Advocacy, Real life, Toward better care

dire state of ltc in ontario and across canada is not news

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

During the week of April 26, 2021, two separate reports, both of them “scathing,” described the long-time sorry state of affairs in long-term care (LTC) in Ontario.

The content of the reports was widely covered by the media, which is kind of surprising. Because it’s not news. The media is meant to report news. And the appalling state of long-term care in Canada is not news. It’s just the way it is, and the way it has been for decades.

The fact that LTC in Canada sucks is not news. At least not to Canadian elder care and dementia care advocates such as myself, or to many family members and care partners of LTC residents in Ontario, or across our country. Nor is it news to advocates, family members and care partners in Australia, the United Kingdom, or the United States.

We’ve all known about the shortcomings, the abuse, the neglect, and the atrocities “revealed” in these reports for a long time. In fact, we’ve been screaming about them at the top of our lungs for years, in some cases for decades. We are not shocked by the findings. Not at all. It’s just more of the same ole same ole.

When I came back to Canada from overseas in 2011 to care for my mother who lived with dementia, I knew less than nothing about providing such care. It was a steep learning curve. When she was relocated to a LTC facility in Quebec in the fall of 2012, I thought she was going to a place where people would care for her. That professionals who knew what they were doing would oversee her care. That she would be respected, not neglected.

I was wrong. Within a week, I threw all those misconceptions out the window and began advocating like crazy for my mom. I was unsuccessful.

In 2013, I initiated legal action to try to get control of her care from the sibling to whom she had entrusted it. In 2014, the facility’s Director of Nursing and its on-contract physician both lied in the court proceeding. The judge ruled against me. I visited my mother every day for the next two and half years. I witnessed her continued neglect and abuse. I started a blog. My visits were restricted as punishment. I documented everything.

Anyone with any common sense who spends time with a family member in most LTC facilities in Canada will quickly realize the system is broken. You would have to be deaf and blind not to. The proof is legion.

In October 2016, two months after my mother died, and almost four years before the onset of the COVID-19 pandemic, I wrote a post describing the reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities.

In January 2017, I spoke before a senate committee about the abuse my mother had experienced. The committee members listened, but it seems not to have made a difference. In November 2017, Quebec’s Minister of Health announced an initiative to reduce the use of antipsychotics in LTC. Too late for my mom; she had already been dead a year.

In September 2019, I submitted a twenty-page complaint to the Order of Nurses of Quebec regarding the conduct of the Director of Nursing of the facility in which my mother resided. It included an in-depth analysis of what had transpired as well as audio, video and photographic evidence that clearly showed the abuse and neglect. A year later I received a one-page whitewash in reply. I made a follow-up complaint to the Order’s Review Committee in December 2020. I haven’t received an answer to the follow-up. I have also complained to the College of Physicians and Surgeons about the physician’s conduct. No response.

In 2020, I tweaked my 2016 post slightly and re-blogged it under the title “it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks.”

 Both of these posts outlined the same basic issues it has taken an auditor general and reams of experts months to conclude. They are:

1 ) Ageism & stigma
2 ) Lack of awareness
3 ) Poor leadership
4 ) Lack of training/understanding
5 ) Low staff-to-resident ratios
6 ) Warehouse-like environments
7 ) Dis-incentivized workers
8 ) Uncaring cultures
9 ) Ineffective “policing”
10 ) The bottom line

I mean really. C’mon.

We’re not talking rocket science here. We don’t need reports. We need ACTION.

it’s taken a pandemic and tens of thousands of deaths for people to get what long-term care advocates have known for decades: the system sucks

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Real life, Toward better care

quebec order of nurses accepts ridiculous excuses for physically restraining mom living with dementia

