It’s one thing to see someone when they are sedated. It’s quite another to see the sedation taking effect, and the person who doesn’t wish to be sedated trying to fight it off.
Against my wishes and against her will, my mom was sedated with quetiapine at breakfast every day for almost four years. The dose she was given knocked her out cold for several hours. She got another debilitating dose in the evening. They also gave her risperidone twice each day. This drug regimen was an abuse of her human rights.
I had incontrovertible proof that non-pharmacological strategies improved the quality of Mom’s life, and, should they have been fully implemented would have eliminated the “need” to inappropriately sedate her with quetiapine and risperidone. I repeatedly voiced my concerns and shared my evidence. I was ignored, and branded a troublemaker.
It took 45 minutes to an hour for the quetiapine to take full effect. Sometimes, during that window, I would pick Mom up at her Dementia Jail and take her to my house so that when she woke up three or four hours later, we could spend some quality time together.
This is what Mom’s experience looked like during the last five minutes or so before she fell “asleep:”
My mother, who lived with dementia, was chemically and physically restrained every day for the forty-five months she lived in a dementia jail (aka a long-term care facility or nursing home).
These restraints could have been avoided if the medical personnel in charge of her care had addressed the root causes of the behaviours they found challenging in her. All they needed to do was to take a closer look at what was going on around Mom. If I could do it, surely they should have been able to.
When Mom was sedated, she was unable to do things she loved to do such as walking and singing. Here she is not singing (because she had been sedated an hour or so before), at some of the weekly sing-alongs conducted by volunteers at the place she resided:
Besides cruelly sedating her with antipsychotic drugs, no one who was involved with my mother’s care listened to my request to provide her with music therapy. So I hired a music therapist myself and the three of us enjoyed many happy afternoons together after the worst sedative effects of the chemical restraints had worn off. Here’s an example of one of those wonderful sessions:
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If you don’t have proof, you won’t be believed. Sometimes, even if you DO have proof, you are not believed.
I learned that when I went to court to try to get control of my mother’s care in early 2014. I had lots of proof, but I still lost. I was devastated. But the loss didn’t stop me from documenting the neglect and abuse my mother continued to suffer until her death in August 2016.
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My mom was a go-getter, she loved to be on the move. Even when she had been living with advancing Alzheimer disease for several years, she told me clearly and directly that she wanted to “keep going.” That was her way. She didn’t want to be sitting and sleeping and missing out on living.
Sadly, Mom didn’t get to live the life she wanted in the end.
When she was moved into a Dementia Jail (aka “nursing home” or “long-term care facility”) in November 2012, her “get up and go” behaviour and her feistiness were challenging for the staff. Instead of finding ways to make the most of her energy, the medical personnel in charge of her care inappropriately prescribed increasing amounts of antipsychotic drugs to chemically restrain her. The drugs caused her to become unsteady on her feet and she started to fall. Instead of reducing the drugs to prevent the falls, they physically restrained her.
If that wasn’t bad enough, her basic care and hygiene needs were often not met. When I went to visit her, which was virtually ever day for four years, the first thing I did was to take her to the bathroom, where, more frequently than not, I would find that her incontinence brief needed to be changed, so I would change it myself.
Here are twenty-five pictures I took during 2013 as I gathered evidence to prove the neglect and abuse I witnessed every day:
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Emily Gagnon is a hospice nurse. She lives in Waterdown, Ontario. Her Facebook post to mark the end of National Nurses’ Week 2020 brought me to tears:
“As we wrap up National Nurses Week 2020, I’d like to share a little bit about what I do as a hospice nurse. For those of you who are not familiar, hospice is a facility where people come to live out the remainder of their days. Many of the residents that I care for have a terminal and/or life limiting illness with limited time left to live.
What I love most about hospice is watching the residents and their families surrender all of the burden they carry and make the best of the time that they have left. In my three years of practice, I’ve witnessed miracles, tragedies, beauty, pain and everything in between. Residents and their families put all of their trust in us to ensure their wishes are fulfilled and their dignity is maintained.
I am honoured to care for, help and serve the residents that come to our hospice. End of life care is my biggest passion, one that I hold so close to my heart.
