Caring for caregivers

Judy Hierlihy has been the primary caregiver to another person twice in her life.

For 10 years she looked after her mother, acted as her advocate and co-ordinated her care. More recently she did the same thing for her husband, who suffered from severe depression for four years.

Even though Hierlihy was an experienced nurse, nothing could prepare her for the role of taking care of someone she knew and loved.

"It's very different when it becomes you," she says. "Even if you have all the knowledge and the understanding … when you're doing that journey yourself, you don't ever expect your spouse to not be the person you knew and loved."

"You're not really prepared to become the mother of your mother."

Hierlihy is just one of eight million Canadians navigating the complex caregiving system – seeking out emotional support as well as co-ordinating doctors appointments, home-care arrangements, facility living options and respite hours.

Caregiving compass

At some point in their lives, nearly half (46 per cent) of Canadians aged 15 and older have provided care to a family member or friend with a long-term health condition, disability or aging needs, found a 2012 survey by Statistics Canada.

Among those caregivers, about half cared for their own parents or in-laws in the past year.

Anna Mann, executive director of the Alberta Caregivers Association, says caregiving is an issue that has emerged in recent decades.

The oldest caregiver-focused advocacy and support organizations in Canada have only been around since the late 1980s , she says. The Alberta Caregivers Association has only been active during the past five years.

Caregiver burnout – the physical and emotional depletion a person experiences from caring for another person, as defined by Alberta Health Services – has only come to the forefront of research and policy-making in the last decade, if that, she says.

One of the problems in dealing with burnout is getting caregivers to recognize it early on.

"Most people don't think of themselves as caregivers. When they come to us they are often stressed, in crisis and have hit a point where they can't keep doing what they're doing," says Mann.

Hierlihy joined a support group to find people that could empathize with her emotional journey.

From there she became the lead organizer and facilitator of COMPASS for the Caregiver workshop at the St. Albert 50+ Club, a nine-week program that is coming back for its third session at the end of the month.

The group has met once a week to discuss caregiver self-care, knowing your capacity and gaining the confidence to ask for help.

How to find help and navigate the health-care system is one of the most popular sessions, says Tara Burnett, outreach co-ordinator for the 50+ Club.

"People don't always realize what is out there to help them through this – there is respite care, home care – I don't think that can be repeated enough," she notes.

Hierlihy says many people don't realize they can ask for home care themselves, they don't need a referral from the doctor to get an assessment.

She says there is lots of help available locally.

A new four-part education workshop called Confidence for Caring for caregivers of people with Alzheimer's disease and dementia, wrapped up last month with a resounding turnout, say organizers from the St. Albert and Sturgeon Primary Care Network.

Support programs are also available through the caregivers association, and respite through home care and several local private agencies including Home Instead Senior Care and Comfort Keepers.

Home until the end

For many caregivers, their first point of contact with the health-care system is their family doctor.

Supporting family caregivers is integral to the health and well-being of patients, says Dr. Krista Bennett of the St. Albert Medical Clinic.

"If we can prevent or at least delay caregiver burnout then those people (who) are sick are going to be able to stay in their own (home) for longer," she says.

"We're trying to move people from home to facility but what is happening right now is people are going from home to the hospital and then to their facility, which isn't ideal."

Health-care professionals are striving to make diagnoses earlier and provide support in the home so people can live independently for as long as possible, she explains.

Depending on the patient, Bennett may refer families to home care or the primary network seniors nurse to do further assessments and referrals.

There are day programs available at the 50-plus club (for the non-medically fragile) and the Sturgeon Community Hospital (for dementia and rehab patients, referral-only).

"What we have is good, but there's not enough of it," remarks Bennett. "We have a fantastic day program but if you can't get into it then it's not helping you."

The wait list for the day program at the Sturgeon is from six months to one year.

Long wait lists for day programs and strict eligibility requirements is a challenge for many caregivers, says Mann, which means "sometimes that means people with the highest needs aren't able to access them."

Last month Alberta Health Services announced that provincial day programs would be expanded to take in an additional 500 seniors in the Edmonton and Calgary areas. The agency committed to investing $9 million over the next three years to expand hours for existing adult day programs and launch new ones.

Hierlihy says although there are gaps in the system, a lot of good things are happening with respect to caregivers in the province.

She says families also need to do their part and speak up for themselves and not be afraid to ask for what they need.

"Some people are very intimidated by the health-care system, so they're not going to phone (for help) they're going to wait for the doctor (to do it). When I was a caregiver to my mom, I was on the phone, I was following through."

"We need to take responsibility for being the navigators ourselves."