N.W.T. woman speaks out after husband died while waiting for 'essential' home renovation

This is part twoof a series on the housing crisis in the Northwest Territories.

For five years, Elizabeth Hardisty fought two separate battles to improve her husband Percy's quality of life.

One was administering Percy's lifesaving dialysis treatment four times a day from theirliving room in Fort Simpson, N.W.T.

The other: getting a loan from the N.W.T. Housing Corporation to build an extension to their home, which would be used as a small closet to store the fifty odd boxes that came once a month for his medical care.

She lost both on April 17, 2019: the day Percy passed away.

"We had a great faith, and I thought [Percy] was going to heal," Hardisty said, recalling the last time she saw her husband alive. A medical emergency brought him to Stanton Hospital in Yellowknife, where he spent his last hours. "It was a shock."

Elizabeth is sharing her difficulties with getting housing renovations approved through the N.W.T. Housing Corporation as she continues to grapple with her husband's passing. She's hoping her story will help other families avoid their suffering, in some of their darkest days.

Stepping back from a life of leadership

Service to the Dehcho peoplewas the centre of Percy Hardisty's life.

His list of titles runs long: businessman, veteran of the Canadian Armed Forces, two-time chief of Pehdzeh Ki First Nation in Wrigley, N.W.T., chairperson and co-founder of Fort Simpson's Dehcho Friendship Centre. Hardisty also served on many boards, including as an executive member of the Dehcho First Nations.

In 2002, Hardisty received the Queen Elizabeth IIGolden Jubilee Medal for his outstanding contributions to his community, and Canada as a whole.

Percy's diagnosis of end-stage renal failure and vasculitis, a rare disease that causes blood vessels to become inflamed, changed his life in 2014. He stepped back from the work he loved to start peritoneal dialysis treatments, to keep him alive.

For Elizabeth, it meant stepping into a full-time caregiver role.

The boxes filled every little corner. All we had was like four feet, little alleys in our home.- Elizabeth Hardisty, Fort Simpson resident

Fort Simpson, with a population of1,258, does not have access to specialized medical professionals who could administer Percy's treatment.

Four times a day, Elizabeth would do an "exchange": pump sterile fluid through a catheter into Percy's stomach, where it would collect waste and water, replicating kidney function. She would then drain and replace the liquid a few hours later.

Once a month, a truck with supplies from Alberta would unload fifty boxes of liquid, IV bags and hand sanitizer at the Hardisty house for Percy's treatments.

Elizabeth tried to free up as much space as she could in their small house to fit the boxes, but it quickly got crowded.

"[The boxes] filled every little corner," she said. "All we had was like four feet, little alleys in our home."

Percy tripped and teetered over the boxes scattered around their home. Elizabeth worried about how the lack of space could affect his condition, and decided to do something about it.

Addition is 'essential' to quality of life: Percy's doctor

The Hardistys applied to the N.W.T. Housing Corporation's mobility modification program (formerly the CARE program) that gives up to $50,000 in forgivable loans for home retrofits to those with a disability.

In that application, the Hardistys asked for the addition, along witha shower renovation for Percy's reduced mobility and for regular furnace repairs.

According to the CARE program policy, N.W.T. Housing Corporation representatives must complete an on-site visit before adding an application to a priority list. (Applications are scored based on need).

The department also needs proof of your medical disability or condition from a doctor before considering your application.

Dr. Alan McMahon, Percy's nephrologist in Edmonton, wrote the couple a letter of support in 2017. The letter argues the addition is "essential" because it will not only improve Percy's quality of life, but will also minimize the "risk of serious infection" from a cluttered home space.

McMahon also asked the N.W.T. Housing Corporation to "expedite" the Hardistys'application, because they already filed one in 2014. (Elizabeth Hardisty could not find a record of that first application). McMahon declined an interview for this story.

'It just makes you want to give up'

The Hardistys eventually got approval for their bathroom and furnace needs.But they never heard from the N.W.T.Housing Corporation on the addition, Elizabeth says.

"[The addition] would've made life a little more bearable," Hardisty said. "He could've had all his supplies, masks and everything centrally located, instead of having to store it here and there in the house."

They sent many follow-up emails to the corporation and to their MLA but never got a timeline for their approval.

"It makes it more frustrating because you're also going through a lot of medical challenges, and emergencies and stuff," she said.

"It just makes you want to give up."

In an email to CBC News, the N.W.T. Housing Corporation said it couldn't speak to this specific case, citing privacy concerns.

The Housing Corporation can initiate emergency projects quickly without the need for an on-site visit, the email continued, but would not specify whether that was an option for the Hardistys. In the last three years, the N.W.T. Housing Corporation has doled out $294,000 to 16 mobility program applications.

The Corporation also works with homeowners to figure out a more suitable living arrangement if they can't live independently, like public housing or seniors' facilities that have mobility features already included.

Those in similar situations to the Hardistys are asked to contact their local district office.

Third-party tribunal recommended to oversee N.W.T. housing

Denise McKee, the executive director of the N.W.T. Disabilities Council, said the Hardistys' case is tragic, but not unique.

"We deal with this on a daily basis," she said. "You see someone who's in a real dire situation, who has limited time and access to do this on their own and they just become disillusioned.

"Asking people to cope in the most dire of circumstances isn't the best way of supporting them."

There's also no statistical information about how many people might need housing accommodations due to their disabilities, whether physical, cognitive or emotional, she continued.

For those who do need programs, the N.W.T. Housing Corporation uses criteria, like a formal diagnosis of a person's disability, that puts up barriers for those living outside the regional hubs who don't necessarily have access to that kind of professional help, McKee continued.

There really isn't any type of independent type of oversight, where people can actually bring their concerns.- Denise McKee, executive director of the N.W.T. Disabilities Council

Hardisty said she would like to see the Corporationput in place a special representative for people with disabilities or long-term caretakers to help them navigate the system.

"You need help because you're just barely coping through all these medical things," she said. "[The N.W.T. Housing Corporation] should try to make life easier, somehow."

McKee agrees, but takes it one step further.

She wants the N.W.T. government to establish an independent, third-party tribunal to review any concerns or questionable living conditions across the territory.

If McKee had it her way, the tribunal would include an Indigenous component, someone with a disability lens and someone with experience working with the N.W.T. Housing Corporation.

The tribunal would mean accountability for those who don't know where else to turn, she continued.

"There really isn't any kind of independent type of oversight, where people can actually bring their concerns," she said.

Helping others, even in death

Percy's memory lingers everywhere in the Hardisty home.

The chair he used to sit in for dialysis treatments, kept empty.

Bible verses, written out on colourful construction paper, line the walls where his IV pole used to be. Photos of Percy dot Hardisty's desk, her mantle, her walls.

Hardisty believes her late husband would've wanted her to share their story with the world.

It's too late to improve Percy's last days but, she hopes his story can give solace to others going through the same circumstances.

"Maybe, out of all this, [our story] could help somebody else," she said.