I will sit with you and hold your hand.
I will brush the hair from your brow.
I will do my best to explain why this is happening.
I will tell you that it’s going to be alright.
I will comfort your family as you transition.
I will tell you when there are weeks and not months, days and not weeks, hours and not days.
I will be there for you till the very end and beyond, this is my promise.
Thank you Emily and your fellow hospice nurses. Thank you nurses everywhere.
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Of the roughly seven hundred entries on seventy-five pages of nurses notes I was sent leading up to the court case I had initiated to try to get legal control of my mother’s care, the only one that made me cry was logged at 9 a.m. on June 26, 2013:
The second-floor “dining room” was small, more like a kitchenette really. It had a table in the middle at which six residents could be squeezed at mealtimes, a recliner (of course!) in one corner, and a rocking chair in the other. It had sliding glass doors that opened onto a little balcony where no one was allowed to go, and, at the opposite end, a sideboard with a sink and cupboards above.
I imagined Mom in there, needing to use the bathroom, but not knowing where one was. Maybe she had cramps in her tummy, as she often did in the morning. She suffered with diverticulitis. It flared up when she ate nuts or seeds or corn.
“Where’s the bathroom?” Mom would have asked other residents sitting at the table. “I need to go to the bathroom.”
The others, if there were any there, wouldn’t have answered because they wouldn’t have known. They would have forgotten, just as she had. If there were no other residents, Mom might have asked one of the care workers. If there had been any there, they might have noticed the telltale signs that Mom needed to got to the toilet. The signs were obvious, as I had explained to the Director of Nursing (DoN) four months earlier when she had asked me in a phone call whether Mom was in the habit of squatting and peeing on the floor. “No,” I said, surprised by her question. I wrote her an email the following day (February 5, 2013); it read in part:
“After I hung up the phone with you yesterday, I knew immediately why mom did this “squatting” behaviour in the living room at [the Dementia Jail]…she was desperate to “go to the peeps,” she didn’t know where to find a toilet, there was no caregiver…to help her, so she decided the best solution was to go on the spot rather than ‘in her pants.’
Even in her own room, she needs to be guided to where the bathroom is. For example, she may be sitting on her bed, facing the bathroom door, she will say: ‘ need to go to the peeps’, stand up, turn right, and head towards the closet.
It’s easy to see the signs when [Mom] needs to go to “the peeps;” she starts to look distracted, she fiddles with the front of her pants, she may stand up, she may put her hand on her lower belly or between her legs, just like little kids do.”
The DoN replied saying she would share the information with the staff. It seemed strange to me that she hadn’t figured out for herself what lay behind the “squatting,” given that she was meant to be an expert in caring for people living with Alzheimer disease. Mom’s behaviour was basically Dementia Care 101, or at least it seemed so to me.
Had the DoN conveyed the information to the staff (who also should have known without having to be told), and had there been one of them in the dining room that morning, they might have wondered what my mother was doing when she went over to sideboard and took a piece of paper towel from the roll that was sitting there.
They may have kept watching when she laid the paper towel on the floor in whatever space she could find. But when she stepped in front of the paper on the floor, unbuttoned and unzipped her trousers and started to pull them down, surely they would have intervened and taken her to the toilet. Or one would hope they would have intervened…
But no one took my mom to the toilet, so it seems there weren’t any care staff there to help her preserve her dignity. Where were they? Around the corner at the nursing station, which was no more than twenty feet away, having a chin wag as I had observed them do on many occasions? Or maybe they were busy with other residents? Who knows?
What can be understood from the notes, which were written from the perspective of the charge nurse and not my mother of course, is that Mom had a bowel movement on the dining room floor and then tried to clean herself. How must she have felt throughout this episode? Confused? Scared? Embarrassed? Ashamed? Agitated? Upset? Surely she was robbed of her dignity, and that’s what made me cry when I read the entry. When I flipped the page to find the same thing happened the following week, I saw red.
I remembered the incident of the dirty pull-up. The week after, Mom was without a pull-up under her trousers, which were wet, two nights running. The next Saturday morning, I found her walking naked in the hallway; her bed was soaked and the room reeked of urine. Then there were the times her incontinence pad was so full it had leaked, and created crescent-shaped wet spots on her pants.
