the day our best wasn’t good enough

November 16, 2012: I took the photograph before nine; I know for sure because Caroline was never late. In it, Mom stands like a ghost in the back doorway, peering from the inside out. She’s already knocked several times on the window – an impatient signal for me to join her.

The hood of her white winter coat is pulled up over the silly tuque (also white) that causes me to giggle every time she puts it on because it makes her look like an alien. She picked it out herself on a shopping expedition with Caroline and she thinks it’s lovely. Her fuchsia-gloved hands are at her sides next to her pocket sockets.

I’m out and she’s in because she awoke, got up and came downstairs during my crack-of-dawn photo shoot. Maybe she felt something was wrong. I saw her through the window and went back into the house, bundled her up and dragged her outside with me so I could  continue capturing the morning glory. She quickly tired of the adventure and wanted to go in. Who could blame her? Outside is was a bone-chilling mid-November day, the 16^th to be exact; inside her big brick house it was warm and cosy. Why in the world would she want to be anywhere else? I snapped a dozen more images including several of her phantom-like behind the gingerbread screen door and the glass. Then I pocketed my iPhone and shivered, but not from the cold.

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Caroline walked through the front door at 9 a.m. sharp as usual. She had tears in her eyes.

“I don’t know if I can do this Punkie,” she said.

“I know Big Bird.” I reached up. She bent over. We hugged. Caroline is close to six feet tall; Mom looked like a peanut beside her. But the unlikely pair had grown as close as any two people could possibly be. Had I not loved Caroline too, I might have been jealous. In fact, it was a privilege to witness to the joy they found in each other whenever they were together. During the previous year, Mom had crawled into bed with me most mornings with the same questions:

“Is Caroline coming today Punkie?”

“Yes Mom, she’ll be here at 9 o’clock.” I answered if it were a weekday.

“Oh. That’s good eh Punk?”

“Yeah. We love Caroline Mom. She’s an angel.”

“Yeah. She’s a good girl that Caroline. How long before 9 o’clock Punk?”

“Let me see Mom. It’s six now, so she’ll be here in three hours. That’s not too long. Why don’t you try to go back to sleep until then?”

“Okay. I’ll try.” And sometimes she did. But on November 16, 2012, Caroline found us downstairs in the kitchen instead of snuggled up in bed.

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Both Caroline and I had been pretty messed-up for several weeks. Lots of tears. Lots of hugs. Lots of wishing things were different. Sadly, they weren’t. We were exhausted, drained, at the end of our proverbial ropes. Together, we had cared for Mom for a year with only occasional support from a couple of other outside caregivers. We were emotionally and physically spent.

Had I known then what I know now, I believe I could have reduced the strain on all of us. But I didn’t. I learned a great deal during that year, but I’ve discovered a lot more since. To properly care for someone with Alzheimer’s disease in their own home without someone having a breakdown of some kind requires a team of five or six care partners working in shifts. We were two, and I was powerless to change things.

But we loved her, we loved each other and we did the best we could. We forged a magical three-way bond right from the start: a triad of women of different ages with differing challenges pulled together unexpectedly by the disease of the eldest. Our year-long journey was a hugely enriching gift in many ways. This was the day it would come to an end. Caroline and I despaired at the thought of Mom leaving her home of forty years, where she was surrounded by the things she cherished, to live in an unfamiliar place filled with strangers. On top of everything, we were devastated by what we were about to do. She didn’t know. We hadn’t told her. To her this day was a day like any other.

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We had breakfast together as we often did, then Caroline took Mom upstairs to help her shower and get dressed. When they came back down, Mom looked beautiful. Her short-ish silver white hair was slightly wavy. Caroline and she had chosen a purple turtleneck and matching corduroy trousers. Her favourite ski medal sat dead center under her chin. The silver filigree slipper and chain I got her at the suq in Marrakesh hung just above her Christmas tree lights necklace. She had on her flower petal rings and her watch.

She and Caroline played catch in the kitchen with a squeegee rubber toy, and her pink bangles tinkled as she moved. They sang “You Are My Sunshine.” I shot some video. Caroline carefully did Mom’s nails at the kitchen table just as she had done virtually every weekday for a year. It would be the last time. In the midst of the manicure, Caroline reached for a tissue and blew her nose. Mom blew her nose too. Caroline seemed to have something in her eye. Mom didn’t notice, but I did.

I made them pose in the middle of the kitchen and froze them in time: two fast friends more than fifty years apart in age laughing, clowning and singing like a couple of schoolgirls. Aside from the misty eyes I saw and Mom didn’t, Caroline didn’t give away a thing. They were simply gorgeous in those last moments on that last day.

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“I’m taking you for lunch and then we’re going to go shopping Madam. Okay with you?” Caroline said to Mom at around noon.

“That’ll be a nice treat,” Mom’s face lit up; she turned to me, “Are you coming too Punkie?”

“Not today Mom. I have a few things to do. I’ll see you later, okay?” I had a hard time forcing the words out while holding the tears at bay.

“Okay dear,” Mom felt safe going with Caroline. “We won’t be long.” She trusted us. We were her family, one daughter born of the flesh, the other of the spirit. She didn’t know that once she walked out the door she would never return to this home again. But we knew.

I watched them make their way out to the car, Mom in her rust-red coat this time, not the white one. She had on her beloved pink tam. Neither of them looked back. But for some reason, I waved. When they were finally out of the driveway and onto the road, I turned and felt the big wooden door support me from behind as I slid to the floor. I sat there alone for a long time just letting tears roll in rivers down my face.

We did our best. But in the end it wasn’t enough. Anyone who has been through this will know what I mean. Every November 16, I cry again. For all of us and for everything we could and couldn’t do.

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November 16, 2017:

https://myalzheimersstory.com/2017/11/15/when-youre-put-behind-bars/

November 16, 2015:

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

November 16, 2012:

https://myalzheimersstory.com/2012/11/16/moving-day/

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