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They came to celebrate Jo. He would have loved it.

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In September 2015 Maclean’s told the story of Joël Aubin (Jo has Alzheimer’s. He’s 38). Three years later, we followed the story of Jo and his wife, Robin Giles (This is what Alzheimer’s is like at 41). After his condition took an unexpected turn, Jo died on Nov. 29 at the age of 42.

Joël Aubin managed, in the end, to get about as close as he possibly could to what he wanted.

In mid-November, it was like a switch flipped: one day, things were as they had been for the last several months, with early-onset Alzheimer’s disease continuing its assault, and the next, everything changed. It’s unclear exactly what happened, but some kind of brain event left Jo, 42, suddenly immobile, bedridden and unable to swallow.

Over the past year, his needs had escalated to the point where his wife, Robin Giles, forced herself to put him on the waiting list for a long-term care facility near their home in London, Ont. The decision tormented her, because Jo abhorred the idea of going into a nursing home like the one where his mother’s life had ended from the same inherited form of the disease when he was just a teenager. What Jo wanted was to be able to end things on his own terms, but Canada’s assisted dying law does not permit people with dementia to make advance requests when they still have capacity to consent, to be acted on later.

So at the end of this summer, when a bed came up for Jo in a nursing home, Robin couldn’t bring herself to do it. After she turned down the spot, she had the most peaceful night of sleep she’d had in a long time, but it seemed an impossible choice would still be forced on them eventually.

Instead, there was Jo’s sudden turn in mid-November. It would seem afterward to Robin and to Jo’s oldest friend, Shawn Veilleux, that Jo simply determined for himself how things were going to go.

Robin followed Jo’s wishes and decided against intravenous nutrition or any other measures that would prolong things. One of their friends procured a top-of-the-line hospital bed for their apartment, and others took rotating days off work so they could be there around the clock to help. Jo’s doctor made daily house calls, fine-tuning his medication to control his frequent seizures and keep him comfortable. Shawn and his family arrived from Ottawa, and Shawn more or less moved into the apartment.

READ MORE: ‘I am mine’: This is what Alzheimer’s is like at 41

For the last days of his life, there was a pack of people around Jo at all times. They listened to music, they talked, they made highly inappropriate jokes. They were loud. It was beautiful and exactly right for Jo. “I loved it, even though I hated it,” one of them said later. To another, it seemed like Jo gathered them all together and kept them like that long enough to make sure they would be okay.

Early one morning, a week and a half after Jo stopped eating, he peacefully exited the world with the people who loved him most by his side. He had not spent a single day in a hospital or long-term care facility.

Two days after he died, those same people gathered with dozens upon dozens of others to celebrate Jo. They did it exactly as he wanted. They packed the back room of a brewery Jo loved, which was owned by some friends. There were massive quantities of pizza and chicken wings and chips and egg rolls, and all the taps at the bar flowed freely.

There was music everywhere. Everyone showed up in the requested dress code of jeans and band t-shirts, and Jo’s closest male friends wore shirts from his closet. Two teachers who work at the school where Robin works—where Jo used to teach—played guitar and piano and sang a roster of his favourites. There were small boxes scattered around the room next to photos of Jo cradling his guitar, where people could donate to a scholarship fund that would be set up in his name.

The room felt very full. It was packed with bodies and voices, of course, but it also felt like it was overflowing with everything Jo and Robin have gone through in the last several years, with the emotion and effort it took for them to navigate it, with the love of those who have helped to carry them along, with a tiny exhale of relief and a gasp of deep sadness, with the grasping for what happens now.

They told stories and laughed uproariously. People were fine and then suddenly they weren’t, undone by a fierce hug or a new face walking through the door.

At one point, everyone raised a glass and toasted Jo with a French-Canadian swear word, because until the very end of his life—in a way that defied explanation given the progress of the disease—Jo remained so present and witty and in command of perfect comedic timing and just the right one-liner for the moment.

On one wall, a photo slide show meandered through the decades. There were Jo and Shawn posing behind a theme park cut-out as Tweedledee and Tweedledum; Uncle Jo playing guitar as Shawn’s son, Luke—now eight years old, then just a baby—gazed raptly up at him; friends piled on couches at parties and on student rental front porches; Robin and Jo leaping through the air in their Chuck Taylors on their wedding day. There were dozens of photos with Jo and Robin draped around each other’s shoulders: baby-faced high schoolers, radiant in formal wear at their friends’ weddings, in their pyjamas on Christmas morning.

It seemed like every second photo featured the same Jo expression: mouth cranked into an open grin, eyebrows leaping off the top of his face, ready to eat the world in a single joyful gulp.

