Family dynamics are the invisible force behind every caregiving journey

Still Mom

Her eyes are closed when I walk in, the corners of her mouth pulled down in a grimace so tight that I panic.

“Mom!” I yell, lurching forward inches from her face.  She flinches, and her eyes fly open and roll around before she fixes them on me.  I have startled her, and her brow furrows in what looks like pain, but I don’t really know because she can’t speak, or move.  I thought she was gone…I thought she was dead, and as the rush of cortisol washes over me, I think for the hundredth time, that I can’t believe it has come to this.

My mother is in the final stages of Alzheimer’s and Parkinson’s.   She spends her days in a wheelchair completely still as the small television across from her plays re-runs of Petticoat Junction and Green Acres at volume 12.  Her hands are like little shrimp, curled up tightly, and her feet are wrapped in cushiony slippers with a pillow keeping them slightly apart so they do not chafe.  She peers at me now, and waits for me to tell her who I am.

“It’s me, Paula, I say, your middle girl…Pure Joy…”  It’s this that tugs at her memory, this nickname that we have laughed over for so many years.  Certainly, I have brought her joy, but this tag was really used with a slightly ironic tone for the times I didn’t.  Like when I broke my pink cat-eye glasses in half because they wouldn’t slide easily over the sponge curlers she insisted I wear, or the time I was babysitting our neighbour’s kids and had boys in the house.  She uses all her energy to say, “Puh, puh,” and then closes her eyes.  Exhaustion?  Frustration?  So hard to know.

When I see that she’s not coming back for a while, I pull out The Jane Austen Society, the book I have been reading aloud on these morning visits, and settle in.

My mother loved to read.  And when I picture her in the house on South Bend Road West, where I grew up, it is most often at the end of a day when all her work was done, and she would sit quietly smoking her Peter Jacksons, drinking her tea, and reading.  She was never without a book.  Long lines at the bank with three young daughters in tow, swimming lessons one half hour after another were nothing, when she could lose herself in the latest Barbara Cartland or Danielle Steele romance.

Sometimes I feel like I understand her best when I am sitting with a book.  Our lives have always been oddly parallel:  like my mother, I have 3 children, 3 boys instead of girls, and I know how precious those moments were at the end of the day when I could finally lose myself temporarily in a story and a life that was not my own.

Years later, when I realized I hadn’t seen my mom with a book in hand, or she hadn’t dropped one off to me with a recommendation, I asked what she was currently reading.  Her answer stunned me to silence. “I don’t have time to read,” she said.

The ground shifted beneath my feet and I was so shocked that I had no answer.  And when I told my sister later that night, we laughed about what Mom could possibly be doing with her time, but deep down the truth teased at us, we just did not want to address it.

Every visit is a dance of me trying to find my mom, longing to make a connection.  I have sat for hours retelling every memory I can, pulling out the family stories sure to bring forth a smile or chuckle.  Remember?  Remember Mom?  Or flipping through photograph after photograph—look Mom, here we are in New York City, remember?  We saw Hairspray and laughed so hard.  And had dinner at Tavern on the Green with beautiful Chinese lanterns that lit up the night.  Remember, Mom?  How happy we were?  But even these stories and the most poignant of memories have lost their luster for her and she is fading…

I begin to read aloud and her eyes stay closed.  I’m not sure what language is to her now.  I’m not sure she can follow the story, but pray my voice is familiar and soothing to her.  Her eyes open and I  see her gaze intensify as she focuses on the cover of the book.   I hold it open so she can see the words on the page, and watch as her eyes scan from left to right.  This goes on for maybe one full minute, and then she closes her eyes.  I will never know what these words mean to her; the truth is I will never know what anything means to her anymore.  She is a closed book to me now.

I sit back and read to the end of chapter 6.  It’s 11:45 am and they will soon come to take my mother into the dining room to feed her.  I close the book quietly and place it on her night table.  Her eyes remain closed, and her breath is slow and even.  I decide not to wake her, and tiptoe quietly out the door.


All caregiving stories matter. Are you willing to share yours? Whether at the giving end of things or the receiving end–we want to hear from you. Just email me at: janevock@sehc.com.

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  • lisa borkovich
    Tue Jul 27 2021, 14:45
    Beautiful sharing Paula! Love the photograph. You are perfect bookends for all the great stories you’ve shared with one another.