Moving – My Alzheimer's Story

Care Partnering, Life & Living, Love, Memories

the day our best wasn’t good enough

November 16, 2016November 15, 2018 My Alzheimer's Story

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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Care Partnering, Joy, Life & Living, Love, Memories

the cosmos and coming full circle

June 25, 2014June 21, 2017 My Alzheimer's Story

June 25, 2014: We start halfway down the long side of the sun porch, and inch our way west toward the stone’s-throw-away village center and the lake not far beyond, both of which may as well be part of another solar system. In her heyday Mom knew the village population and the length of the lake as well as the price per linear foot for property directly on its shore. She could quote in a heartbeat what might be got or paid for a house in the countryside beyond.

“What’s your budget?” she would ask potential clients soon into telephone conversations generated by her newspaper ads. It was a quick way to separate the wheat from the chaff.

This afternoon our world is contained by the elbow-high white metal fence around The Home’s 20 meter by 15 meter sun porch, which in turn is surrounded by a mix of deciduous and fir trees. A little like Noah’s ark, the porch is populated by things in twos: the two of us, two tables and their shading umbrellas, and an assortment of two dozen or so chairs, some around the tables, others scattered about in pairs.

Mom is able to get up from her wheelchair on her own today. From her clearer eyes, more alert demeanor and ability to “walk” I feel she must be getting less anti-psychotic medication lately. We make the most of the opportunity. She puts her right hand in my left. At first she holds it firmly, her fingers wound around my own; I keep mine open, light and responsive. I notice how soft and cool her skin is, like the breeze on my cheek.

I guide her to the fence. She reaches her left hand toward it, as someone would feel for something in the dark when they know it’s there but aren’t quite sure exactly where. It’s one of the signs the way she “sees” things is changing. She focuses on moving forward. I focus on her. This is our universe. I listen with my hand for the barely noticeable changes in pressure that indicate what she needs from me. I close my fingers a little around hers when she squeezes mine, then loosen them again when hers relax. It’s important that she feel as competent, capable and independent as possible. She takes a step. And then another.

“You’re doing great Mom,” I say.

“I hope so,” she replies. A pause and then: “I wish I could do better.”

“You’re doing great Mom,” I repeat.

“Thank you,” she says. I’m amazed and grateful when these thoughts and sentences emerge fully formed from her Alzheimer’s fog. It reminds me she’s still in there, hidden most of the time, but in there nevertheless. I uncurl my fingers again when hers lighten, lift and float just above my open palm. She walks alone for a few steps, leading herself down the metal railing with her left hand. Fat plastic planters alive with colour interrupt the relatively thin line of the fence every few feet. I enclose her hand gently as we approach the first one.

“Aren’t those beautiful flowers in the planter Mom?” It’s an “obstacle-ahead” warning disguised as a question so she doesn’t falter when her hand arrives at the planter.

“Yes, beautiful flowers,” she repeats. Her eyes are fixed and angled toward the ground nowhere near the blooms. Parroting is her way of carrying on a conversation. Whether she actually sees or understands is irrelevant. The fact that she’s engaged with life is what counts.

“These purple ones are lovely,” I say when we get there. “And look, here’s a pink geranium. Your favourite.”

“A pink geranium,” she echoes. We’re stopped now.

“I can’t remember the name of this mauve one Mom. You have them in your garden, but I can’t remember the name…” I search my own faltering memory.

“I don’t know,” she says.

“Cosmos.” It comes back to me. “It’s a Cosmos. I wonder if it smells?” She’s very close to the edge of the planter; a single Cosmos stretches toward her. She bends into the flower’s center and sniffs.

“Yes, it smells nice.” When she pulls back she has a dusting of yellow pollen on the end of her nose. I laugh and blow it off. She squinches her eyes a bit. I forgot to warn her.

“You’re nose was yellow Mom!”

“It was?”

“Yeah!” I laugh. I smell the Cosmos too. It doesn’t smell of anything to me.

