Her daughter Maggie was born with a rare congenital condition that doctors knew would end her life early. They predicted a lifespan of two to three months. As the girl exceeded expectations by reaching her third and then fourth birthdays, Smith was happy for the time she had with her daughter, but knew that time was going to come to an end soon.
What was hard, she says was not having someone to talk to about what would happen when her daughter did die.
“I thought I’d be judged,” she said. “I needed to say that out loud and start preparing.”
Now a caregiver support co-ordinator with Caregivers Nova Scotia, Smith helps organize support groups for caregivers of all types, whether they are caring for an aging parent, spouse or child.
What’s important about these meetings, she said, is that it allows people to talk in a completely confidential setting about the struggles they are facing with people who are in or have been in the situation themselves.
Right now she is holding support groups in four areas and is hoping to start one in Pictou County this fall.
The role that caregivers play is crucial, she said, pointing out that 98 per cent of seniors receiving home care services would be unable to remain safely at home without the help of an unpaid caregiver.
“These are essential services that loved ones provide,” she said.
Often even the caregivers themselves don’t recognize the importance of their roles.
“One of the biggest difficulties we have is helping a caregiver to self identify. Many don’t consider themselves to be caregivers.”
She gives as an example an 85-year-old man who provides care to his 82-year-old wife who says, “I’m not a caregiver. I’m her husband.”
“Sometimes that’s a pretty big barrier to overcome, to acknowledge that what you are doing is extraordinary. It’s above and beyond what you thought you’d ever be tasked.”
Caregiving doesn’t end when the person receiving care goes into a long-term care facility either, she said. It changes.
For whatever stage of caregiving a person is, she said support groups can be beneficial because it helps people see they’re not alone.
“It’s kind of like finding the home planet,” she said.
If you would like to find out more information about Caregivers Nova Scotia contact Cindie Smith at 1 (877) 488-7390 or visit www.caregiversns.org.
Facts about unpaid caregivers:
– The number of people giving unpaid care in Nova Scotia is 31 per cent or 1 in 3 people
– 98 per cent of seniors receiving home care services would be unable to remain safely at home without the help of an unpaid caregiver
– Unpaid caregivers save the Canadian health care system an estimated $25+ billion per year