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.

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7 thoughts on “now you see me, now you don’t”

  1. Unfortunately you often see this type of thing, it is not all staff but certainly some of them. I used to bite my tongue but after a while I decided to let the home know about how some staff behaved and suggested that some Professional Development is needed. In the same breath I always acknowledge staff members who are so good and who do their best to make our loved ones enjoy the best quality of life possible. However it is so important for us to continually visit – I go at different times so they never know when I may appear…

    They also know I watch how they interact with all of the residents


  2. I cried when I read this as I too have experienced it.Chillingly accurate in its descriptions.Our families are so vulnerable we need to keep highlighting this so we can keep them safe and give them the love dignity and respect they deserve.
    More training and awareness is needed .


    1. You are dead right Debbie. Seeing and hearing this kind of thing over and over again is one of the drivers behind my advocacy. And yes, you are absolutely right that more training and awareness is badly needed. Privacy issues notwithstanding, I support the installation of CCTV cameras for the protection of both residents and workers.


  3. Susan thanks for sharing this interview. Overuse of antipsychotics in NH’s on dementia PTs. is unacceptable! Here is the US Medicare penalizes facilities for using antipsychotics. They also lose a rating star on medicare’s NH compare site. Antipsychotics are necessary for some in certain circumstances but not on a regular basis for dementia patients. Looking forward to more of the series.


  4. Two-faced Nurse Ratched!

    At the root of it is a capitalist economy which refuses to value good health care, which I suspect is part of the problem. I am now training our third hired caregiver, after realizing that the first two were doing it because they were desperate for money.

    As much as I would like to help people who need jobs, I want the people looking after my parents to be doing it because they feel an affinity with the work and/or seniors, not because they find themselves out of a job and think it might be easy money.

    It’s not easy; it requires compassion, patience, kindness, tolerance and open-mindedness, along with a knowledge of dementia and how the condition progresses. Is that asking too much for $12/hour? Well, I’m doing it for free, so I’m the wrong person to ask.

    Let’s ask Nurse Ratched what she wanted to be when she grew up, shall we? I’m betting she didn’t want to be in this position. Most people in our society are bullied and bitter by the time they near retirement. So sad.

    Thanks, Susan. Excellent post, as always. Forgive my ranting…


    1. Lorrie,

      re: “It’s not easy; it requires compassion, patience, kindness, tolerance and open-mindedness, along with a knowledge of dementia and how the condition progresses.”

      You hit the nail on the head. And people with these qualities, skills, and training are extremely difficult to find – I know from experience! Mom and I were lucky enough to work with a young woman who was dedicated to providing exceptional person-centred care. She was with us for a year before Mom was unfortunately placed in a facility. Mom also had other outstanding one-on-one caregivers; they are rare gems as you are finding out know. When you find a good one hold on to her or him for dear life.

      You can rant away any time – I know where you’re coming from 😦


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