Guest Column / Debra Tomaselli

Illness should not dictate how a loved one will be remembered

“I don’t like that the kids are going to remember me this way.”

I glanced at my beloved husband and cocked my head.

Joe sat in the recliner, where he spends most of his waking hours these days. His big blue eyes are glassy. He looks pale. His face is expressionless, a common Parkinson’s condition born of the deterioration of facial muscles.

Joe shifts his head and, like a forlorn dog, turns his eyes toward me.

Why? I wonder. He is still kind and loving. He is still devoted to his family.

But, pondering his comment, maybe I understand.

After all, fueled by a stroke, Parkinson’s disease has robbed Joe of much more than his smile.

Joe used to play tennis, run, swim and exercise. He used to whistle, usher at Mass and cook big Sunday dinners. He used to take the grandkids to the bagel shop or Steak ‘n Shake. He used to attend their ballgames. He used to drive, stocking his glovebox with candy, gum and mints for them. He used to laugh and joke and socialize and give orders … not anymore.

He’s fatigued. Unwell. Bedridden mostly. He can’t attend the kids’ competitions. He can’t fish with them—even in our own backyard. He can’t play tennis—even with a toddler ... he just can’t.

Momentarily, I remembered the old Joe … the guy who whistled happy tunes when he walked in the door. How he’d offer hugs and jokes and funny stories of his day. How Friday was family pizza night and Saturday was date night.

Life is full of changes, though, and we’ve got to “roll with the punches,” as my mom used to say. Even so, it’s OK to grieve what you’ve lost.

I miss his whistling. I miss his decisiveness. I miss his jokes. I miss him planning beach trips and family vacations. I miss him paying bills and managing investments. I miss him driving. I miss him maintaining the car. I miss his quick wit. I miss our lively conversations.

But there’s much I still have—and love—about him.

I love that he is always here for me. I love that he never complains. I love that he still can give a nod, an affirmation or even a little input to the decisions I now must make. I love that he pauses before the Blessed Mother statue and prays, even if I forget. I love that he remains loyal to our Gospel Gab group.

I’m thankful he’s still alive, although I wish he wasn’t suffering. I’m thankful that post-stroke, he knew he couldn’t drive anymore … thankfully, it was never an issue.

I’m thankful he is always OK with the kids and grandkids coming, no matter how crappy he’s feeling.

I’m thankful he’s still strong for me, and when he endures sudden bouts of unnerving disorientation and overwhelming unwellness and I cry, I’m thankful he holds me close and keeps his tears inside.

So, yeah, I agree: I hope the kids don’t remember him this way—stuck in a recliner or sleeping in a bed.

Maybe it’s time l go buy a stash of gum and mints and candy for him to distribute.
 

(Debra Tomaselli writes from Altamonte Springs, Florida. She can be reached at dtomaselli@cfl.rr.com.) †