A mother in Halifax is expressing her concern over a lack of suitable options for her adult daughter, who lives with an intellectual disability and severe epilepsy.
Helen McTague has been providing her daughter Robin with around-the-clock care ever since the 27-year-old was born.
Although Robin is non-verbal, the two share an incredibly strong connection, which makes conversing and understanding one another just as possible as any other mother-daughter duo.
But the decades she’s spent learning how to provide the best possible care for Robin isn’t something someone can pick up overnight, nor is it something long-term care facilities in Nova Scotia are suited for.
That is beginning to worry the 63-year-old caregiver, who lives with multiple sclerosis (MS). She knows what is working for them now, won’t always be an option.
“She always has to have one-on-one care,” McTague said.
Robin’s room contains only a few items, like a dresser and a bench.
She used to sleep in a bed that was low to the ground but over time, began to prefer sleeping on the floor.
It’s the ideal situation for her at the moment, but not likely one that can be feasibly replicated in a long-term care facility.
“I’m getting concerned about if something happens to me, long-term care for my daughter, what would be available?” McTague questions. “Right now, as far as I know, there is no facility where she would be able to be cared for properly.”
“I’m starting to get more and more concerned about it because age is inevitable but also there’s an added factor in there that I have MS. Although my MS is not debilitating, if I get sick, if I get the flu or get sick, then hands and feet don’t always work.”
As her primary caregiver, she gets regular respite help from a worker she calls “second to none” and “a godsend.”
Ensuring that level of care is kept up and maintained when the time comes for Robin to enter long-term care is never far from her thoughts these days.
“There’s no such thing as being able to say, ‘You know what Robin, Mom doesn’t feel well right now, we’ll do this tomorrow,’” she said. “That’s not the case. Her care is intense and 24 hours a day.”
“If I could think, ‘Okay if something happens to me this is where Robin will go, she’ll be cared for here, they’ll know what to do and it’ll be a good space for her,’” she said. “The peace of mind I would have would be priceless, unbelievable.”
Although Nova Scotia is ill-equipped for specialized long-term care focused on people with disabilities, it’s a situation all three of the province’s political party leaders agree needs to be addressed.
“As we continue down the road of long-term care and assessment of that, we do need to look at are there the right places and should we put in places for those younger people who are coming into care in the province?” said Premier Stephen McNeil.
“My hope is that the government is constantly looking at how things can be done better,” said new PC Leader Tim Houston. “To make sure that people are being properly cared for physically, emotionally, socially.”
“This is one in a long list of investments that the government hasn’t met up,” NDP Leader Gary Burrill said of the long-term care situation.
While there are no immediate plans to create such facilities, that talk could be seen as a good sign of things to come.
But for those who find themselves in such a situation currently, or will in the near future, it might not be enough to calm their fears.
“She needs to have the very best quality of life as possible,” McTague said of her daughter.
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