caregiver Is Gone

This article is so on target it's not funny. A must read.

Twenty-five years ago, when Ted Kuntz, a family therapist in Vancouver, British Columbia, was preparing his will, he went around to family members and close friends asking if — in the event of his and his wife’s death — they would be willing to serve as a guardian for their son Josh, now 28, who has a severe cognitive disability and requires continual care. “Everybody said no,” recalled Kuntz. “They said the responsibility was too overwhelming, and they couldn’t imagine taking it on.”

Ted Kuntz, left, and his son, Josh.

As a young boy, Josh had frequent uncontrollable seizures. Life grew increasingly stressful, Kuntz recalled, and the family became isolated. “We were in crisis,” he said. “My wife quit her job and became a full-time caregiver for Josh. We were holding our breath constantly; people avoided us because we were angry; our family got worn out by the level of despair and pain we were feeling.”