Dementia care and elder care advocates in Canada and around the world will tell you their input with respect to improving care for seniors is largely ignored. This is one of the main reasons neglect and abuse continue in many long-term care facilities. It’s also one of the reasons thousands of older adults have died during the pandemic of 2020/21. This real life example illustrates how our voices are not heard.

~~~~~~~~~~~~~~

Article 118.1 of the (Quebec) Law on Health Services and Social Services is clear with respect to physical and chemical restraints; it reads:

“Force, isolation, mechanical means or chemicals may not be used to place a person under control in an installation maintained by an institution except to prevent the person from inflicting harm upon himself or others. The use of such means must be minimal and resorted to only exceptionally, and must be appropriate having regard to the person’s physical and mental state.”

Nevertheless, my mother, who lived with dementia, was chemically and physically restrained in a long-term care facility for almost four years from November 2012 until she died in August 2016.

In September 2019, I lodged a complaint with the Quebec Order of Nurses regarding the facility’s Director of Nursing [XXX] who was responsible for my mother’s “care.” My eighteen-page complaint is comprehensive, evidence-based, and well-documented with photographs, videos and audio recordings. It includes sixty-three hyperlinks to evidence on this blog and other third-party sites. It is based on government policies and law, as well as the Quebec Order of Nurses’ Code of Ethics.

On the subject of physical restraints, my complaint says:

[XXX] allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means, all of which flew in the face of measures undertaken by the Quebec Department of Social Services to reduce the use of such restraints since 2002. See these links:

It took about eight months for my complaint to get to the top of the investigator’s pile at the Quebec Order of Nurses, and another six months for the investigation to be completed. On November 20, 2020, I received a letter from the complaint investigator. On the subject of my mother being physically restrained every day for almost four years he wrote:

“We questioned the reason a chair was placed under the footrest of your mother’s recliner. [XXX] explained that this measure was necessary to elevate your mother’s lower limbs and that the chair was broken. She also claimed that this was done with your brother’s consent as he was responsible for giving consent on your mother’s behalf. Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get

We took care to explain to [XXX] that it was indeed a form of restraint that should not be used even to compensate for a broken equipment. She clearly understood that it was not appropriate to do so and asserted that this would not occur again.”

As I read what he had written, I became more and more incensed. I was flabbergasted that he accepted such patently ridiculous excuses in the face of the mountains of evidence I had provided including dozens of images and several videos of my mother being restrained.

On December 17, 2020, I followed up with the Quebec Order of Nurses’ Review Committee about the shortcomings of the investigation. With respect to the ridiculous excuses and lies [XXX] supplied on the subject of physical restraints, I said:

“I will address these ludicrous assertions one by one.

“…this measure was necessary to elevate your mother’s lower limbs…”

Not true. No doubt [XXX] used the excuse of the thrombosis my mother experienced in late 2012/early 2013 as the reason for elevating her lower limbs. Did she mention the reason why my mother got the thrombosis in the first place? It was because they weren’t providing her enough opportunities to exercise. Regardless, the first pictures of the chair under the recliner were taken on September 10, 2014, eighteen months after the thrombosis occurred, and when swelling in my mom’s legs was not problematic. Strangely, when it was problematic, [XXX] and her staff did little to alleviate the swelling in my mom’s lower limbs. They didn’t even provide her with proper socks to help her heal.

“…and that the chair was broken.”

This is an outright lie. The chair was not broken. I was in my mother’s room virtually every day. The recliner worked perfectly well. I know because I rescued my mother from it every time I found her there. How could [XXX] possibly know if the recliner was broken or not? She didn’t go around the place testing the integrity of the furniture. As I said above, the first pictures of a chair under the footrest were taken on September 10, 2014. The second pictures (of a different chair under the footrest of the same recliner) were taken in February 2016. That means if the chair was indeed broken (which it was not), then it would have been broken for at least 17 months. If the chair was broken (which I repeat once more it was not), wouldn’t it have made sense to have it fixed or replaced?

“She also claimed that this was done with your brother’s consent…”

Come on! Is it reasonable to believe the [personal support workers] went to the nurses and asked them to phone my brother to see if it was okay for them to put a chair under the footrest of my mother’s recliner when they wanted to? At least [the investigator] had the grace to use the word “claimed,” because this is clearly also a lie. Furthermore, even it were true, is it okay to abuse someone by physically restraining them because someone gave you permission to do so? Would it be acceptable, for example, for a teacher to tie a student to a chair if the student’s parents had given her permission to do so? Of course not! Because it’s not okay to tie children to chairs, period.

“Finally, she said that the call bell was always available to your mother so that she could call the personnel if she wanted to get up.”

My jaw literally dropped when I read this. I had to read it over several times to believe what I was reading. My mother had dementia. She didn’t know what a “call bell” was, let alone that pulling one would summon help. This is just so far out of the realm of possibility that it is incomprehensible to me that anyone who has ever dealt with people living with dementia at the stage my mother was would say something as inane as “she could have used the call bell.” This is utter nonsense. Plus, look at the pictures I provided. Do you see a call bell? No. You may be able to see a cord that is attached to my mother’s shirt with a safety pin that is attached to an alarm in the wall so an alarm rings in the unlikely event that my mother would be able to make her way to her feet (which she would not because she was trapped in the recliner). And even if she did know what a call bell was and what its purpose was and even if she were able to assess when she needed help, my mother would have had to reach behind her, over her head, behind her shoulder and way to the back in a very awkward way to pull said call bell. Or, she would have had to understand that she needed to reel in the extra “ribbon” to ring the bell. She wasn’t capable of doing any of those things at that stage of the disease, which you can hear for yourself if you listen to the audio at the link I provided in my complaint.

The fact that [XXX] said my mother could have used the call bell is incredible. Either [XXX] has very little understanding of dementia or she was desperate to use any excuse, no matter how implausible, to exonerate herself and avoid taking responsibility for the abuse my mother was subjected to. The fact that [the investigator] actually accepted what [XXX] said as the truth is equally unbelievable. It is unconscionable that people like my mother are being neglected and abused by nurses like [XXX] while your organization turns a blind eye to the ill treatment.

Furthermore, my complaint was about the ways in my mother was physically restrained every day for almost four years. The chairs being placed under the footrest comprised one example among many. Despite the evidence I provided, [the investigator] seems to have completely missed the fact that my complaint was that [XXX] “allowed staff to physically restrain my mother using reclining chairs, wheelchairs, tables, alarms, and other means.” She was trapped/restrained in other recliners (without chairs under the footrests) every day as I showed in the pictures I provided.

Such physical restraints are prohibited by Article 118.1 of the Law on Health Services and Social Services in Québec which says that such measures are not common practice, but only used exceptionally, after having assessed all other restrictive solutions. The resident’s situation must be carefully studied with due consideration for his physical and psychological state to determine the most appropriate intervention.

As of March 1, 2021, I have not received an answer to my letter to the Quebec Order of Nurses’ Review Committee. Based on my experience of elder care in Quebec and Canada, I’m not hopeful.

Still, one must #FightTheGoodFight

hidden restraints: hidden abuse

20 questions to ask yourself about “wandering”

Advocacy, Life & Living, Poetry

a daughter’s rendering and remembering

November 16, 2018: I doubt I will ever get over the deep grief I feel each November 16, the day my mother was relocated to #DementiaJail in 2012. All I can do is try to process it in whatever way I can. This year, once again, it’s with poetry.

the rendering

©2018 punkie

the rendering

nothing more
could be done
all fault lay with
the setting sun

whose will it was
to force imprison
the one from whom
we’d both arisen

a deal had been struck
the year before
when no one knew
what lay in store

then came time
to pay the piper
fate took aim
fired like a sniper

shot her, then me
but not to death
left us bleeding
drained of breath

we struggled hard
for four more years
held hands amidst
the joys and tears

until the day that
she surrendered
with untold truth
for me to render

now i fight on
to right the wrong
of stolen voices
and silent songs

 

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

November 16, 2017:

when you’re put behind bars

November 16, 2016:

the day our best wasn’t good enough

November 16, 2015:

joys and tears throughout the years

November 16, 2012:

moving day

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Advocacy, Real life, Toward better care

