Changes in negotiating/advocating for care are related to the continuous need to find the supports you need to help care for the person you are caring for.

Examples:

• Getting help from family
• Hiring help
• Finding and using community services
• Talking and working with nurses and doctors
• Getting the information you need
• Learning new skills

Examples from others who have experienced these changes:

“I had to spend considerable time with the many caregivers (who were good for the most part) in helping them get to know her needs, likes, dislikes, etc.”

“Caregiving is a task for which no-one can ever be prepared – the journey takes many turns – I finally [discovered] respite which is most required: Respite was my salvation.”

“Hired a friend to sit with my mother, so I could get out of home for a couple or three hours, once or twice a week, to work or to exercise or to spend time with myself. Also, Mom went to day program twice a week, set up by home care, homecare nurse is an awesome woman.”

“I’ve tried to learn everything I can about the diseases that affected my parents… I’ve attended support groups.”