the day our best wasn’t good enough

20

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.

121216-mom-in-door-upright-croppedThe 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 16th 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.

~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

This slideshow requires JavaScript.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“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.

This slideshow requires JavaScript.

Subscribe to my free updates.

20 Comments

  1. As you know, I have walked that same path-felt that same angst-cried those same tears- felt the same guilt. God bless you today-especially today- because I know how hard it is-it is a hurt that never really goes away. The hurt abates a bit-but it is always there in the background lurking-waiting for a memory jog to bring it front and center.

    Your mom is safe. She is free from dementia. She is free from pain. She is free from the constraints placed on her here. I know this isn’t much help but I hope it gives you some measure of comfort –knowing that. xo Diana

    • This is so sad, but very true for many. Wives go through this as well and they feel very very guilty. We do a family support group here for this very reason. I have found that families get acquainted and are supportive of each other. This is the hardest decision families ever have to make. Thank you so much for sharing. Blessings

      • Thanks Linda, and thanks for the work you do helping families. Few people want to put their loved ones in long-term care facilities many of which are more like “elder jail” than places of care and compassion 🙁

  2. Oh my God that’s heart-wrenching Susan. I’m having a hard time typing through the tears and my throat is closing over fighting the sob that wants to burst through. What a tough day that must have been. You’re so right about the team of care givers required for 24/7 care and when it’s a family member who is the main care giver they’re often forgotten about in the grand scheme of things. I think being a good daughter (the question you asked in your last blog) is realizing when a change in who provides round the clock care will be best for both you and your mom.

    Sending lots of comforting thoughts and warm virtual hugs on this difficult day, Anne

    • Thanks Anne for your kind words, which I particularly appreciate from such a talented writer!

      Had the choice been mine, Mom would have stayed in her house with the kind of team that was required for 24/7 personal care. But the choice wasn’t mine, which made events even more devastating for me. Being powerless as you watch someone you love suffer is real torture as millions know having gone through it themselves. Maybe you have too… But somehow we keep going. Even more amazing is somehow we also find joy.

  3. my father died from alzheimer’s. it was a sad day when i went to visit him in california, a few months before he went into the facility and he didn’t know who i was.

    but just because he couldn’t remember me didn’t stop him from remembering how to get to the first pizza parlor in roseville [which had closed a year before, which was the last time he and my mom had gone there], nor did he stop remembering how to meander through the streets of roseville to the second pizza parlor, where i got the pizza that he and my mom ate.

    and by the time i left them, he remembered who i was, as usual he tried to slip $20 in my pocket to pay for gasoline, as usual my mom complained loudly because he tried to slip me the money, and as usual he was — simply — my wonderful dad — albeit for a few brief months before his mind decided to go on its own journey for the next two years.

    treasure the moments.

    that’s all i can think of to say.

    blessings to all,

    • Thanks for your thoughts Annie. Yes, treasuring the moments is exactly what’s needed for all of us all the time. Life is so fragile.

      Thank you for sharing that lovely story about your Dad. In my experience, Alzheimer’s is not at all linear and there can be amazing moments of clarity amidst the chaos. It’s so great you have the wonderful memory of him <3

      XOX Susan

  4. Difficult anniversary Susan but beautifully written and it made me so sad. Remember the house well and how much she loved home. You are a very strong woman Susan and I commend you. With love and prayers. jc

  5. Hi My Precious,

    This is both agonizing and exquisitely beautiful. I love you and I’m sending thoughts of strength, comfort and support your way.

  6. My heart is breaking for all of you on this sad day. You did your best to take care of your Mom in her home but it is very hard doing all that caretaking without plenty of additional outside help. I”ll be thinking of all 3 of you tonight. Take care.

Leave a Reply

%d bloggers like this: