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‘This is so deeply messed up’ – Calgary families cope with death and dying during coronavirus

Gail Garden’s family got the call from the Calgary hospice Wednesday. Her dad’s health had taken a turn for the worse overnight.

Rob Garden had valiantly fought brain cancer for nearly 10 years. Recently, just as the grip of coronavirus took hold, his health began to fail.

Gail said they were only allowed in his room one at a time to say goodbye. They all wore masks and stayed six feet apart. They were escorted to and from his room.

“They’ve set up a room for us with chairs and it looks exactly like an AA meeting on TV because we can’t be close,” Gail wrote in an email at 11:09 a.m. Wednesday.

“They said we have to keep our masks on or they will ask us to leave. I don’t know if you’ve worn one of these disposable masks, but it gets humid and crying is a wet activity… I’m sure you can imagine. I felt like I couldn’t breathe in it.”

Rob died Wednesday night, with Gail’s younger sister the lone family member by his side.

“We were worried he would go during an exchange visitor moment,” Gail said via email on April 10.

“It was clear he was fighting that day, but it was overall a peaceful passing.”

Given the circumstances around the coronavirus, it’s put families like Gail’s into a surreal situation, navigating an unforeseen time dealing with non-COVID-19-related deaths.

“This is so deeply messed up,” Gail wrote.

“I know they’re trying their best and doing the right thing for society at large but it’s for sure making this the single most bizarre experience.”

Limit on public gatherings, visitations slowly restricted

On March 12, the first public order given by Alberta Chief Medical Officer of Health, Dr. Deena Hinshaw, to limit mass gatherings to 250 people was put in place.

By March 17, that was changed to a maximum of 50 people and included such events as funerals, worship and weddings.

“I know this will disappoint many, but we must take action to limit the amount of time Albertans are spending in crowded spaces,” Dr. Hinshaw said at the time.

On March 19, restrictions were put in place at seniors’ facilities and other continuing care centres. Previously, immediate family and friends were still allowed to visit.  After this order, only one designated family member was allowed inside. 

Dr. Deena Hinshaw – Alberta’s Chief Medical Officer of Health.

That person was supposed to be screened for symptoms upon entry. This screening was to include a temperature check and a questionnaire.

“Exceptions to these essential visitor rules will be made for family members to visit a person who is dying, so long as only one visitor enters the facility at a time,” Dr. Hinshaw said.

Gail said at her dad’s hospice in Evanston they were allowed to visit, but just one at a time. No children allowed, so her seven-year-old nephew didn’t get to see Rob in his final days.

On March 27, restrictions were put in place to limit gatherings to 15 people or less.

Dr. Hinshaw did acknowledge in one of her daily briefings that through all this Alberta’s medical system was still operating. Babies would be born, people would get sick and injured, and there would be non-COVID-19 related deaths.

She said she knew it would be hard on those families as physical distancing and mass gathering rules tightened.

By April 3, visits to patients in Alberta hospitals were banned, minus a few exceptions.  

Initially given 18 months to live

Rob Garden was first diagnosed with a glioblastoma in November of 2010. He’d retired that summer after a long career working with Telus, managing a team that did large scale corporate telephone installations.

After retirement in August of 2010, Gail said her dad developed a stutter.

“I’d noticed it pretty quick and was like, ‘Oh, that’s kind of weird,’” she said.

Later that fall, Rob and his wife travelled to Oregon and California to camp and sightsee. When they returned, Gail went to dinner with them.

“My dad couldn’t say certain words like redwoods, or Oregon, stuff that he would obviously normally be able to say, especially coming from a trip like that,” she said.

Thanksgiving came and the family gathered together, and her dad would repeat things others had said, thinking that it was a unique thought.

She talked to her sister about it at first, who said she hadn’t noticed these changes. Gail’s brother in law had, though.

It wasn’t until Rob sideswiped a couple of cars after dropping off another daughter at the airport that his wife took him to the doctor. Then the hospital.

After a brain scan, Rob was diagnosed with a tumour in the front part of his brain, just above the ear. It was where his speech was controlled, Gail said.

Despite regular treatment, including brain surgeries to remove the tumour and experimental drugs, Gail said her dad lived a relatively normal life for the past decade. Initially, he was given 18 months to live.

There’ll be no visitors.’

When Veronica Heinen’s sister told the paramedics she would follow behind them as they rushed her mom to the hospital in late March, they told her not to bother.

“The paramedics said, ‘well, there’ll be no visitors.’ And we’re like, ‘what do you mean, there’ll be no visitors?” Heinen told LiveWire Calgary.

Heinen, who has a lung issue herself, knew she wouldn’t be able to visit her mom in hospital, but she thought her sister should be there.

“My sister had to go to the hospital and just kind of, you know, force her way in there,” Heinen said.

“So, she did. She was able to stay there for an hour. So at least mom had somebody there right when she got there.”

The paramedics said, ‘well, there’ll be no visitors.’ And we’re like, ‘what do you mean, there’ll be no visitors?

Heinen’s mom, 84, was in declining health since Christmastime. She suffered from scoliosis and it had begun to take a significant toll on her lungs. She was a strong woman, Heinen said, having been in and out of hospital her entire life with health issues.

Heinen said her mom told her at that time she didn’t think she’d make it through the year until next Christmas.

After being taken to the hospital and her sister having an hour at her bedside, Heinen’s mom was taken to an isolation room.

The following morning, Heinen called the hospital to check on her mom’s condition. Nurses said she was doing better and that she’d be transferred to another floor.

They called back a half hour later informing Heinen that they couldn’t find a pulse.

Her mom died March 27. Alone.

“It’s heartbreaking. I would have liked to be with her,” Heinen said.

