“When our emotional needs are met, we can face life and enjoy it.”

What a hopeful report is coming to Toronto City Council’s Economic and Community Development Committee next Wednesday!

City staff is recommending City Council pilot an “emotion-centred” approach to care at Lakeshore Lodge — one of ten long-term care facilities operated by the City of Toronto.  The plan requires increasing front-line staffing to offer 4 hours of care per resident each day, up from 3.5 hours.  But the real breakthrough is a proposed shift in the philosophy of care, from churning through tasks to enabling residents to live better lives. As the staff report says, “when our emotional needs are met, we can face life and enjoy it.”

I know whereof I speak. On July 24th my bike got stuck in the Gerrard Street streetcar tracks. I kept flying until I stopped in mid-air, Road Runner style, and landed hard on the pavement.  The result: a badly broken femur, a broken elbow, two surgeries, recovery from surgery, and then two months in a long-term care facility to let my bones heal before going on to rehab hospital and home.

The months I was “in storage” at North York Seniors Health Centre (NYSHC) allowed me to see long-term care from a vantage few have: that of a healthy person who, unlike residents’ families, is on site 24/7.

NYSHC is a good place. The windows are large, the rooms comfortable, the food surprisingly good and the staff capable. But over the course of my stay deep issues — including many of the issues described in the City staff’s report — became obvious. These excerpts from an occasional journal I kept during my stay tell the story. (Names have been changed.)

September 7th: Woken by the yells. Not an uncommon occurance. This time it is Maryam. Her yell today was, “I can do it myself. I don’t want your help!” The PSW is yelling back, “I have to help you,” followed by loud complaining to colleagues in the hall, perhaps, or to no-one in particular.

Maryam is right. Independence is precious. The PSW is right too. She will be held responsible if Maryam falls. She cannot afford to listen to every resident who says, like the toddlers we are afraid we are becoming, “ME. I do it.”

This could have been a better journal entry. But since this event I have been swept up by the inexorable institutional routine: meds, shower, dress, breakfast, wait for the toilet, wait to get a drink, wait to get back into my room. Now I can’t remember the choice words that came to mind at 5 a.m.

September 11th: A squad bursts noisily into the room at 6:15, flicks on the lights, and says, “Are you ready for your shower?” Ria awakes, groggily, and says, “I have to go poo-poo.” “Yes, yes, there will be time for that,” they say. The curtain stop me from seeing what’s happening, but it sounds as if they have put Ria either in a chair or wheelchair. Ria says, “I have to go poo-poo.” “Yes,” they shout with growing impatience, “you just have to wait.” And then they disappear. I know where they have gone. They are putting 3 or 4 others residents on the toilet. It’s the only way they can get everyone to the breakfast table by 8:30.

When they come back Ria has apparently had a bowel movement on the floor. It shouldn’t be a surprise. The fact that she wears a diaper should let them know she does not have full control of her bowels. A torrent of abuse, all in a language Ria doesn’t speak. “What’s the matter with you. Look what you’ve done. Christ. Look at the work you’ve created.” They belatedly put Ria on the toilet, and disappear again.

It is now 7:43 a.m. Ria is still waiting for her shower.

September 25th: Upon reflection, it seems the troubles on the floor boil down to two: short-staffing and inequity.

At last Sunday’s Family Council meet and greet, the lead topic is staffing levels. On the third floor, the front-line staffing ratio is 1:11. I learn that on the first and second floors, where signs warn us about intestinal and respiratory break-outs, it is 1:14. As for the fourth floor — the one with private rooms — we’re told that there are “no problems.’ It’s because the families have hired their own PSWs.

It’s skimpy staffing given the complexity of the residents. But the bigger problem is that there appears to be no Plan B if a staff member calls in sick, or if there is an emergency on the floor.  And in a physically and emotionally demanding job, with residents who are all vulnerable to illness, falls and confusion, Plan B is part of the day-to-day order.

The other issue is inequity. By my estimates, roughly one-third of the residents on this floor speak little or no English, and cannot make their needs met. Is it any surprise that among those who scream and cry through the day, only one can speak English?

October 12th: A Globe article talks about a woman who chose assisted death as an alternative to what she saw as an intolerable life with Alzheimers. For her, life was no longer worth living when she couldn’t recognize her family. I am curious about the people here with cognitive impairments. I wonder how they see their own life.

Sima does not speak English. She has no teeth. She is in a wheelchair. She screams at the staff, and sometimes hits them. But when I reach my hand out to her, she takes hold of it gently and looks sweetly into my eyes.

Last night, after a yelling bout after supper, Sima waited for the dining room staff to go away. I watched from my table as she sidled her wheelchair towards a food cart, opened a plastic container (requiring considerable effort), took something out, closed the container and returned it to the cart. I rolled past her towards the door and reached out my hand as usual. She took it for a moment, looked right and left, and stealthily passed me one of four cookies on her lap. A gleeful smile. Another sidelong look, and then she passed me another cookie. At that moment, a PSW walked up to us. I instinctively put up my hands as if it was a police raid and said, “It’s alright. It’s alright. Nothing happening here.” I ate my two cookies last night. I hope Sima was able to keep hers.

Where spirits can flourish

That brief encounter with Sima’s mischievous spirit was one of the best moments of my year. One of the aims of “emotion-centred care” is to create many such moments. As care reformer Dr. David Sheard says in Toronto Star’s video of a pilot in Malton that in part inspired the recommendations going to City Council, “Surely it is possible for people with dementia to live. To live, and for their spirit to flourish.” (I’ve watched the first 5 minutes of this video over and over, and am moved every time.)

It’s a tall order to shift from institutional care to loving home. It may be especially hard for the City’s long-term care homes. When I was given the choice of where I wanted to convalesce, only True Davidson Acres made my list. The other convalescent care alternatives offered by the Toronto Central LHIN’s were struck off as friends and family warned me about questionable care or depressing buildings. And it will not only take training for front-line staff — which is part of the City staff’s recommendations — but a willingness to let up on administrative requirements that take staff away from residents. That could be especially tricky if the pilot’s evaluation depends on front-line data.

But it’s a first and exciting step. I look forward to Council supporting it.