a turn for the worse: july 28, 2016

Mom was lying in bed under the covers when I got there on July 28, 2016. She was facing the window through which the sun shone brightly; her back was to the door. I walked around the foot of the bed. All hope evaporated when I saw her corpse-like face.

The bruises on her forehead were worse than they’d been the previous day. Her eyes, which were mere slits, stared fixedly into the sunshine. If it hadn’t been for the high colour in her cheeks, I might have believed she was dead.

“Mom?” I said. She didn’t move. She didn’t blink. She didn’t make a sound. “Patty? Are you okay?” This time she tried to answer. But the words that emerged were little more than an exhale.

I pulled the armchair up close to the edge of the bed and sat down, my face close to and level with hers. I didn’t say anything for several minutes, and then checked in again.

“Is it sore Mom?”

“Yeah,” she whispered.

“It’s hard eh, Mom?”

“Yeah,” she whispered.

“Can I do anything for you?”

Silence for a good ten heartbeats, and then a barely audible, “no.”

That’s how it went for most of the next three hours. I asked her the same questions over and over: Are you comfortable? Are you in pain? Are you hot? Are you cold? Are you thirsty? Are you hungry? Do you want to sit up? Do you want to lie down? Do you want to go home? Sometimes she answered verbally, sometimes she squeezed my hand, and sometimes she didn’t respond at all. Besides the questions, I made statements: Go to sleep, Mom. Close your eyes, Mom. It’s okay, Mom. I love you, Mom. You are my hero, Mom. Gran is taking care of you, Mom. I tried not to cry. Sometimes, I was successful.

After I’d been there about forty minutes, a student nurse came in.

“How’s your mom?” He said. “We thought we’d try to get her up with a lift.”

Get her up? Are you mad? “I don’t think she wants to get up,” I said.

“Which arm is it that’s hurt?” he asked. What a ridiculous question. Why are you asking me? You should know which arm is hurt. You are supposed to be taking care of her! I wanted to shout at him, but I didn’t say a word.

“Was the oxygen off when you came in?” He asked as he was leaving, pointing to the pump on the other side of the bed.

“Yes,” I replied.

He returned about twenty minutes later. “I’m just going to take your saturation levels dear,” he said to Mom as he put a device on her finger. He apologized for the disruption, and wondered if I wanted some tissues. “I’m good,” I said. He left again.

Sarah,* the charge nurse, came in five minutes later, at a little after 4 p.m. I’d been with Mom about an hour. I liked Sarah. She was a “replacement,” a stand-in when one of the staff nurses was on holiday or ill. She’d been there the day before as well.

“Hi, how are you? Sarah asked me.

“Good,” I lied, my voice trembling.

“How’s your mom today? She was more talkative yesterday, eh? Is she talking at all today?

“She’s trying, but not able to. I think she has a broken nose. I think she’s dying,” I choked a little, tears welled. In hindsight, I can’t believe I said that within Mom’s earshot. She could hear and understand what we were saying, even though she was having a helluva’ time responding.

“I don’t like the way her arm looks,” Sarah frowned.

I didn’t like the look of Mom’s arm either. “It’s all black,” I agreed.

“Yeah,” Sarah said.

“What does that mean?” I asked.

“I’m not sure. I guess she fell on it, right?” Statements like this from the nurses drove me crazy. You know what happened. It’s all in Mom’s file. Why are you asking me when you know damn well nobody tells me anything.

“Did she see the doctor?” I asked. One would have thought that the doctor would have been the first person Mom would have seen after her “seizure,” but I had learned that common sense often did not prevail.

“Yes, I believe so.”

There’s no such thing as a straight answer, even with Sarah.

“This stinks. This bandage stinks,” I said, motioning to the dressing on Mom’s left arm. “And her face is flushed.”

Mom tried to talk. She failed. All that came out was a series of uhs and umms and sounds that were meant to be words but weren’t.

“I’m just gonna listen to your breathing okay?” Sarah said as she placed a stethoscope on Mom’s chest.

“Your breathing is kind of laboured, Mom,” I said.

“Oh?” Mom replied as if I’d informed her it was supposed to rain later that evening. I couldn’t help but chuckle. Mom was still with us, even though she looked as if she were on her way to a better place.

“Okay, It sounds good,” Sarah said, straightening up.

“We were singing and everything yesterday,” I said.

“Yeah, I know.” Sarah had done her job and read the notes.

“What was this morning like?”

“I don’t know,” Sarah said. “I just got here.” Standard answer from the afternoon shift nurses. They knew what the morning was like if they’d read the notes, but they stonewalled. Judging by the number of times I’d heard this or a variation thereof, I reckoned it had to be part of the nursing home 101 text book under “How to conceal stuff from curious family members who want information about those they love.” I couldn’t contain my frustration, despite my fondness for Sarah.

