'We've lived with social distancing long, long before the arrival of COVID-19': Josée Legault

Josée Legault, special to CBC Radio

Can a fish catch the virus? When do I get to go back to school? I'm tired of not seeing my friends. Why don't we go to the movies anymore? When are you going to be finished writing your column?

These questions sound like they are coming from a child, right? They are not. 

These questions are just a few of many coming from Manon, my 57-year-old little sister. She is intellectually disabled, you see, and I'm her caregiver.

I myself am 59.

I've been my sister's only caretaker since our parents passed away in the mid-1990s from cancer. In the years since, Manon spent some time in a group home. But six years ago, she moved in with me full-time. Then, last fall we came to a new arrangement: half-time at home with me and half-time in a new residence.  

But in March, with the COVID-19 crisis looming, anticipating that the government would put all residences for the disabled and the elderly under lockdown, I decided to bring Manon back home — at least until the crisis blows over. 

Now, of course, it looks like we'll be together for many months. 

So welcome to quarantine with a disabled person.

Because of the pandemic, many families just like ours are stuck inside. All families are unique, of course, but our common denominator is that we've lived with social distancing long, long before the arrival of COVID-19.

There are few things that distance you more from the rest of society than living with and taking care of an intellectually disabled adult. Your friends and colleagues — also in their 40s, 50s and 60s — seem to have normal lives, grown children who have moved out, stable couples who travel, active social lives and so on.

My arrangement with my intellectually impaired sister, which takes up enormous amounts of time and energy, is seen as something of a bummer that puts a damper on normal activities: you don't get to go out as much. You can't really travel because respite is barely available.  

In other words, your life is so different from everybody else's that even the oldest and closest of friends forgets you. You become a full-time outsider.

So how's it going now in confinement because of the virus? Well, here is a peek into what's happening at my place.

A lot of repetition

Because my sister has such a short-term memory, I have to repeat the same hygiene guidelines a couple of dozen times every day. "Wash your hands," I keep telling her every half-hour or so, explaining all over again exactly how she is supposed to do it.

Fighting boredom 

Because Manon is cut off from her regular activities, she feels lost, so I have to find things for her to do. When I sit down to write my columns, I have to ask her to take care of herself. That is basically Mission Impossible. Manon doesn't know how to entertain herself, so I sit down in front of the keyboard, I get up, I sit down, and once in a while I get a break when she watches TV.

Daily mass, circa 2020 

Every day, at 1:00 p.m. sharp, Manon and I sit down to watch Quebec Premier François Legault's televised press conference. It has become a new version of going to church for many Quebecers.

"I love you Mr. Legault!" my sister shouted at the screen the other day. And then, bang! Full of fear, she shouts, "Stop talking about the virus! What you are saying stinks!" Like everyone these days, Manon's emotions are on a roller coaster.

Looking for outlets

I only shed tears when I am on the telephone with a couple of very close friends. We try to cheer each other up with jokes and funny stories. Still, someone I thought was a good friend — and ironically, who lives with her intellectually disabled daughter —  called me this week to tell me I was "hysterical" and "too intense" because one evening I dared to talk about my anger at how unprepared the western nations were for a pandemic.

Oh well, such is life.

Yes, life with Manon in confinement is a challenge. I remind myself that isolation is a challenge for many people. It's just the world we're living in right now.

Happily, Manon is very artistic. At home, she has every possible tool to draw, paint, play music, et cetera. She especially loves painting flowers, trees, houses, suns and stars. She's painted many portraits of us together. She makes fabulously original birthday cards for me and our friends and neighbours. They are naïve and child-like but always happy. Optimistic and bright.

Walks, on high alert

Taking my sister for a walk in the best of times is always an adventure. Now, our walks are much more complicated. Manon is aware that she needs to stay away as far as she can from the virus. She is terrified.

So no matter how much I keep her two metres away from other people and tell her that will keep us safe, she stays on full alert. Whenever she sees someone approaching, she grabs my hand and tries to leap out of the way. Flying through the air, we must look like a strange team.

Plagued by fear

A caregiver's fears never disappear. And now, of course, there are new ones. What would happen to Manon if I get sick? Worse, what if I die? These questions plague me.

But even when both of us are bone-tired and anxious, we somehow manage to pull ourselves together. I tell Manon that we are two soldiers, and we are going to win the battle.

"We won't give up," Manon keeps repeating. It's good advice. She's right. 

Letting in the light

Things are tough now, but they will get better eventually. We just don't know when.

Manon gets out the board games and we play Trouble. We crank up the music and we dance and sing. We even exercise, stretching our arms and legs so our hearts get pumping.

After supper, we settle in and binge on TV. We both love the shows about home renovation. We love watching walls getting knocked down, kitchens getting new counters, windows letting in more and more light. It is like better worlds are being constructed right before our eyes. If only.

At bedtime, before I close my eyes, I thank God that Manon and I are doing just fine. I make sure to add another special thank you — for Home and Garden TV.

Click 'listen' above to hear the full essay.