Moving some into long-term care is never an easy transition. Care partners feel many emotions when a family member moves into a long-term care home. Some are relieved to share the care while others feel guilty, especially if promises were unkept.

“My valiant hopes around looking after him at home forever were dashed, and I watched in fascination and some horror as others stepped in to take over my role as his caregiver,” said Susan Bithrey, wife and care partner of her husband Reg, who has dementia.

But Susan learned quickly that her role in care didn’t end with the move, “As his Substitute Decision Maker, Ontario law gives me the right to question many of the calls made by the professionals whose job it is to care for Reg, such as  medications, hygiene regimens, and hospitalization  procedures in the event of serious illnesses, and it makes my head spin. It’s a huge responsibility, with accompanying stress levels,” Susan recalls.

When the move occurs, some caregivers no longer know what role to play. But you have not lost your role; you are sharing the responsibility of care with others.

As a partner in care with the staff, your role is to inform, advise, recommend and encourage the best quality care for your family member. Here are some ways to get started with your new role:

• Get to know the staff and maintain regular contact
• Find out about daily routines, programs and services. Obtain a calendar of activities and participate when you can.
• Attend care conferences, which occur six weeks after admission and then annually.
• Have realistic expectations. Differences from the care you gave are inevitable.
• Help develop the plan of care, which lays out a strategy for the resident’s needs.
• Day to day notes or a communication book in the room can ensure important information is passed on to the staff on all three shifts.
• Participate in the Family Council where the day to day running of the home is discussed.

This information comes from shifting focus, a new resource developed by the Alzheimer Society of Ontario and the Alzheimer Knowledge Exchange. It helps families and friends of people with dementia deal with difficult dementia behaviour and other issues related to caregiving and long-term care homes. To download the guide, visit www.shiftingfocus.ca

Susan Bithrey

Care partner, Champion for Dementia