These days, everyone has a story about caring for an elderly family member. From waiting with Dad at the doctor’s office, to staying overnight to administer Mom’s medication, to visiting your spouse at the long-term care home, the spectrum of care is broad. Elder care is posing mounting pressure on family caregivers, who are contributing billions of dollars worth of unpaid care each year.
People are burning out from taking care of a sick or elderly family member, says Dr. Mark Frankel, president and CEO of Taking Care Inc., an organization dedicated to helping caregivers navigate the elder-care system. Its self-service website and call centre receive a combined 20,000 to 30,000 inquiries annually. “We get most calls from family members carrying the load, caring for a parent or spouse,” says Frankel. “They’re frustrated, exhausted and stretched, and they need support.”
Going into long-term care is not an isolated event; it is usually a gradual process with many stops and bumps along the way. As people age, they may experience chronic health problems resulting in a variety of functional challenges or disabilities. They and their family caregivers shift from one strategy to another, coping with what can be a trying experience. As the stages of care progress, the choices and sources for that care become more complex, and often more expensive.
To help families understand and be better prepared for the main needs and issues along the long-term care continuum, Frankel has developed the following five-stage framework:
Seniors are still self-sufficient and able to manage chronic health problems and disabilities. Usually they don’t require or even accept special support from family members, preferring to be as independent as possible.
Independence turns to interdependence. Seniors begin accepting care from family members with cooking, house cleaning, shopping and banking, but are reluctant to accept formal care just yet. “Seniors often see formal caregivers as a beginning in the decline in their independence,” Frankel explains. During this stage, Frankel often advises families to begin considering seniors’ residences designed for independent living, which feature 24-hour security, suites, meal plans, cleaning services and laundry.
Seniors become more dependent on others for practical chores such as meal preparation, cleaning, shopping and transportation. They may also begin to need some limited direct help or stand-by assistance with personal care items such as dressing, bathing and grooming. There are a wide variety of care options; live-in and live-out personal support workers provide one-to-one care. Assisted living or retirement homes become options if both personal care and social activities, such as group dining or recreation programs, are desired.
The responsibility for providing care at home can send some families into an exhausting spiral of crisis management. “Families call us saying they went to Mom’s fridge and all the food was rotten, or Dad’s been leaving the stove on,” says Frankel. “The health and personal care needs of a senior can outstrip the family’s capacity to help. Formal home care may be insufficient or too expensive and the family goes from crisis to crisis.”
Frankel’s final stage of long-term care occurs when families are forced to admit their elder family member into a nursing home. Skilled nursing care and extensive personal care help the senior continue to live with dignity and allow the family to continue providing social and emotional support, while still tending to their own responsibilities.
Whatever the care, the funding is all on you, Frankel warns. Long-term care homes are not part of the Canada Health Act and government-subsidized care is very limited. “Everyone is discovering that the hard way,” he says, adding that families unprepared financially to cover costs of assisted living homes often end up bearing the responsibility of care at home.
Understanding Frankel’s stages of aging has become particularly important as Canadians live longer than ever before. They reinforce why planning for retirement requires both important lifestyle and life stage choices.
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