“Doesn’t anyone talk to each other? Nobody knows what goes on?” I said, keeping my tone even and my voice as sweet as I possible could.

“Well, she ate soup at lunch, but she hasn’t really been talking like she was yesterday,” Sarah said. “I’m gonna put a little bit of oxygen on her, just to make her more comfortable.” Okay, so you DO  know…

Mom protested, just as she had done the previous day. She didn’t like the oxygen; it was uncomfortable and noisy.

I went for a pee while Sarah took Mom’s blood pressure. I spoke to Mom’s roommate Cassie* on the way to and from the little bathroom that was at the corner of their shared space. A white almost-floor-to-ceiling curtain separated Cassie from Mom and me; it was torn and missing hooks in places where it was supposed to be attached to the metal tube from which it hung wonkily.

After Sarah left, I comforted Mom while the ratatatatat of the oxygen machine marked the passing time. I closed the blind so the sun wouldn’t shine in her eyes. I took some pictures so I could tell her story one day. I repeated my questions and statements at intervals. Mom tried to answer, or was unresponsive. I cried. I helped her to drink a little water with a sippy cup. She spluttered and coughed. I despaired. I did my best to be strong. She slept, squeezed my hand now and again, stared that blank stare into some void, or so it seemed. Even on this horrible afternoon, there were soft spots – moments of clarity, gentle humour and joy.

“Can you see me Mom?” I asked, and then joked:

I sang her some songs. She managed a garbled few lines of “When you wore a tulip,” which we had sung together with such gusto only twenty-four hours before:

Sarah returned; she gave me some Boost pudding. I fed it to Mom in spoonfuls. It was vanilla flavoured. Mom thought it tasted like banana. She liked it:

The snacking process took twenty minutes or so, after which Sarah returned. She repeated that she didn’t like the look of Mom’s arm, and said the only way to know if it was fractured was with an X-ray, which meant a trip to the hospital. We discussed the implications of that, whether Mom should go and why she hadn’t been sent sooner.

“I’m going to call the ambulance,” Sarah said finally.

“Somebody should go with her,” I said.

“It would be better, yeah.”

“I don’t think she should go alone,” I restated, knowing I couldn’t go because I wouldn’t be allowed, given I wasn’t the one in legal control of her care.

“Personally, I wouldn’t want my mom to go alone either,” Sarah said.

“She needs someone to go with her,” I asserted once more for good measure. It’s hard to believe that a nursing home would send an ill person living with dementia in the later “stages” (as Mom was), to the hospital alone, but I have no doubt it happens all the time.

“I’m going to make the calls,” Sarah said. She came back about fifteen minutes later, this time accompanied by the student nurse.

“We need to take her vitals and give her a Tylenol.” It was clear Sarah wanted me to leave even though she didn’t say it in so many words.

“Maybe you could call me later, and tell me what happened,” I said as I stood up to go.

“Sure,” she said.

I gave Mom a kiss goodbye, and made my way home.

 

*Not their real names.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

https://myalzheimersstory.com/2018/07/28/jillian-jiggs-and-a-mind-of-her-own-july-27-2016/

https://myalzheimersstory.com/2018/07/31/no-news-is-good-news-july-29-2016/

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Advocacy, Real life, Toward better care

jillian jiggs and a mind of her own: july 27, 2016

Mom had an irrepressible spirit coupled with an extraordinarily strong will to live. When I was six years old, she came close to death as the result of a pulmonary embolism caused by a miscarriage; she spent many months in the hospital.

So it wasn’t surprising that she was much improved when I arrived to visit the day after her “seizure,” despite being bruised and battered. Her right arm looked particularly bad — it was completely black and blue — but she was calm, and far more articulate than she had been 24 hours earlier.

I found her favourite book, Jillian Jiggs, and asked if she would like me to read her a story:

It occurs to me as I write this that Mom may have been such a big fan of Jillian Jiggs because, from all accounts, she was just like the book’s heroine as a child: red hair, energetic, enthusiastic, creative, positive, confident, mischievous and full of fun. She retained all of those traits, even in the last days and weeks of her life, even under the most difficult circumstances:

As we neared the end of Jillian Jiggs, a nurse came in to check Mom’s oxygen levels. When she found they were down, Mom made it clear she wasn’t happy with the prospect of having plastic tubes stuck up her nose. One only has to listen to her words and tone to know that, while she may not have understood the complexities of what was going on, she knew very well what she didn’t like:

Exchanges like these are undeniable evidence that Mom had an excellent grasp of much of what was happening around her — she could process a lot more than she was given credit for. This is why I believe we need to completely rethink the way we see and treat people who live with dementia.