None of these had been mentioned in the eight months’ worth of nurses’ notes I was sent in advance of the court hearing. But fourteen other incontinence incidents had been recorded. They all implied the fault lay with my mother, when in reality it was the DoN’s responsibility to ensure her staff met my mother’s basic hygiene needs. Had the Director of Nursing done her job, my mother wouldn’t have suffered the indignities she did.
Likewise, my mother wouldn’t have been chemically restrained with antipsychotic drugs, physically restrained using recliners and other means, hospitalized with thrombosis in her leg, forced into incontinence, forced into a wheelchair, denied the right of seeing me, her daughter, during the last eighteen months of her life, and left in the bathroom alone to fall, break her arm and as a result of the trauma, die three weeks later.
Note: To add insult to injury, there were no “public toilets” on the second floor where Mom did not have a room of her own (her room was on the third floor). So when she was “toiletted,” she was taken into one of the second floor residents’ rooms too use their bathroom. But if she “wandered” into one of the second floor residents’ rooms on her own, she was admonished for doing so, dragged out into the hallway and made to sit in a chair in the corner by the elevator. Naturally she protested by striking out, and was then written up in the nurses’ notes as being aggressive and uncooperative.
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Family care partner Nicole Jaouich visited her 102-year-old mother Hilda Zlatoroff in a Quebec long-term care facility every day for 6 years to help her eat and drink; her mother’s eyesight was failing, and she lived with dementia. When COVID-19 struck, no visitors were permitted from March 14, 2020, onward. Over the next 5 weeks, Jaouich watched her mother’s condition deteriorate via a video camera. Her mother died of dehydration on April 27,2020.
~~~~~~~~~~~~~~~~
At 102, it wouldn’t have been surprising if Hilda Zlataroff had died of old age.
Tragically, she did not.
Hilda Zlatoroff died of dehydration in the Saint-Joseph-de-la-Providence long-term care facility in Quebec, Canada, at 5:35 am on April 27, 2020. Ms. Zlatoroff had been a resident there for nine years. She didn’t die of COVID-19. She died as a result of COVID-19, and the massive cracks in long-term care that became canyons with the onset of the pandemic. “I guarantee that if I had been able to be with my mother, she would not have died of dehydration,” says Nicole Jaouich, Hilda Zlataroff’s daughter.
Jaouich had visited her mother every day for six years to help her eat and drink because Hilda Zlatoroff’s eyesight was failing and she lived with dementia.
“Maman needed encouragement to eat and drink. It was important not to rush her. ‘Do you want to drink a little juice?’ I would say to her, and then help her to lift the glass to her mouth,” Jaouich says.
“When I couldn’t be there or needed a break, I hired someone to go to the residence and be with her. She had someone with her eight hours a day every day for six years. She was my mother, she deserved to be cared for,” Jaouich has tears in her eyes.
Then COVID-19 struck, and from March 14 onward, no visitors were permitted at the residence in an effort to limit the spread of the disease. Over the next five weeks, Jaouich watched her mother’s condition deteriorate via a video camera she’d had installed in her mother’s room. It was painful.
“Sometimes they put the meal tray in front of her, but she didn’t touch the food because she couldn’t see it. Then they would come back and pick it up, even though she hadn’t eaten a thing. And how could she drink? They didn’t help her,” Jaouich says.
“I will never forgive the government for banning family caregivers from visiting and helping to care for our family members. The government knew very well the facilities were understaffed. This has been an issue for years,” Jaouich says.
“Family care partners were needed every day to help give basic care. When family members were banned, it made things even worse than they already were. Family care partners should have been integrated into the caregiving, not forbidden from coming to help,” Jaouich says.
“Of course I knew my mother would die, she was 102. But to have her die from dehydration, alone, without me by her side, was criminal and cruel. I will never get over it,” says Jaouich, who, ironically, is an advocate for better long-term care in Quebec, and a board member of Handicap Vie Dignité, an organization that has been fighting for reform for years.
Jaouich wasn’t able to be with her mother when she died, but she was able to visit twice for ten minutes in the week before her death, and then for forty-five minutes each time during the last few days before she passed.
