Color & Control:


An unheralded place of honour, worry, anguish, joy, love 

By Stephen Trumper

As deadlines for this column came into view, our author was taken in to hospital. He is resting comfortably and offers a throwback column and promises to return next issue with more stories and vignettes about sitting bedside.

For the past year, several times per week, my daughter Hannah and I have hopped into cabs and buses to be with our Judy, Hannah’s mother and my wife of 37 years.

As we motor closer to her, questions buzz around in our heads:
How will Judy be today?
Will she be agitated?
Will she still be glad to see us?
Will she still know us?

As with an increasing number of families, we do our best to comfort, protect and engage a loved one transformed by Alzheimer’s.

Judy now resides in a long–term care facility that seems better than most, but not without flaws. On our visits, Hannah helps her mother in myriad ways: dressing, mealtimes, bathroom, personal care, reassurance and more. Hannah is the one who takes Judy outside, either by wheelchair or by helping her walk.

The contribution of wheelchair-using me is primarily to sit bedside with Judy, talking with her, though she is losing her ability to form coherent sentences and, increasingly, at a loss for any word at all.

So it came as a surprise one recent evening when, as I was taking a pause from recounting great moments of our years together, Judy looked at me, focused her eyes (an ability she is also losing), flashed the smile that first bewitched me, and quietly said “More.”

Over the past year I have come to realize that many of the most emotional, intimate moments of anybody’s life will take place bedside—in a hospital, a rehab centre, an ambulance, a seniors’ facility or one’s own home.

We are bedside as a parent lays gravely ill. We are bedside when a spouse goes in for surgery. We are bedside before, during and after a child is born. We are bedside after

a family member or friend has had a significant accident.

For parents of kids with disabilities, particularly moms and dads of children who spend lengthy amounts of time in hospital and rehab, bedside might as well be a mailing address.

My folks were stellar examples of such devoted parenting. Day in and day out during my weeks-long recovery, at age seven, following my first spinal decompression, they were constantly bedside, jubilantly joshing me along to help keep my spirits up, tenderly comforting me when the inevitable tears of trauma flowed, and attempting to distract me from the frequent, agonizing pain.

At age seven—and again at 12 and 15, following more surgeries—I didn’t give much thought to what Mom and Dad were feeling, though I sure did years later as I sat cribside following Hannah’s birth.

How did Mom and Dad do it? How did they stay so composed, so upbeat, so there for me at my hospital bedside?

My father, an avid outdoors enthusiast as a young man, often said to me, “You can tell a lot about a person by spending time with them in a canoe.” And, he could have added, “by spending time with them bedside.”

I learned something important about Dad in my late 20s, after my GP and I decided I should enter hospital for a few days to run tests to get a better perspective on how my strange, semi-gnarled body was holding up—and to see if there were any further physical problems that might develop as I aged.

On the third morning the medical experts gave me their results: I was doing well, with no major looming concerns. About an hour later, Dad arrived. He looked worried, a sight I have no memories of ever seeing during all those earlier hospital bedsides. Just as memorable: his sheer joy and elation when I relayed the positive results. How he must have fretted about me.

These are bedside moments to treasure. As is this: Throughout the past year of visits with Judy, I have regularly told her she is: Beautiful. Smart. Talented. Creative. Witty. There is a long list of superlatives that I recite.

At some point in my litany, Judy will often focus on me, laugh and smile, sometimes coquettishly, and start moving one hand toward me. But Judy has little depth perception these days, and her hand never quite reaches mine. Nor, try as I might, due to my paralysis, can my hands ever reach hers.

So there we are, two people reaching out but seldom physically touching—a poignant symbol of the growing gulf between us, but also of the immense love that continues, bedside, in new and unexpected ways.

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

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