Caregiving readiness

What to expect, how to manage and where to find help as a loved one ages

Following their retirement and a move more than 1,000 kilometres away from family, Mom and Dad seemed to be managing quite well independently, despite Mom’s Parkinson’s disease. And then issues began to pile up.

Mom was diagnosed with leukemia; Dad was showing signs of early Alzheimer’s disease. Realizing that we needed to play a more substantial role in our parents’ care, my sisters and I encouraged Mom and Dad to return home, where we were able to move them into a staffed seniors apartment. It was at this point that our caregiving began in earnest, with many unforeseen responsibilities that we realized we were not prepared for.

Plan for the unexpected

Being ill-prepared is common for prospective and new family caregivers, explains Barb MacLean, executive director of Family Caregivers of British Columbia: “We’re busy, and it doesn’t feel important in the moment. It’s just human nature to take action [only] when a crisis comes along.”

The changing dynamic also is to blame, says Carole Ann Alloway, a retired human resources manager, human rights specialist and mediator who has been a caregiver for her husband since 2009. She notes, “The family is suggesting what the parents need but aren’t doing/getting, [instead of ] parents guiding children. That’s a new role for both child and parent.”

Family caregivers tend to overlook the countless hours required, says Alloway, who adds, “I don’t think anyone is prepared for the time it takes to care for an aging parent. Not just physically visiting, driving to appointments, taking them shopping, but also juggling appointments, coordinating health care specialists, organizing medications, researching for appropriate home care, learning about their specific health concerns and being an advocate to get the care they deserve.”

There are additional strains on caregivers. Family members who prioritize a loved one’s needs often ignore their own. “Many caregivers put aside their own medical and dental appointments, fitness and leisure activities, and social connections,” says MacLean. “With extra expenses, reduced work hours or quitting work altogether, caregiving also has a financial downside.” Rising stress, guilt, depression, insomnia, exhaustion, reduced concentration and damaged relationships are among the many other possible results experienced by family caregivers.

A helping hand

Having more hands on deck helps greatly with increasing work. Siblings are usually the first choice, says MacLean: “You can organize and assign tasks and responsibilities, offer mutual emotional support and problem-solve together. On the flip side, you have to work at good communication together. Some siblings have a lot of conflict, or they just aren’t interested, so that can add more stress.”

Open communication helps, as does outside support. Alloway suggests, “Giving parents options and having an exchange of ideas will help to keep the relationship intact. Rethink how you speak with your parents. Is it still a parent-child relationship? How can you move to adult-adult conversations? Pack your patience.”

To best accomplish this, remember that your parents may be fighting their own decline and wanting to keep their prized independence. I found that offering to do something for Mom and Dad’s convenience, involving them with decisions, respecting their wishes, encouraging them to do what they still could and sharing my own concerns about a situation (which couldn’t be argued) were mature and effective approaches.

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