This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The other vignettes in the series are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. Unlike the other vignettes, this one is told by me, Susan; it features my mom Patty, who died on August 17,2016. See the other vignettes from Annie’s eyes here.
it’s not a cornflake
It’s Christmas Day 2013. I’ve brought Mom to the safe haven of my home for a quiet day together. “Owwwww,” she says, and winces when she sits in her favourite chair. She squirms in an effort to get comfortable, her face a grimace of pain.
“What is it Mom?” I ask.
“It hurts,” she says. “It hurts.” Mom has complained of pain for about a week. “Something’s wrong with my insides,” she says. Or, “My tummy hurts.” When I ask her to show me where, she puts her hands between her legs.
“Mom says she has pain in her groin,” I relay to whomever the charge nurse is when I’m at the place I would came to call “ElderJail.”
I visit Mom for two or three hours each day, but I’m not the one in legal control of her affairs, and I’ve been told in no uncertain terms that I am NOT to ask questions or make observations about her care. But she is in such obvious discomfort, I am unable stay silent and watch her suffer without saying something.
“Oh?” whichever nurse is on duty invariably answers. “I’ll make a note of it.”
When I arrive at the facility on Christmas Eve, I find Mom at the table in the kitchenette that serves as a dining room for the “lockdown” residents. Unusually, the charge nurse, DeeDee, is feeding another resident, Camille, across the table from Mom. Feeding is a duty normally performed by the care workers (CNAs/PCWs). Probably short staffed. I sit down at my mother’s side. “How are you Mom?” It’s my standard greeting.
“Not so good, Punk,” she says.
“Do you have any pain Mom?” Also standard.
“Yes, right here,” she replies putting her hand in her lap. I look over at the nurse. “Did you hear that, DeeDee?” I ask to confirm what I had shared with her the day before, and with her colleagues in the days before that. Nurse DeeDee lifts a puree-filled spoon to Camille’s lips and says: “I’ll make a note of it in the book.” I sigh, and turn my attention back to Mom.
That was yesterday. Now, today, Christmas Day, at my place, Mom is still visibly in pain.
“Something’s wrong. It hurts,” Mom repeats. She squiggles around in the armchair, winces again, clutches the armrests and pushes, lifts her bottom up from the seat, sucks in her breath, holds it. I hadn’t been able to do anything about her complaints while we were at the facility, other than to talk to the walls, but this is my home, it’s just Mom and me, and I’m free to do as I wish.
“Do you want me to look Mom? Maybe I can see what’s the matter,” I offer while Celine Dion sings These Are the Special Times in the background.
“We need to do something,” she says. “Because I can’t go on like this.”
We shuffle into my bedroom where I’ve placed a low single bed at the foot of my much higher king so Mom doesn’t have to sleep in a chair when she’s tired during a visit. I fetch a pair of medical gloves, which I have on hand for changing her incontinence briefs, and put a pink towel on top of the white duvet on the bed. She takes her pants off; I help with the brief, and she lays down. She has barely opened her legs when I spot something thin, dark and undoubtedly foreign within the folds of her flesh. What the hell is that? I pinch whatever it is between my thumb and forefinger and gently extract it.
“Ouch!” Mom cries.
It looks like a cornflake. I squeeze it; it doesn’t break. Not a cornflake. It’s about an inch long and three-quarters of an inch wide, perfectly curved and smooth on one side, rough and knobbly on the other. I roll it around in my fingers: the hard cornflake-like thing has jagged, razor-sharp edges.
Tears well up in my eyes. Poor Mom. This whatever-it-is has been lacerating her vagina for days. A rush of anger dries the tears as quickly as the thought of her pain prompted them. I grab my iPhone from the top of the dresser, tap the camera icon, slide to video and press the red record button.
Postscript: I was never told what the cornflake might have been. Six weeks after the incident, the Director of Nursing testified in court that they hadn’t had it tested to see what it was.
- “Asks or complains about her health, even though it is unjustified” is #17 on the NHBPS
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©2017 Susan Macaulay / MyAlzheimersStory.com / This story with preamble and epilogue was originally published here.
6 thoughts on “it’s not a cornflake”
My mom would complain of pain or become agitated which would indicate that something needed to be addressed. Sometimes the staff were very on top of things and would have her checked out and other times they would come up with ridiculous defensive explanations. I would email the nursing directs and owner of the home and cc my sisters . That written record of a concern or complaint always got action.
Thanks for your comment Judy. In my experience the quality of care depends directly on the individual delivering it – same as any other kind of service. Mostly my mother’s complaints and my complaints and issues with respect to her being sedated with antipsychotic drugs were ignored. Unfortunately I was not the one in control of her care, and the person who was was not interested in my opinion or expertise. I have binders full of documentation. I’m glad you had better luck than I ❤
Oh I am so sad this happened. EVERYONE deserves the respect and attention when they say something hurts. Sometimes it may be nothing; but in most cases there is something. Bless you for sharing and making people aware how important it is to LISTEN to everyone; no matter what disease they are battling.
“EVERYONE deserves the respect and attention when they say something hurts.”
So true Tracy – we all need to be listened to.
How is this legal?!