“She was so beautiful,” Jaouich smiles slightly. “The last time I went she was breathing peacefully and her face was relaxed. She squeezed my hand slightly when I held hers. She knew it was me. She knew I was there. I only wish I could have been with her when she died.”
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The bulge at the front of Mom’s pants drove me nuts.
“What a crappy design,” I thought to myself ironically each time I saw her, which was every day, religiously.
She’d always been well turned out with great style and panache. Not meticulous or fastidious. Not prim and proper. Not designer, although her wardrobe included several unique pieces. Classic country chic – that was her look. Matching shorts and tops for the golf course. Straight skirt, crisp shirt, cashmere sweater and penny loafers to show million-dollar properties to a high-end clientele.
Now she was living with dementia in a “nursing home” where she was dressed in the same dirty clothes for several days in a row to cut down on laundering costs, and her “adult protective underwear” didn’t fit as it should. As if there wasn’t enough to cry about, the butt-ugly bulge was icing on the dementia cake.
I had “changed” Mom myself many times after asking one of the Dementia Jail staff to show me how. I wanted to do everything I could to make Mom as comfortable as she could be under the circumstances.
“You wrap the long tabs around her waist and attach them at the back with this sticky bit,” the caregiver demonstrated. “It’s kind of like Velcro.”
The tabs overlapped to create a waistband.
“Then you pass the pad through her legs from front to back,” she said as she did it. “The back part also has sticky bits on the corners, they attach to the waistband. It’s sort of like an old-style baby’s diaper, except the place where the safety pins would be is at the back instead of at the front.”
I’d never changed a diaper in my life, but it wasn’t rocket science. This caregiver had been doing it for yonks; her demo and instructions were clear. No doubt she had shared the same procedure with dozens of trainees over the years, passing knowhow from one person to the next.
“But what about the bulge?” I asked.
The ridge started at the bottom right hand side of Mom’s tummy and ran down her upper thigh (think over-endowed male ballet dancer without a cup who “dresses” right). Besides being unattractive, I guessed it would be uncomfortable for her.
“What bulge?” The caregiver hadn’t noticed. I showed her.
“Hmmmm. I don’t know,” she was unhelpful on this score. “All I know is this is the way you put them on.”
The bulge continued to annoy me. I just couldn’t get over the shitty “diaper” design and the ugly bump. But I didn’t say anything more about it to anyone.
One afternoon about year into her stay in jail, I brought Mom to the toilet to change her shortly after I got there for my daily visit. I could smell she was long overdue. When I pulled down her trousers, I found that, besides being full, her “pad” had been put on backwards. The waistband’s long tabs were attached at her belly instead of at the back, as the personal support worker had shown me they should be.
My blood began to boil. Mom’s Dementia Jail hosted student nurses on practicums; a dozen or so had been there for several weeks. Apparently one of them had “done” Mom, but no one had shown her how to “do” her properly.
“You’d think they would read the instructions,” I said to Mom, exasperated. I’d sat her down on the toilet by this time; she had no idea what I was talking about.
“What instructions, Punkie?”
“It’s okay Mom,” I chastised myself for not keeping my mouth shut for her benefit. “I forgot to read the instructions. Don’t worry, I’ll get them now.”
I went to the closet and grabbed the bag of TENA incontinence pads from the shelf and brought it back to the bathroom. Mom couldn’t be left alone for long without risk of her standing up and then falling down, which is what would lead to her death two years later.
I looked at the package. The instructions were poor. A series of three diagrams showed the midriff and upper thighs only. The only clue that this might be the front of the torso was a tiny dot of a belly button. Even then it was hard to figure out. The drawings only showed one perspective. There were no buttocks, nipples or other physical features that would have made it unambiguous.
I extracted a fresh pad to investigate further. Oh my God. Once I examined the pad with a curious eye and laid it on the floor, the cause of the bulge became immediately obvious – the pads were being put on backwards. One of the student nurses had obviously read the instructions or figured out for herself how the pad should be put on properly.