Rob’s turn for the worse as coronavirus begins

Over the past year, Rob Garden had started to suffer the occasional seizure. But, it wasn’t very often, Gail said.

“He would just get kind of tired and weird and he would just sit down and then 20 minutes later, he’d be fine,” Gail said.

Rob, 70, had his third brain surgery scheduled for this past December.

With the medication he was on to prevent swelling in the brain, it would make his body diabetic, Gail said.

One day in February, Rob’s glucose spiked, and he was taken to hospital. He spent the day there before returning home. When they got home, Gail’s mom helped get her dad out of the car and walk him to the house. That’s where he fell into a pile of two-by-fours.

The ambulance was called again.

Gail said he never left the hospital after that. He started to have between three and eight seizures per day. He lost the use of his right arm and leg.

“And so, he was just, well, bedridden,” Gail said.

‘I don’t know if he completely understood Dr. de Robles had that conversation, and it was very hard for her. He had questions and some confusion like, ‘well, do I ever get to go home?’

Rob was scheduled to go through another round of chemotherapy in February. But that’s when Dr. Paula de Robles, Rob’s physician, called a family meeting. She said he wouldn’t be well enough to continue with treatment.

They would be providing him comfort care from this point on.

“I don’t know if he completely understood Dr. de Robles had that conversation, and it was very hard for her,” Gail said.

“He had questions and some confusion like, ‘well, do I ever get to go home?’”

Rob was admitted to hospice care in mid-March, just as COVID-19 was beginning its spread across Canada and public health measures were put in place.

COVID-19 public health restrictions

Only there for a few days, Rob’s health deteriorated. Gail said he stopped eating and wasn’t drinking water. Her mom was there with him and had described the change in skin colour due to a lack of blood to his brain and organs.

“She sent me this email that’s probably going to haunt me for the rest of my life,” Gail said.

“She had to have all of those conversations in the hospice alone.”

They’d asked if they could visit Rob together. The answer was no.

In a later visit, Gail said the nurse was heartbroken that the family wasn’t allowed to be together at this time, especially when it was time for difficult conversations.

“Because we can only be there one at a time,” she said.

Rob had a dear friend, Wade, who texted the family because he planned to come and see his pal over the weekend. But no, there would be no visitors from outside the family.

“They were really starting to lock down at the hospital,” Gail said.

Gail said that even she’s had to cut off contact from others. She couldn’t risk being exposed to coronavirus and then not be able to see her dad.

“I’m not thinking about just me. I’m going to turn around and go to this community of people who are literally dying? And healthcare workers who are taking care of people who are literally dying?” She said.  

Gail said her dad didn’t really understand how the world was changing around him. The health precautions, the city shutdowns, the economic catastrophe, schools closed and people are in their homes.

“It’s just like there’s a bubble, where we just sit there and he sleeps and I read and we watched the bunnies run by his weird hospice in Evanston,” she said.

Finding support during death and the coronavirus

Heinen said she’s had her husband Laurence and her sister to lean on after her mom’s passing.

At a time when it would be a steady stream of people coming to the door bearing cards, flowers, hugs and a few tears, Heinen said it’s just “the three amigos.”

“I’d have all my friends here. My sister would have all her friends. People would be at the house, we’d be telling stories and stuff and now we’re just isolated,” she said.

It’s virtual messages, virtual hugs, messages on Facebook saying things like “we’re thinking of you, we love you.”

“It’s just not the same as the real emotional stuff,” Heinen said.

For Gail, the isolation has been ongoing for a couple months.

“I’ve never felt so isolated my life. There’s nobody in my world that understands what’s happening to me,” she said.

“I think about that normally my sisters and I would be there together or that we will be there for our mom and each of us are going through this experience individually right and isolated from each other.”

Gail said her best friend sent her a pie via Uber Eats because she couldn’t hug her. She does have a strong support network that’s helping her where they can, but there’s nothing like the closeness of having people there, in person, to console you.

“I’m for sure isolated from my family and my friends and that grieving that you would maybe do with your support system, I’m doing alone,” she said.

Celebration of life – in the future

Gail and Rob at the Barrett Jackson car auction in Las Vegas in 2014. CONTRIBUTED

Heinen said there would possibly be a future service held to remember her mom. Maybe August. Maybe September.

“Whenever this all goes away,” she said.  

With current restrictions on gathering and physical distancing, having a funeral isn’t really in the cards.

Heinen clings to the thought that maybe her mom wanted to pass away on her own; not to worry them and not to burden them. She would have liked to be by her side.

Her mom had always said that her funeral would be by invitation only – so 10 or 20 people, Heinen laughed. But, instead there’s was a memorial, and with her other sister stuck in Ecuador and grandkids in BC, no one was able to travel.

“What was really challenging was, we had to figure out how to live video for her and her children,” she said.

“That was the most stressful part of trying to figure that out. So, what’s normally a tough time is 1,000 times worse.

“It just kind of feels empty.”

Rob gives back to medicine

Gail said her family hasn’t ever been big on funerals. They thought it was a waste of money.

Instead, Gail’s family had Rob’s body donated to the University of Calgary’s Cummings School of Medicine.

“It’s what he wanted,” Gail said.

“He wanted to help people with his story and hopeful he can with his remains.”

In way, Gail sees it as a silver lining with all the COVID-19 health measures. They don’t have to worry about the physical distancing. 

The U of C holds a service every couple of years for families that have donated, she said. Perhaps they’ll go when that time comes around.  

For now, it’s time for reflection.

“I’m glad he’s not suffering anymore – he had a long and hard fight,” she said.

“He was a very good man, something I always knew but it becomes more and more clear as people share with me their memories of his kindness, gentleness, friendly, sense of humour… all of it. He touched and impacted many lives.

“I guess now I’m grateful for the quiet time to sit with it all.”