Helen Ries was in her forties when her father died in 2011, and then her mother in 2014, a turn of events that left her as the main caregiver for her brother Paul Knoll, who has Down syndrome.
Ms. Ries moved her brother, who is now 50, into the Ottawa home she shares with her husband. Since then, she has supported her sibling through a depression that arose following their parents’ deaths. She has been there, too, through his cervical spinal surgery and numerous other medical crises.
Today, Ms. Ries manages 14 additional people to aid Mr. Knoll. Personal support workers help him get ready in the morning and assist him at bedtime, while other care providers fill his days with art classes, library visits and aquafit workouts. Although Ms. Ries must co-ordinate this small army of help – and pays for some of it out of pocket – she knows without it she wouldn’t manage.
When people suggest caregiving may simply be her “birthright,” she bristles. There wasn’t really another option: Given Mr. Knoll had spent his entire life in their local community, the family was unwilling to put him in a group home or long-term care – where spots are limited anyway, Ms. Ries said.
To tactfully broach conversations about a loved one’s physical and mental health, experts recommend affirming their autonomy, validating their...