Care Partnering, Life & Living

she hasn’t changed a bit

Mom and I on October 20, 2012, the last time we golfed together. We made the most of the stunning fall day. I will remember it until I don’t.

Flashback June 26, 2015: “You have a cold Mom,” I say. Her nose is running. Every four or five minutes she coughs – a scary wet sound that emanates from the deep recesses of her lungs.

“Yeah. I have a little cold,” her voice is a hoarse whisper. “It’ll be better soon.” Between coughs, she puts her hands on the sides of the wheelchair and uses her arms to lift herself ever so slightly off the seat; she edges herself forward. She’s trying to get up. She has a simple strategy: repeat the slow rocking maneuver several times, then make an all-out attempt to stand.

I watch and wait. Sometimes she can get upright on her own. Other times she needs my help. Either way she must now hold my hands to walk; without support she loses her balance and topples over. She pauses, covers her mouth with one hand and coughs again. I wince. She goes back to rocking. She’s almost there.

I grab the green plastic box that hangs from the wheelchair handle and loop its short strap around my wrist. The unwieldy piece of equipment is a little bigger than a pound of butter; it has a button that says “reset.” The box is part of a two-component alarm system that also comprises a portable pressure pad upon which Mom sits or lies. As soon as she lifts her bottom off the pad, the box plays a tonal version of You Are My Sunshine until someone pushes the reset button. It’s hard to hit reset while holding both the box and Mom’s hand. The pain-in-the-ass procedure is one of the reasons I’ve grown to hate You Are My Sunshine; the other reasons mostly have to do with Pavlov’s dog.

I detest that Mom is confined to wheelchairs, recliners and her bed. So does she. I wonder how many times a day she tries to get up? I bet she too has grown to despise You Are My Sunshine. We are two warriors unaccustomed to white flags who are surrendering none-to-gracefully  to destiny and life. It occurs to me that freedom is a high price to pay for the illusion of safety and savings, and easier to sacrifice when it’s not your own. I banish the thought and focus on gratitude instead.

We’re outside on a spectacular summer day. The sky is blue. The trees are green. Potted flowers line the deck. Life is good. Mom is wearing the beige Capris I got her in spring 2012, and it’s warm enough for short sleeves and no sweaters. Every moment counts.

Each of Mom’s forearms sports a fresh wound. The transparent dressings that cover them reveal quarter-sized pools of bright red blood and caramel-coloured fluid. Her paper-thin skin rips and tears at the least insult. A dark lump the size and colour of a small plum–also covered with a clear dressing–rises on the front of her left leg halfway between her knee and ankle. The blood will eventually seep back into her flesh and the bump will disappear if all goes well. Spidery webs of faint whitish scars snake around her arms and legs. She has sandals on, no socks. Her toes are light purple.

One day while we were golfing a few years ago, she caught the bottom of her spiked right shoe on her left shin and carved an L-shaped swath into it. The resulting triangle of detached skin flapped around like a sail in the wind. I thought it would never stop bleeding.

“Don’t worry Punkie.” Mom remained unfazed as I tried to stanch the flow with a golf towel. The mark from that episode is more noticeable than the others. It’s beside the plummy lump.

I look at her profile as I sit at the ready. Her eyes gaze downward. Hands on wheelchair arms, her own arms bent at the elbows. She’s going for it this time. A thin line of watery snot runs from her nose to the top of her upper lip. She’s oblivious to it. I’ll get her a tissue later.

Despite everything, I can’t help but smile. In many ways she hasn’t changed a bit.

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10 thoughts on “she hasn’t changed a bit”

    1. Yes, she is strong and determined.

      I paused at “these traits continue to serve her well.” I wonder if they serve her, or if they are serving a larger purpose. It’s a question I gnaw on like a dog does a bone…


      1. My experience is that I go through challenges, setbacks, heartache and suffering for purposes that are not known to me until after – sometimes LONG after – the struggle is over. Thus: some things are meant to be

        Somebody commented to me this past week that Mom wouldn’t still be here if it weren’t for me. That my care and support are extending her life. Is that a good, bad or neutral thing? Would she be better off in “the next life?”

        Over the years I’ve had people say to me they would prefer to be shot than to get dementia…

        I just got back from being with her for an hour. It was a very good day. Her “old self” was very much in evidence clearly. Her essence shone through brilliantly, on other days not so much. But change and challenges are part of all of life, whether we live with illness or not.

        These are things I think about. Existential questions to which there may or may not be answers.


      2. Got it now. You could have been meaning several different things and now I understand. Yes the question of are you prolonging her life and if so is that a good things or not is something to contemplate. When my mother was first diagnosed she clearly stated she didn’t want to go through this disease and live in the classic Alzheimer’s state. But she is no longer able to make decisions like this anymore for herself. What would she want is a big question, but none to which there are answers.


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