What life is like now for 3 people with brain injuries — and their loved ones

With the COVID-19 pandemic causing a major upheaval to health care in Ontario, those who need around-the-clock observation are experiencing some of the most significant disruptions.

Over the past two years, CBC Ottawa has been following the stories of three people in eastern Ontario living with traumatic brain injuries — one in hospital, one at home and one at a long-term care facility.

We recently caught up with their loved ones to hear how they're handling these uncertain times. Some responses have been edited for length and clarity.

'There's nothing we can do for Ken'

Ken Rekowski has been living at the Renfrew Victoria Hospital for more than a decade, after a car crash on a rural road left him with severe physical and cognitive disabilities

The 48-year-old has impaired speech and problems forming new memories, while limited mobility on his right side means he needs a wheelchair to get around.

Rekowski's twin sister, Kareen, has been one of the people most involved in the former security guard's care.

Things kind of came for a halt to Ken. March 12 would have been the last time Ken would've worked out at the gym he goes to. March 13 would've been the last time Ken had his kinesiologist working with him and his support worker. And as of March 20, that was the last time I was at the hospital.

Last Monday, I finally received an extension to Ken's room for us to be able to call him. Both my mom and I called Ken that afternoon. Ken was asking me if I could come in and take him out for a while, and asking me if I could also bring in dinner for him. I told him that we still couldn't. 

I don't know where they would put Ken if they had to move him. And I don't know what that would do to Ken, either.- Source

Both mom and I called Ken [again on Friday]. He was lying in bed. He said he's bored and would like me to come in and take him out for a while. He misses getting out of the hospital, misses home, misses seeing people, misses going to the gym and going to Tim Hortons, misses home-cooked meals, misses his friends and family. He says the days are long with nothing to do.  

I'm not quite sure of the extent of what he knows about this or understands about this. 

It's a concern [that his bed might be needed for a COVID-19 patient]. I don't know where they would put Ken if they had to move him. And I don't know what that would do to Ken, either. 

My mom and I, we both feel kind of helpless. Because there's nothing we can do for Ken right now, except to stay home and stay safe.

'Time to think about what she's lost'

A car crash in 2006 left Jodi Graham with numerous injuries, including extensive bleeding in her brain.

Graham spent months in a vegetative state, and while today the 38-year-old has no major cognitive impairments, she remains severely physically disabled.

She's still relearning how to walk, has limited vision and has to communicate with sign language and touch-screen technology because of her impaired speech. She also has a very weak cough, which puts her at extreme risk were she to contract COVID-19.

Her mother, Cheryl, cares for her at home and says the past few weeks have been among the most trying.

They've been tough. She doesn't have any [in-person] physio, any therapy appointments any more, because she would be high-risk. She's got a lot of time on her hands. It's hard on her emotionally. She's more depressed, more upset in general. 

Her neck is really bad. I can't manipulate it like they do. Her head is really tipping over, and of course that affects her swallowing and [can lead to] choking. She's got so many moving parts that when one goes off, it throws everything off.

She's told me that this time is a constant reminder that she has no friends and a lonely future.- Cheryl Graham

Everybody's saying how hard it is to be left at home. They're so out of sorts — social people are just lost. For Jodi, she was a social butterfly. It was incredible the number of friends [she had]. 

We're trying to structure the days, but it's pretty boring for her. And it gives her so much time to think about what she's lost. She's told me that this time is a constant reminder that she has no friends and a lonely future. She spelled it one letter at a time. So that, in itself, is heartbreaking. 

This is something that is affecting everyone. No one on the planet right now isn't being affected. So it's not like you can walk away from this and say, "I don't know how [people like Jodi] feel. I don't know what it would be like." 

'Almost a relief'

Shawn Hill was a chef and musician before he fractured his skull on his way home from a bachelor party in 2018.

The 44-year-old now lives at a long-term care home in west Ottawa while his family waits for a spot to open up in a facility designed for people with brain injuries.

While he has no significant physical disabilities, his cognitive impairments — from perpetual confusion to a near-inability to form new memories — mean he can't be cared for at home.

Melissa Acheson is his partner. She and their son, Levi, last visited Hill at the home in mid-March.

He's pretty aware, and I find that interesting. We chatted through Facetime [recently], and he kept bringing it up — the fact that he remembers COVID-19, or remembers watching the news, and knows that this is a situation that's happening. But he can't remember what he had for breakfast. It's just amazing to me the stuff that he's able to keep in his brain, and then what he can't. 

On the other hand, I don't know that he's fully aware of the impact of it on a global level. I know he knows he has to stay where he is. 

I just imagine what that would be like for him, and how lonely it would feel.- Melissa Acheson, Shawn Hill's partner

[The home has] a specific nurse who is working with Shawn to get him walking every day, so at least he's able to get outside and have fresh air and go on nice big walks. 

If he were to catch it, I feel like he wouldn't be part of the demographic that's considered high-risk or immuno-compromised. Chances are he'd be fine. 

I feel like it sounds really terrible for me to say this, but there's almost a relief that we feel about not having to go [visit]. To be totally honest, going to visit Shawn isn't our favourite thing. It's hard. In a sense, that guilt has been taken away from us [now that we can't] visit. We always refer to him as "old Shawn" or "old Daddy," and that's who we miss. So when we go visit, we don't feel any better. It's actually worse, thinking of how different he is. 

I do have these moments where I just think about how much more difficult it would be to be Shawn in this situation, and have to be essentially on lockdown. And I just imagine what that would be like for him, and how lonely it would feel.

And then I feel guilt in a different way — that I can't have him here with us.