Toward the end of the evening, someone picked up a guitar and stepped to the microphone to sing one of Jo’s favourites, Pearl Jam’s “I Am Mine.”

The North is to South what the clock is to time
There’s East and there’s West and there’s everywhere life
I know I was born and I know that I’ll die
The in between is mine
I am mine.

And the feeling, it gets left behind
All the innocence lost at one time
Significant, behind the eyes
There’s no need to hide
We’re safe tonight.

The ocean is full ’cause everyone’s crying
The full moon is looking for friends at high tide
The sorrow grows bigger when the sorrow’s denied
I only know my mind
I am mine.

They threw such a good party. Jo would have loved it.

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‘Too soon to celebrate’ Ottawa’s low case count, says Etches

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Ottawa Public Health (OPH) logged just 11 new cases of COVID-19 on Tuesday, the lowest daily total since Sept. 1.

Because of the lag between testing and reporting, the low number could simply reflect low turnout at the city’s testing sites on weekends — all month, new case counts have been lower on Tuesdays and Wednesdays. 

During a virtual news conference Tuesday, the city’s medical officer of health Dr. Vera Etches said she doesn’t read too much into a single day’s report.

“I don’t think we can make too much of 11. Actually, it could be a lot higher tomorrow — I would expect that, on average,” she said. “It’s too soon to celebrate.”

Provincewide, public health officials reported 1, 249 new cases Tuesday.

OPH also declared 62 cases resolved Tuesday, lowering the number of known active cases in the city to 462. Two more people have died, both in care homes currently experiencing outbreaks, raising the city’s COVID-19 death toll to 361. 

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Santa Claus isn’t coming to Ottawa’s major malls this year

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Santa Claus may still be coming to town this Christmas, but he won’t be dropping by any of Ottawa’s major malls, thanks to the COVID-19 pandemic.

On Friday, Cadillac Fairview said Santa won’t be making an appearance at any of its 19 malls across Canada, including Rideau Centre in downtown Ottawa. On Tuesday, Bayshore and St. Laurent shopping centres confirmed they, too, are scrapping the annual tradition.

“Due to the evolution of the situation in regards to COVID-19, we have made the difficult decision to cancel our Santa Program and Gift Wrap Program this year,” Bayshore spokesperson Sara Macdonald wrote in an email to CBC.

Macdonald said parent company Ivanhoé Cambridge cancelled all holiday activities “due to the rising number of COVID-19 cases across the country.”

Macdonald said families that had already booked an appointment to visit Santa will receive an email with more information.  

Virtual visits with Santa

Rideau Centre said based on customer research and discussions with public health officials, its North Pole is going online this year.

“Children will be able to have a private chat with Santa,” said Craig Flannagan, vice-president of marketing for Cadillac Fairview. “You’ll also be able to join a 15-minute storytime with Santa over Facebook Live.” 

At Place d’Orléans Shopping Centre, visitors are invited to take a “selfie with Santa” — actually, a life-size cutout of Santa Pierre, the man who’s been playing Santa at the east end mall for years.

“We understand that this is not ideal, but in lieu of this tradition we will be doing what we can to maintain and encourage holiday cheer,” according to a statement on the mall’s Facebook page.

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Ottawa Bylaw breaks up two large parties in Ottawa over the weekend

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OTTAWA — Ottawa Bylaw is investigating social gatherings of more than 10 people in private homes across Ottawa last weekend.

Mayor Jim Watson tells Newstalk 580 CFRA that Ottawa Bylaw broke-up two house parties over the weekend, with 20 to 25 people at each party.

“That’s the kind of stupidity that angers me, that’s where the bulk of the transmissions are taking place, if we exclude the tragedy of the long-term care homes; it’s these house parties with unrelated people,” said Watson on Newstalk 580 CFRA’s Ottawa at Work with Leslie Roberts.

“The message doesn’t seem to be getting through, particularly to some young people who think they’re invincible.”

In a statement to CTV News Ottawa, Bylaw and Regulatory Services Director Roger Chapman says, “There are still ongoing investigations from this past weekend that could result in charges.”

Chapman says recent investigations led to two charges being issued for social gatherings of more than 10 people in a private residence in contravention of the Reopening Ontario Act.

“In one case, up to 30 individuals were observed attending a house party in Ward 18 on Oct. 24,” said Chapman.

“The second charge was issued following a house party in Ward 16 on Oct. 31, where up to 16 individuals were observed to be in attendance.”

The fine is $880 for hosting an illegal gathering.

Alta Vista is Ward 18, while Ward 16 is River Ward.

Ottawa Bylaw has issued 24 charges for illegal gatherings since the start of the pandemic.

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