It’s called the Caregivers Network of Peel (COPN), a group of dedicated volunteers who work for agencies that serve seniors in this region and who recognize the critical need to support caregivers — those family members and friends who make life bearable for seniors and the frail who can no longer completely look after themselves in their own homes.
Don’t know how the group pronounces its acronym but it would only be appropriate to make it a hard ‘O’ and pronounce COPN as if it was Copin’ which is, after all, what it’s all about.
Copin’ with the realities of a system that puts almost all of its resources into the 20 per cent of caregiving that is formal, and very little into the 80 per cent that is not. While people are waiting, and waiting to get home care through official channels, they often get it through informal ones — from the kids bringing meals over, changing the dressings and doing the laundry — to the neighbours dropping by for a coffee every morning and ensuring everything is as it should be.
On Wednesday, COPN released a report funded through the Ontario Trillium Foundation and developed through the auspices of the Seniors Life Enhancement Centres, including the one at Cliffway Plaza where the report was launched.
The official part of the program focussed on the report’s expected recommendations that informal caregivers need a lot more support to help them cope with the stress of providing a service which, it should not be forgotten, would otherwise fall on the shoulders of the taxpayers.
Formal reports are about charts and assessments and demographics and long-term recommendations while caregiving is about flesh and blood. The organizers did not let us forget about that for a moment.
Shirlea Crook helped her mother look after her step-father when he was given just five years to live. A couple that once thought nothing of taking off for Arizona with a pop-up tent for five weeks was suddenly confined to a tiny, scary world. “Their family home that was once a place of solitude became a place of turmoil” with a parade of social workers, nurses, personal support workers, etc. tromping through, Crook said in providing a caregiver’s personal story to the event.
Both Crook and her mother are nurses, which meant that they probably had an over-optimistic view of their ability to cope with the surgeries, the catheters, the pacemaker, the feeding tubes, the hospital visits etc. etc.
Her mother ended up in the hospital suffering from exhaustion and malnutrition.
Crook enumerated the lessons that should be passed along to anyone who may become an informal caregiver — which probably includes most of the population.
Number one is ask for help. Neighbours and friends want to help, “but they don’t know how to ask.”
Get the neighbourhood kids involved. Pay them $10 to cut the lawn or shovel the driveway.
“You will have feelings of anger, sadness and fear,” said Crook. “Get the resentment off your chest.”
Get a will and get a power of attorney approved so you can look after the person’s affairs if they become incapacitated.
Finally she recommended keeping your own journal and making one for the person you are caring for, to help them cope with their experience and express their feelings (and frustrations, no doubt.)
Pat Spadadora, of Sheridan Institute’s Elder Research Centre, wore two hats — explaining both the findings of the report as its chief researcher and her feelings as a caregiver herself.
Her parents were co-dependent in many ways, her mother providing the eyesight for the couple and her father providing the mobility.
“The system is not very responsive to couples,” she said and separating the two in care just exacerbated each of their issues.
“Remember, no matter how much you do, it will never be enough — you will always feel guilty. I think my car could get to Ottawa on its own but I can never get there enough,” said Spadadora who lives in Ancaster.
But it is not all guilt and glumness.
Andrew Ward, a Mississauga Library worker was at the session representing the Trillium Foundation, and after he brought his official message, he brought his informal one: caregiving can still be a lot of fun.
Since he is now ferrying his parents to the AquaFit and the yoga classes anyway, he has joined right in, and he has the sore shoulders to prove it.
“It has opened levels of communication with my parents that I thought I’d never have,” said Ward. “I feel closer to my parents now than I ’ve ever been.”
The saddest thing about the whole presentation. Spadadora’s too-true statement that, “We’ve been talking about these same issues for 20 years.”