It was impossible not to see which bit was meant to be at the front and which at the back once the pad was relatively flat. One end was much wider and fuller than the other; it should cover the behind. The other was much smaller, narrower and far less bulky; it should go at the front. The bulge was caused by the billowy back of the pad being scrunched up bellow Mom’s belly, between her legs and down the top of her thigh instead of where it should have been – covering her bum.
The problem had nothing to do with the design of the pads and everything to do with how they were being put on.
This incontinence product was clearly meant for someone who could dress herself. The wearer wraps the long tabs around her waist and attaches them at the front like an overlapping belt. She bends down, reaches between her legs and pulls the front part through and up, then attaches its two corners to the “belt” with the sticky bits and voila!
Here’s a demo:
Easy, fast, and simple for someone who is able to do it herself; not so for a caregiver assisting someone with dementia who needs help in the toilet. For a caregiver, putting this type of pad on the way it is designed to be worn is cumbersome, slow and problematic.
I know because as soon as I discovered how the pads should be worn, I began putting them on properly. I reckoned it would be more comfortable and sanitary for Mom – not to mention that it eliminated the unsightly bulge at the front of her trousers, and reduced the likelihood of the pad overflowing and drenching the back as had happened on several occasions that I knew of.
I asked the staff questions about the toileting procedures, and suggested the pads be put on as they were designed to be. But even when I shared what I had learned, the jail staff continued to put Mom’s pads on back to front. Why? Because it was faster and easier and that’s the way they’d always done it. Why change? Who cares?
“People with dementia don’t know the difference,” some might have said.
“No one’s ever complained,” others might have echoed.
People with dementia may or may not know the difference; but I’m sure they would feel the difference just as anyone else would feel the difference if their underwear were on back to front.
Likewise, people with dementia may not complain in the same way we might. Maybe we don’t hear them because we haven’t taken the time to learn their language. Perhaps we’re not listening well enough.
My mom was much more aware and “with it” than people gave her credit for, and she knew it. Nevertheless, she may not have been able to fully articulate if, when and why something felt uncomfortable. Ill-fitting clothing that pinched or pulled or was too loose or too tight might have caused her to be anxious and distressed without her being able to say why.
I would be really unhappy if I were made to wear my underwear back to front. Wouldn’t you be? This is a perfect metaphor for the way we currently treat the elderly and people with dementia. Like my Mom’s pads, the whole damn thing is the reverse of how it should be.
Similar stories of neglect and abuse are shared by tens of thousands of others in North America and around the world. If we don’t make significant changes soon, it will be the story of millions more in the not-too-distant future.
It’s time for a change that isn’t ass backwards.
*Note: I wrote this post long before the tragedy of COVID-19 manifested. Sadly, many of my fears became a reality with the pandemic. Still, there is time to prevent more needless suffering in the future. Please speak up for better healthcare for us all, young and old.
**Note: I’ve had comments from care workers saying they have to put pads on backwards in order to make it more difficult for residents to remove them for one reason or another. I completely reject that notion as yet another form of physical restraint. Furthermore, there was no reason whatsoever that would have justified putting my mother’s pads on backwards. It was simply a matter of ignorance, convenience and efficiency.
Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and here I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.
According to Dr. Harlos, there are three important things people should remember if they can’t be with a loved when he or she is dying:
Not being in the room at the time of death does not mean you are absent at the time of death
You are connected in spirit and in soul to the people you love
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Imagine being made to wear incontinence briefs so full of waste they weighed a pound and half to two pounds. Might you feel uncomfortable? Anxious or tearful? Maybe even traumatized?
“Your mom’s been weepy and anxious since I got here this afternoon,” Nurse Ratched* said as I approached. She was writing notes in a binder that lay on top of the meds cart. I stopped beside her.
“She’s not feeling well. Maybe something to do with the food at dinner, or a BM. Anyway, she’s lying in bed,” Ratched said.
“Okay, I’ll check on her.” I continued down the third-floor hallway toward my mother’s room, the last one on the right.
Mom was in bed, as Ratched had said. The antique lamp on the pine side table we’d taken from her bedroom at home cast a soft yellow light on the pillow beside her head. Otherwise the room was dark. The colour of her cheeks matched the white facecloth that lay folded on her forehead. Her mouth was open; her down duvet was tucked under her chin. She looked as if she might be dead.
