Changes in negotiating or advocating for care are related to supporting your family member in a care facility.

Examples:

• Talking and working with personal support workers, nurses, facility staff, and doctors
• Getting support from family and friends
• Learning to let others care for your family member, including cooking and food choices, bathing and exercise

Examples from others who have experienced these changes:

“It’s still—it’s a difficult transition, ‘cause you feel like you’ve lost control.”

“I really didn’t know where to go to find information. It seemed like a big void out there, and maybe I was too emotionally involved to comprehend or understand.”

“Communication within the medical community; it’s a power play.”

“It’s been a tough journey.”

“Everybody just disappeared. Friends disappeared.”

“You know he’s safe. That’s all you want: you want somebody to be safe and hopefully not distressed.”