My parents with dementia won’t move into a care home

What happens in Ontario when a person with dementia is unsafe living in their own home but refuses to move?

One day in December 2017, Dave got an email from his brother Pete telling him that their parents in Mississauga weren’t doing well. Pete had dropped by for a visit. He’d noticed they hadn’t been eating. They’d also been consuming a lot of wine.

“They had a wine cellar,” Dave remembers. “They knew it was dinner time and they’d get wine but wouldn’t make dinner.”

Their mom had been diagnosed with dementia years before. Their dad was her primary caregiver. His dementia came on more quickly.

Dave lived an hour away in Kitchener. He went to live with his parents for about a week. He realized they couldn’t look after themselves.

“They could get up in the morning,” Dave says. “They could get dressed. They could do all that kind of stuff, but they couldn’t make the meals, and they’d both lost a lot of weight.”

Worried about their deteriorating health, Dave suggested that they move into a home, but they refused to consider it. Her mom went so far as to say, “You may as well kill me.”

Who decides?

Although Dave and Pete had a power of attorney (POA) for personal care for their parents, it didn’t automatically mean they could make their parents move into a care home against their wishes. In Ontario, someone with a POA for personal care is only allowed to make a decision about long-term care if a medical professional or evaluator finds a person mentally incapable of making the decision for themselves.

Which is why Dave and Pete got his parents’ mental capacity assessed by their family doctor.

According to Ontario law, the job of the family doctor wasn’t really to decide whether Dave and Pete’s parents were safe living in their own home. It was to decide whether they recognized the risks they were facing and understood the reasonably foreseeable consequences of not moving into a care home.

It’s a fine distinction, but an important one. Just because a person is in an unsafe living situation doesn’t mean they can be removed from that situation against their will.

In the end, the family doctor determined that because of their dementia, Dave and Pete’s parents didn’t have the mental capacity to make the decision for themselves. Dave or Pete were responsible for making the decision for them.

Now what?

Just because Dave and Pete were in a legal position to act in their parents’ best interests didn’t make what came next any easier.

“It was one of the hardest things I’ve ever done in my life,” Dave says. “I’m not sure how to describe the feeling that goes along with taking the people who raised you, the people who you looked to for guidance your whole life… taking their independence away from them. It’s almost overwhelming.”

Dave contacted Joy Birch, Chief Operating Officer at Highview Residences. Highview had just opened a home in Kitchener and could accommodate both his parents in one room.

Together, Dave, Pete, and Joy worked out a plan for moving Dave’s parents into Highview that would cause the least amount of distress for everyone.

“We recognize that when people move into Highview it’s an emotional day,” Joy says. “For the person who’s moving in (particularly if it’s not their idea), but also for the family. We do everything we can to make the person feel welcome and the family feel supported.”

“Highview’s been amazing,” Dave says. “I’d recommend them to anybody. Their staff is phenomenal.”

Looking back

Even though the decision to move his parents was a very difficult one, Dave is certain that if he’d left them in their own home, they would have died there. In fact, he wonders whether his family should have acted faster than they did.

“But the other side of it is my parents are both strong, independent people,” he concedes. “My dad worked his way up to a vice president of Imperial Oil, so there was no one going to push him around. It almost had to play out the way it played out.”

His advice for families in a similar situation?

“Don’t delay. Don’t just put things down to ‘well, people are old and they start to lose their memory.’ You need to recognize what’s going on and act fast.”

Considering dementia care in Kitchener or London, Ontario? Contact us at Highview Residences. We’d be pleased to offer whatever advice and support we can.