“Mom, are you okay?” No answer. I lay my hand gently where I guessed her right shoulder might be under the cover, and pressed lightly. “Mom?” Still no answer. I pulled the duvet down a bit. She was dressed in her cream turtleneck with the pink flower on the side and her purple cashmere sweater. “Mom, are you okay?”
“I’m a little shaky,” she said finally, her voice barely audible, her eyes still closed. I pulled the duvet down further. Her right hand lay a little below her waist, against the dark brown of her corduroy trousers; it was shaking violently. I’d never seen her shake like that. I touched her left hand; it was quivering. She’s not cold. I felt the cloth on her head: wet and cool.
“Do you need to go to the peeps, Mom?”
“No.”
“Let’s try anyway, Mom. I know you don’t need to go, but let’s try anyway, okay? It might help you feel better.”
“I don’t need to go. I don’t think I can stand up. I feel a little shaky.”
“I know Mom, but let’s try,” I said as lifted the duvet from her legs and feet. She had socks and shoes on. I helped her sit up. The shaking in her hands had subsided somewhat; she placed them beside her thighs and pushed herself up from the bed. Her small bathroom was three feet away directly in front of her. I switched the light on, and guided her forward until she was beside the toilet, and then I gently swivelled her around.
She unbuttoned and unzipped her trousers, lowered them to her knees, sat on the toilet, reached around behind, found a piece of stool clinging to her bottom, grabbed it and dropped it into the toilet bowl, leaving feces all over her hand. It was then I realized she didn’t have a pull-up incontinence brief on.
I took some toilet paper from the roll on the wall beside her and cleaned Mom’s hand. When I went to put the soiled tissue in the small garbage can next to her feet, I saw that the plastic bag liner was folded over on top of itself to cover something within. I bent down and “opened” the plastic bag. My free hand flew to cover my mouth and nose as my stomach heaved. The stench was sickening. I quickly dropped the ball of dirty toilet paper into the plastic bag, and folded it back over what was inside.
I straightened up. Took a couple of deep breaths. Reached over to the towel rack, removed the single blue washcloth that was there (blue was for “peri care;” white for everything else), turned the hot water tap on and soaked the cloth under the flow.
“I’m going to give you a bit of a wash, okay Mom?” I said before I attended to her hygiene.
Once she was clean, I got her undressed, into her nightgown and safely to bed. Then I went back to the bathroom. I lifted the bag out of the bin. It weighed three or four pounds. I put it in the sink and opened it. This time I was prepared for the disgusting smell. Nevertheless, it again made me gag. Inside was a soaking wet pull-up full of shit.
My chest tightened; blood rushed to my cheeks. I knew exactly how that shitty pull-up came to be in that bag. I remembered the morning I had found an incontinence brief in Mom’s ensuite ballooned to five times it’s normal size and full of water because she’d tried to wash it out in the sink. I had been amazed at how much liquid one of those briefs could hold. I’d felt such tenderness for Mom when I’d made the discovery. Now I was infuriated. I gathered the edges of the top of the bag into my hands, and tied them in a knot.
I walked out of the bathroom, said goodnight to Mom, gave her a kiss, and then went out into the hall, bag in hand. Ratched was still there with the med cart. I went over to her.
“What’s this?” I said, holding up the bag.
“I know,” she said. “I’ll throw it out for you.”
“I know? What do you mean, I know?” I wanted to scream at her. “My mother is alone in her room in the dark, in bed, fully clothed, but without an incontinence pad. She’s shaking like a leaf, she still has her shoes on, she’s in distress and you ‘know,’ but you’re not doing anything about it?”
But I didn’t scream at her.
“No,” I said. “I’m keeping it. My voice was calm and level. “This is unacceptable.”
“I don’t know what happened. It must be from the first shift,” she said. “I only came on at three o’clock.”
When I got home, I immediately composed an email to the family member in control of my mother’s care describing in detail what I had found and why.