We talked lots during the next hour, though Mom’s speech was greatly impaired by her aphasia and the trauma she had suffered. I applied moisturizer to her hands, and we sang “When you wore a tulip” again (this time with more gusto in the delivery than the day before):

I left her side that afternoon feeling hopeful.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

https://myalzheimersstory.com/2018/07/26/the-beginning-of-the-end-july-26-2016/

https://myalzheimersstory.com/2018/07/30/a-turn-for-the-worse-july-28-2016/

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Advocacy, Real life, Toward better care

the beginning of the end: july 26, 2016

On July 26, 2016, at about 14:30, just before I was about to go to visit Mom in Dementia Jail, I got a call from that day’s charge nurse.

“Your Mom had a seizure this morning,” she said.

There were two things that were strange about the call. One, that I was being called at all because the nurses were under orders not to give me any information as I was not the one in legal control of my mother’s care, and two, that Mom had had a seizure. She’d never had a seizure before.

“The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the nurse added. Something was odd about this as well. How could the caregiver have not gotten “there in time” if she were by Mom’s side as she should have been? And how could Mom suddenly have a seizure so violent that it would catapult her out of the wheelchair in which she had become confined and onto the floor in a nanosecond?

“What kind of seizure?” I asked.

“A seizure,” the nurse repeated. “She was on the ground, and turning blue. She’s okay now, but I wanted to let you know.”

If Mom were “okay,” the charge nurse wouldn’t be calling. They don’t tell me anything. And now a “courtesy call?” Something’s really wrong. I immediately stopped what I was doing, and drove the three minutes it took to get to Mom.

I found her sitting wide-eyed and upright in her bed; oxygen being pumped into her nose. She was talking a blue streak of gobbledegook to an empty room. Her face and right arm were bruised, but not too badly, at least not then. I sat down on the bed beside her. She babbled on. I agreed and empathized with whatever it was she was trying to communicate.

After fifteen minutes or so, a different charge nurse than the one I had spoken with on the phone came into the room. Three o’clock shift change.

“Patti took a tumble this morning, didn’t you Patti?” The nurse said in that tone that made me want to choke her. She turned to me. “You can stay as long as you like. Don’t worry about the time,” she smiled.

Alarm bells pealed in my head. My daily visits had been restricted to between one and three in the afternoon since February 2015, and today Nurse Ratched was saying I could “stay as long as” I pleased? Mom must be dying. Why didn’t they take her to the hospital?

“Have you seen Gran?” I asked Mom. “She’s taking care of you.” My voice cracked. Tears threatened.

I thought music might help (as it usually did), so I asked if she would like me to sing her a song. She said yes. My voice caught in my throat again as I began, and I was astonished at what happened next.

I checked in on her physical and mental state (she said she wasn’t in pain, nor was she hot or cold), and acknowledged the frustration she must be experiencing.

I asked if I might clean her mouth; it looked as if it were bleeding. I cleaned it a bit with a warm cloth, and then launched into “Take me out to the ballgame.”

Whenever her agitation seemed to be mounting, I began a new tune. She joined in every time. She knew all the words. We repeated “When you Wore a Tulip” several times; we also sang the “Battle Hymn of the Republic,” “Baa Baa Black Sheep,” “Mary Had a Little Lamb,” “Ring Around the Rosie,” “Three Blind Mice,” and others. This, despite her not being able to enunciate individual words, let alone string them together in an intelligible sentence.

I brought her several glasses of water, and helped her to drink because she couldn’t move her right arm. She kept accepting more water, which finally staunched the bleeding in her mouth. Why aren’t they hydrating her? Why is she bleeding in her mouth? Has she broken some teeth?

My best efforts to be brave and hide my tears failed on several occasions, even though it looked like Mom seemed better than I had originally thought when I arrived. After about an hour, the charge nurse returned to say the person who was in legal control of Mom’s care would be coming. Time for me to go.

“Remember that I love you,” I said to Mom. “And I’ll be back tomorrow.”

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

https://myalzheimersstory.com/2018/07/28/jillian-jiggs-and-a-mind-of-her-own-july-27-2016/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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“good pleasure” #lastmonthwithmymom 16/07/16

July 17, 2018: One month from today, August 17, 2018, will be the second anniversary of Mom’s death. I’m looking back at our last weeks together with joy, sadness, anger, gratitude and bittersweet grief. I intend to share some of my feelings, observations and experiences of that time two years ago over the next four weeks.

