Color & Control:

Space Invaders: When Your Home Becomes Someone Else’s Workplace

By Stephen Trumper

Anyone who has just been discharged from hospital or rehab following a significant medical issue usually encounters some form of what my wife once called the “home invasion.”

That’s when a small task force—or, in my case, legions of specialty help—suddenly come knocking at the door. For me there were: Techs. PSWs. Nurses. Physios. OTs.

More than 20 years ago my spinal–cord condition unexpectedly worsened and, one frightening January morning, an ambulance whisked me to Emergency. I was turning blue. I wasn’t breathing much.

In Russian history there is a horrendous era euphemistically known as “the time of troubles.” This was my version of it, including a delicate neurosurgery with no guarantee of success, followed by weeks in hospital and rehab, going from worse to better and worse to better again and again.

After three months of ups, downs and too many tears, I was exhausted, frustrated, cranky, scared.

But I was stronger. More importantly, I could now, with one major exception, clearly envision the rehab road ahead. It was a route that, for my emotional needs and for how I choose to live life with a disability, had to begin at home, with my wife and daughter, not at the hospital.

And so the invasion began. Even before I got home the man with the oxygen tank arrived.

I came next, brought into the house on a stretcher by two burly paramedics, who expertly transferred a grateful me into my own bed for the first time in months.

Every day would bring with it at least one specialist visitor. It was an impressive amount of help, and we were grateful for it. But still, for a family that zealously guarded its privacy, the influx came as a shock.

It’s clear, through survey after survey, that Canadians want as much medical help to come into our homes as possible, particularly as we age.

However, what many of us have discovered is that homecare often arrives without much care or compassion, suddenly turning our tranquil, comfortable homes into bustling workplaces too often occupied by rushed, rude, thoughtless space invaders who barrage spouses and other family members with too many questions and requests.

It may be difficult for most of us to accept, but perhaps the biggest challenge facing homecare and the rest of our complex healthcare system is simple human frailty and the emotions, insecurities and fears that drive most people to act out in ways that, somewhere at their deepest levels, they know they shouldn’t do.

I first encountered this darker side of homecare when I realized office politics doesn’t remain at their offices. I have listened, silently shocked, as many a space invader has told me how much they hate their bosses, their coordinators, their colleagues.    

I have also heard myriad rants from disgruntled invaders about the glaring inadequacies of our healthcare system and how it is wearing them down.

I once had a middle manager take exception to one of my concerns about how her agency operated. This was at a meeting held at my house to improve my service. She took them so personally that she stomped out of the house.

Everywhere there are health-related agencies that, in their various mission, vision and values statements, declare that they are “client-centred” or “consumer-focused.” This may be true in many cases, but these kinds of statements are so easy to write but very hard to fully commit to.

We have had nurses who phone in to thoughtfully tell us they are running late, then never show up. We have had PSWs who don’t listen, have weak hygiene habits and are overly rough with me.

I have been on the board of directors for a major Toronto hospital—Holland Bloorview—and understand a lot about the tensions and transitions in healthcare today. There are many, including a shortage of good PSWs. I have much sympathy with the workers who are constantly pulled in different directions, who never get enough hours, who are asked to do too much in too short a time. These are valid concerns, including far too many schedulers and coordinators who don’t seem to schedule and coordinate very well.

But that all said, these problems, tensions and behaviours should never get in the way of vulnerable people getting better.

Sadly, they too often do.

Stephen Trumper serves on the board of the Canadian Abilities Foundation. He is also a journalism instructor at Ryerson University.

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