We continue our expedition, punctuating it with stops at each of the planters where we replay variations of the same conversation over and over again. When we walk Mom is intent on putting one foot in front of the other. Just as we all are in different ways at different stages in our lives. At this time, for her, each step is a marathon requiring her full attention. I espy a black cat sunning on the lawn below. I point him out.

“He’s not doing much of anything,” she says. I wonder if she has really seen the cat or if it’s a random good guess. She’s pretty good at good guesses despite her dementia. She’s also great at filling in the blanks once I supply her with the words to do so. Eventually we get to the wooden birdhouse in which chickadees have been nesting. Last week I watched the parents fly back and forth with food, and heard the youngsters make hungry noises inside. Now the house is quiet. There’s no flutter of parental wings or youthful chirping to be enjoyed. The family has flown the coop.

“The chickadees are gone Mom. There were babies in the birdhouse, but they’re gone now.”

“Oh dear.”

“It’s okay Mom, they learned how to fly. Now they’re out exploring.”

“That’s nice.”

We’re almost back to where we started halfway down the long side of the porch’s perimeter. The sky remains infinitely blue and cloudless. The trees, the fence and the flowers create a border around a world that expands and contracts like we do as we breathe it in and out. This is our universe today. It’s taken us twenty-five joyful minutes and two roller coaster lifetimes to come full circle.

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Humour, Joy, Love, Music

pinkie patti will get a kick out of this

May 12, 2014June 3, 2017 My Alzheimer's Story

May 12, 2014: Mom loved to dance. Even now, when she can barely walk, she and I do our own Alzheimer’s version of a two step. Tomorrow I will show her this video – it’s just the kind of thing she would find funny.

Although most of her sense of humour has disappeared along with much of the rest of her, I can sometimes coax a smile or the hint of a laugh from somewhere deep inside. I hope the video will elicit a smile on her face, even a small one. If it doesn’t, it’s okay. Because I know it will produce joy in her heart.

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Care Partnering, Life & Living, Love, Memories

moving day

November 16, 2012November 16, 2019 My Alzheimer's Story

November 16, 2012: Today is moving day. My Mom Pinkie Patti leaves her home of forty years to go into another kind of “home.”

The kind you go to when you don’t know where you’re going or what you’re doing anymore. And she doesn’t. She won’t know when she opens her eyes this morning that it will be the last time she’ll cast them on the sunlight streaming through her bedroom window.

Dawn is just about to break, the sky is streaked with pink and blue, and a light frost coats the trees and fallen leaves all around the house. She didn’t know yesterday it would be the last time she would enjoy breakfast in her kitchen, clean her counter tops, or stare into the crackling flames in her fireplace. These small joys will belong to someone else someday, someone who may never know how much each of them once meant to Patti.

She doesn’t know she won’t dance in the goldenrod in her field again, or swim naked with me in the lake or walk in the winter wonderland behind her house a Christmas. Somehow the fact that she doesn’t know seems to make her imminent departure more tragic. But none of us know when we’re going to leave the life we’re living. We may be snatched away at any moment, with no inkling the breath before was to be our last. It can happen at nine months, nine seasons or ninety-nine years.

To coin and combine two old cliches: that ignorance is bliss may be a blessing in disguise. Unlike me, who has cried a million tears, Pinkie Patti hasn’t spent the last minutes, hours, days and weeks mourning the loss of her life as she knows it. She has lived it.

She hasn’t worried about saying goodbye to all that is familiar to her, including her beloved cat Pia Roma. I wonder how Pinkie Patti will be in her new home. Mercifully, and ironically, because of Alzheimer’s disease she will forget this one before long.

She will forget all the joys and sorrows with which we have infused its three-bricks-thick walls. But life will still live here; it will be re-awakened by others at some future time. And Pinkie Patti will create new joys, sorrows in her new place before one day saying goodbye and leaving for her final destination.

As for moving on, there’s comfort in knowing that, in the end, no matter how far and wide we travel, and for how long, all roads eventually take us home.

And in that sense, every day is moving day.