~~~~~~~~~~~~~~~~~~~~

I found Mom in a deep sedated slumber on the afternoon of July 15, 2016, so I left without attempting to wake her. The next day, the sixteenth, I decided to flout the time restrictions that had been placed on me (as I often did), and got there at 3 p.m. (when I should have been leaving instead of arriving). I knew the chances were good that Mom would be awake at that time. I was right. She was awake; and she was delighted to see me:

I was still concerned about the wound on her leg and the dressing they had put on it, but I didn’t make much of it, because I didn’t want to upset Mom. Rather, since she was so up and energized, I chose to make the most of the afternoon.

Mom loved the time we spent together, it’s clear from the sound of her voice. To deny her that joy when she had so few pleasures, and when her world had become so small, was cruel and abusive beyond measure, particularly as the arbitrary rule was nothing more than an exercise in power and control by the administrators of Mom’s Dementia Jail and the person who was in legal control of her care.

Mom and I extracted good from the evil that was wrought upon us. These are snippets from the rest of our afternoon on July 16, 2016:

Some people might mistakenly believe that this kind of play is infantalizing. Or they might think it sad that Mom couldn’t do all the things she once could. I thought it best to generate as much positive energy and happiness as I could, and I did whatever it took to do that, especially as most days I found her like this because of the inappropriately prescribed antipsychotics:

I knew the things we did together made Mom happy because she often told me so in her words, actions and expressions just as she did at the end of our afternoon on July 16, 2016:

The sound of the beeping and You Are My Sunshine playing is the pressure sensitive alarm pad on her wheelchair seat going off and being reset when Mom stood up and then sat down again – another form of physical restraint. The tapping and clapping was Mom’s way to express love, approval, energy and happiness; she was discouraged from doing it by the staff and nurses and it was sometimes interpreted as “aggression,” a label which was then used to justify her being medicated.

During the last five years of her life, Mom inspired me with her spirit, love of life, courage and determination. I’m grateful for the extra time we were able to spend together, which was a direct result of Alzheimer disease. It was a silver lining that so many people miss. We created joy, healing and “good pleasure” amidst the hardship and challenges. We were lucky. Too many people living with dementia are left to die long before they’re dead.

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations, and find ways to create joy amidst the tragedy.

https://myalzheimersstory.com/2014/09/07/the-main-thing-is-to-keep-going/

https://myalzheimersstory.com/2017/04/05/dont-mourn-me-long/

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i still smell the stench

July 13, 2016, was a scorcher. And when I went to visit Mom in the afternoon, the heat made the stench of the dressing on her leg even more disgusting than it otherwise might have been. I gagged.

I had contacted the dressing supplier months before and had been told this type of dressing should be changed if the “perimeter were breached.” Bloody liquid was leaking in feathery rivulets from the edge of this one.

It was impossible to know how long it had been on as the dressing wasn’t marked with the date it had been applied, which it should have been – that’s part of good practice.

There was no point complaining to the charge nurse. “That’s just the way it is,” another one had said to me the last time I dared to make an observation about Mom’s unsavoury wound care.

Besides fighting unsuccessfully to get Mom off the antipsychotics she was being inappropriately prescribed, I’d also been fighting, also unsuccessfully, to get them to stop using this particular type of dressing on her wounds, which seemed to make them worse instead of better, and which lengthened rather than shortened the healing process. All of it was to no avail.

But I did what I could. I sat with Mom for the better part of an hour, as I did virtually every day even though she was “asleep” in the midst of the TV racket. I told her what I saw, even though she couldn’t hear me. When she awoke, I checked on how she felt, tried to comfort her, and asked her what she might want:

When I left to get Mom a glass of water from the bathroom in her shared room, I found a soiled and stinking incontinence brief in the garbage container. There were a couple of wet washcloths — one white, and one blue — on the floor beside it.

Meanwhile, a bevy of student nurses was happily occupied handing out ice cream cones to the residents on the main floor.

By the time I left, I was furious. As I drove home, I vented to no one in particular:

Do you have a family member, friend, or someone you know in long-term care? Have you seen neglect and abuse firsthand? If so, please speak out against these human rights violations.

https://myalzheimersstory.com/2018/07/15/19-ltc-human-rights-abuses-i-hope-quebec-will-have-to-pay-for/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Antipsychotic drugs, Toward better care

19 ltc human rights abuses i hope quebec will have to pay for

Mom drugged into catatonic state on 151223, just as she was virtually every day

On July 10, 2018, the Quebec Council for the Protection of Patients and co-plaintiff Daniel Pilote (who is a long-term care resident in Quebec), filed an application for a class-action lawsuit that targets care facilities (CHSLDs) in Quebec, Canada (more here).

