Advocacy, Fiction, Toward better care

now you see me, now you don’t

Winter 2014


The warning travels past its intended recipient down the hall, around the corner and into the living room where I’m transferring Mom from an armchair into a wheelchair. I’ve heard gentler “Achtungs” from soldiers in Frankfurt airport, I think to myself as I prepare to take Mom up to the dementia floor for supper.

Mom used to enjoy her meals with her friend Gaby in the main dining room, but then the staff said she was “difficult to manage,” always wanting to get up and walk around, so she has to eat in the dementia ward where people are fed instead of feeding themselves, and everything is uniformly creamy in texture. The only way to tell the carrots from the peas, potatoes or meat is the colour. I often wonder if the dollops of orange, green, white and grey glop taste any different one from the other, but I can’t bring herself to test them. My stomach flips at the thought.

“Hannah!” The voice is angrier this time; it belongs to the one I mentally call Nurse Ratched. “Don’t touch!!”

“I was repairing it–” Hannah, who is in the mid-stages of dementia attempts to justify whatever it is she has done to get on Ratched’s rather broad bad side.

“You weren’t repairing it!” You were erasing it!” Ratched scolds.

“No, I–” Hannah tries again.

“Give me that!” Nurse Ratched commands. “Go and sit down!”

I have no idea what precipitated the exchange, but I often hears Ratched and her colleagues speak to residents like bad parents do their ill-behaved children.

“No Agnes, I’m busy. You’ll have to wait,” to the 96-year-old with rouge on her cheeks as she stands by the nurses’ station with her walker.

“You can’t have more now, you just finished one,” to rail-thin Diane who constantly opens cupboards in search of a drink.

“You’ll just have to deal with it,” when Elizabeth, who’s body seems to be tied up in painful knots, complains of not being able to breathe.

I know the kind of treatment Mom gets when I’m not there is the same kind I see and hear doled out to others when I visit. Worse than the words is the delivery: almost invariably in that tone. The one that would make you want to smack anyone who used it on you. It’s why Mom is being sedated for aggressive behaviour. She went beyond wanting to give them a smack; she went ahead and did it. Along with their memories and the ability to process things like the rest of us, people who live with Alzheimer’s disease leave social graces behind. They say what they mean and act how they feel, often to the chagrin of those on the receiving end of their frank comments and unfiltered reactions.

I put one hand behind Mom’s left knee and lift her foot onto the footrest with the other. Mom’s legs are full of bruises, bandages and band-aids; they stem the Coumadin tide. I repeat the process with the left foot, and then kick free the wheel locks. It’s 4:45 p.m.; dinner is at 5. The main floor dining room is next to the living room where Mom, Gaby and I have been for the last hour and a half drinking tea, singing songs and talking nonsense. Gaby left a few minutes earlier under her own steam.

Apparently, Nurse Ratched doesn’t know Mom and I are in the living room within earshot.

“Hannah! I said go and sit down!” she snaps again.

Meanwhile, Mom and I are in motion. We roll out of the living room and around the corner into the hall where 90-year-old Hannah’s back comes into view. She’s leaning on her walker about 15 feet away, next to the big white board on which the month’s activities are written: Tuesday afternoon: bingo; Thursday morning: sing-along; Sunday afternoon: religious service; “Phyllis’ birthday” has a green squiggle around it on the 28th.

Nurse Ratched is a few paces beyond Hannah. “She erased the six from the 26th on the calendar,” Ratched complains, presumably to another staff member in the dining room; the reply to her complaint is unintelligible from where we are. Then Ratched turns around, and sees Mom and I heading down the hall toward her.

The transformation is astonishing. Ratched closes the gap between herself and Hannah, and, without skipping a beat, puts her arm around Hannah’s shoulder. She leans in gentle and close, and says just loud enough for me to hear, “It’s time for dinner my love, would you like to go in and sit down please?” Her voice is soft, golden, liquid honey.

I hold my tongue. I’m already in enough trouble. Mom and I squeeze past Hannah and Ratched and into the elevator bound for higher ground.

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

Care Partnering, Hope, Joy, Love

against all odds, despite everything


March 16, 2015: Mom’s hands nestle in the cradles of mine. Her touch is light. She puts one foot in front of the other with hardly any hesitation. As she steps forward, I step back – watching, feeling, sensing.

“You’re walking so well today Mom,” I observe.

“Yeah I’ll be walking right right right right right right right right right RIGHT!” She builds to a crescendo.

“Yes,” I chuckle. “That was quite a few rights, Mom.”

“Yeah I know,” she agrees. We stop talking. Focus on taking a few steps. Then a few more.

“You’re practically walking on your own,” I say.

“Yeah, I am.” I love her ferocity. I’m glad it lives in me. It will remind me of her when she’s gone.

“You saw what I was writing,” she says.

“What?” How does she know these things? It blows my mind.

“You saw what I was writing.”

“I did,” I agree. I match her steps ahead with my own in reverse. We advance and retreat for several short, steady paces.

“You saw I was writing books,” she continues.

“You were writing books?”


“Wow! Do you know what the title is going to be?”


“Do you have any ideas about what the title is going to be?”

“Yeah. I went with ideas,” she says.

“Good,” I say. “That sounds like a good title: ‘Mom’s Ideas.”

“Mom’s Ideas,” she parrots. Her hands remain like feathers in mine. Her feet are firm on the floor. Her legs are solid.

“How do you feel?” I check in.

“Feel fine,” she says without a doubt.

“Do you wanna keep walking?”

“Yeah. I wanna keep walking.” Unequivocal again. I decide to double check anyway.

“Do you want to sit down?”

“No,” she says.

“Okay, let’s keep walking then.”

“I want to go with you,” she says.

“Pardon me?”

“I want to go with you.”

“I know you do,” I say. My voice cracks a little.

“‘Cause I like you to to to to to…” She can’t quite find the words.

“To what Mom?”

“To to to to to to to to….do the skating with me.” I laugh. Then she laughs too. We share the absurdity of the situation and the fact that skating has everything and nothing to do with this moment in this place at this time.

“We’ll go skating. Like a couple of ducks on a pond,” I kid with her. She doesn’t know I wrote about her storytelling to my younger cousins when they were little girls. Yet somehow she does. Another dip into intuitive clairvoyance.

“Yeah, like on a pond,” she goes with it. We glide along imaginary ice instead of getting stuck on worn wooden floorboards.

“Okay,” I say. “Let’s keep rolling.”

And we do. Against all odds. Despite everything.

March 16, 2015

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.