“Nurse Ratched may not know what happened, but I do, or at least I can take a highly educated guess,” I wrote, and then continued:
“At some point during the day, Mom went into her bathroom and found that she had had a bowel movement in her pull up. How long it was there and when she discovered it is unknown, but it must have been quite awhile. She hates to be wet or have shit in her “panties”, so she took off her trousers, and her “panties,” and tried to wash the panties in the sink. When she couldn’t get them clean, she probably gave up and left them in the sink, because she doesn’t throw out panties. Then, because she couldn’t find new panties to put on, she put her trousers on without any panties/pull-up. All of this must have been really stressful on her because she has a hard time dressing herself now. I can’t imagine how humiliated she must have felt. She never goes without panties. This may have been what caused her to feel anxious and weepy.
Somebody must have found the soaking shitty pull-up in the sink, and put it in the garbage bin, then folded the ends of the over it to contain the smell. This kind of sequence is beyond Mom’s capability. Whoever discovered the dirty pull-up, did not bother to check Mom to see if she needed a new one. I know it didn’t just happen before I got there, because her trousers smelled like urine, which means she was without a pull-up for some time; how long I don’t know. All of this would have been REALLY upsetting, and stressful for Mom. Having panties on and being dry is extremely important to her. This kind of situation is unacceptable. It could have been avoided if Mom had a one-on-one caregiver with her as she should have every day.”
I closed with “I expect you will want to address it with [the Director of Nursing] personally, and to do whatever is necessary to ensure Mom has one-on-one caregivers with her every day to avoid this kind of situation recurring and causing Mom undue stress and discomfort.”
I sent the email that night. A few days later, the Director of Nursing met with the person in control of my mother’s care and his wife. Nurse Ratched was made to apologize to them. A few days after that, the Director of Nursing met with me. There was no apology during our meeting. On the contrary. The Director of Nursing threatened to stop me from seeing my mother. It was the first of several similar threats she made to me over the next three and half years. She also told me that if I didn’t stop complaining about the care my mother was receiving that the care would get worse not better.
Those are two of the reasons people stop advocating for their family members in long-term care facilities — they’re afraid the care will worsen or they will be barred from visiting. There are other reasons as well. Care advocates’ fears are justified. Family members really do get banned from seeing their loved ones as punishment for advocating on their behalf. The hours I was allowed to see my mother were cruelly restricted during the last eighteen months of her life because of my advocacy.
Eight months after the pull-up incident, I would come to know what Nurse Ratched had written in my mother’s file that day (a more readable version is below the pics):
Nurses notes 13/02/09: “Upon my arrival resident appeared depressed and sad. Restless. Down for supper. Continued to be restless, and getting up from supper table several times. After supper brought to second floor by another resident saying she did not feel well. Appeared anxious. [??] calmed. Brought to third floor to her room. Settled on bed for a rest. Daughter into visit at 1915. Found resident anxious and hand shaking. Vital signs taken blood pressure up, no temperature. Rechecked vital signs; blood pressure down, resident appeared calmer. In good spirits. HS care done, then settled to bed.”
Long-term care facility staff can write whatever they want, and leave out whatever they want in a resident’s file. What appears in the file or on the chart is the nurse’s or care worker’s version of events. But what about the resident’s version? Who sees their perspective? What is their experience? Who listens to their voice? Who advocates on their behalf?
It’s important to expose neglect and abuse. Often, it’s not easy. Just uncovering the facts can be extremely challenging. Sometimes it takes a very long time. Because people lie. Then they tell more lies to cover up their original lies. They hide the shit they don’t want others to see, just like somebody hid that shitty pull-up in the waste basket in Mom’s bathroom because they didn’t want to deal with it, or with my mom.
The bulge at the front of Mom’s pants drove me nuts.
Nurses notes 13/02/09: “Upon my arrival resident appeared depressed and sad. Restless. Down for supper. Continued to be restless, and getting up from supper table several times. After supper brought to second floor by another resident saying she did not feel well. Appeared anxious. [??] calmed. Brought to third floor to her room. Settled on bed for a rest. Daughter into visit at 1915. Found resident anxious and hand shaking. Vital signs taken blood pressure up, no temperature. Rechecked vital signs; blood pressure down, resident appeared calmer. In good spirits. HS care done, then settled to bed.”
My Alzheimer's Story 