Larochelle Avocats, the lawyers taking the case forward, list 19 potential breaches of the Quebec health care act in an online form that invites Quebeckers with family in long-term care in the province to participate in the class action.

My mother experienced 11 of the neglectful and abusive practices on this list, as well as others which I would also consider to be neglect and abuse, while in a private Quebec nursing home (aka DementiaJail).

Here’s the starter list of 19 neglectful and abusive practices that violate LTC residents’ human rights according to the law firm:

  1. Inadequate or infrequent bathing
  2. Incontinence pads not changed frequently enough
  3. Forced incontinence
  4. Unsatisfactory dental hygiene
  5. Lack of dental treatment
  6. Incompetent or insufficient bedside care and/or basic hygiene
  7. Having to pay for services or goods which should be included in the cost of care
  8. Inadequate medical follow-up
  9. Medication mismanagement
  10. Inappropriate use of antipsychotics
  11. Excessive use of physical restraints
  12. Lack of physiotherapy
  13. Inadequate and/or poor quality meals
  14. Rushed and/or rigid mealtimes
  15. Staff requesting payment “under the table”
  16. Disregard for the right to sleep
  17. Rough treatment during transfers
  18. Isolation
  19. Forced to pay for air-conditioning in the summer

I have applied to be part of the class action suit, and I will actively participate if it goes forward. This is the kind of drastic action we need to take in order to create change.

Do you have a family member, friend, or someone you know in long-term care? Have you seen any of these practices firsthand? If so, please speak out against the violations of their human rights.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2017/12/27/dont-fence-me-in-a-true-story-about-the-impact-of-physical-restraints-on-my-mom-who-lived-with-alzheimer-disease/

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Advocacy, Poetry, Toward better care

safety pins & call bells

June 23, 2018: I discover one of my mother’s nightgowns buried in a plastic bag in the back of a closet when I’m packing to move. There’s a pair of shoes (black patent leather), a black and white polka dot skirt, and a white blouse in the bag too. They were all hers.

I pull out the nightgown. It’s soft in my hands. “Snuggly,” Mom would have said. I lift it up to my nose, inhale.  It doesn’t smell like Mom. It smells like jail, even now, after two years. I hold it up in front of me, at arm’s-length. It’s white with light blue flowers, a round neck, white embroidery across the upper chest,  and four white buttons down the middle.  It’ll fit. I sleep in the buff, but I could wear it on winter mornings when I get out of bed.

I turn it around, see the small irregular holes at the shoulders, and a jagged line of haphazard stitches that close a tear about two inches long where it would have spanned Mom’s shoulder blades.

I take off my shirt, and slip the nightdress on. The institutional odour becomes stronger; I feel a little queasy.  Then, unbidden, the first line of a poem speaks itself…

safety pins & call bells

©2018 punkie

safety pins & call bells

i put on your nightgown, the one with blue flowers
it reeks of the jail where top dogs love power

there are holes at the shoulders that safety pins tore
when you got up at night, and tried to walk out the door

but the pins were attached with chains to the wall
you pulled them so tight, they rang bells meant to call

someone might come, but not in time to prevent
the pins that weren’t safe from your dress to be rent

if ever they got there, you’d be out in the hall
they’d scold and admonish, say “you’re going to fall!”

“get back to bed, lie down, go to sleep!
out come the meds if i hear even a peep.”

i didn’t get then, what caused the holes in your clothes
seems neglect and abuse sported ribbons and bows

the flannel was stitched in the laundry below
nurses answered my questions with lies and “don’t know”

but the truth is revealed in weeks, months, and years
follows the light and the tracks of my tears

the pins ripped the fabric, and hastened the end
caused me to fight, and human rights to defend

now i slip on your nightgown, the one with the scars
and thank god you are free of the chains and the bars

©2018 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

The safety pins, chains, ribbons and call bells did not prevent falls and injuries as is clear from the cuts and bruises beside Moms right eye.

 

20 questions to ask when a care partner or resident walks around at night

don’t fence me in: a true story about the impact of physical restraints on my mom who lived with alzheimer disease

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