Advocacy, Death & Dying, Life & Living

a young hospice nurse makes a promise to her dying patients

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.

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

3 things to know when you can’t be with someone you love as they are dying

understanding the suffering associated with dying

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Advocacy, Care Partnering, Death & Dying, Love

hilda zlataroff should have died of old age

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.”

dying with my mom

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

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

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Advocacy, Death & Dying, Life & Living

3 things to know when you can’t be with someone you love as they are dying

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:

  1. Not being in the room at the time of death does not mean you are absent at the time of death
  2. You are connected in spirit and in soul to the people you love
  3. Connection does not require physical proximity

When a family can’t be be present at the death from Canadian Virtual Hospice on Vimeo.

 

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

understanding the suffering associated with dying

dying with my mom

 

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Death & Dying, Poetry, Real life

euthanasia

Pia Roma sitting on my VariDesk in 2017. She was an excellent catssisstant ❤

June 26, 2019: I wrote this a month or two before I had to put little Pia Roma to sleep on June 29, 2018. I was in anguish for months, hoping she would die a natural death before I had to euthanize her so she wouldn’t suffer. Pia had been Mom’s beloved companion for about eight years, and then mine for seven after Mom went to #DementiaJail.

I still miss her by my side.

euthanasia

This poem is dedicated to everyone who has had to put a beloved animal member of their family to sleep.

©2018 punkie

euthanasia

your heart beats strong
as the hours grow long
softly you do stride
through this life
with all its strife
and troubles to abide

a feline muse
clothed in silver hews
with golden eyes moon-wide
you helped me write
through days and nights
lay patient by my side

and we played with string
ran around in rings
laughed until i cried
while disease within
like original sin
consumed, then health denied

though it’s humane
to ease the pain
when everything’s been tried
that you must leave
me here to grieve
sickens me inside

friends say i’ll know
when it’s time you should go
but how shall i decide
to cause you to sleep
in the eternal deep
as if god’s hands were mine

 

©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.

after i put them in prison, mom’s bff became mine

one little kitty’s top dementia care tip

7-part palliative care plan works (for people AND cats)

the paws that refreshes

 

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Death & Dying, Life & Living, Poetry

eternal anguish

At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.

This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.

eternal anguish

©2019 punkie

eternal anguish

please take her lord,
oh no not yet!
i’m afraid
i might forget

how she smiles
and laughs and cries,
it’s not the time
to say goodbye

but I can’t bear
to see her so
perhaps today
is when she should go

is it selfish
when i wonder
how long before
she’s six feet under?

oh my god
don’t take her now
no, this can’t be
her final bow

let us play
another scene
in which she doesn’t
lay serene

a corpse upon
a broken bed
that’s not my mom
she can’t be dead

she’s the one
who gave me life
who saw me through
both joy and strife

don’t take her god
i need her here,
by my side
forever near

i promise lord
that I’ll be good
and do exactly
as I should

i won’t lie
or kill or loot
or disrespect
an older coot

i’ll love my neighbour
guaranteed
if only you will
set her free

to dance and sing
like we once did
when I was no more
than a kid

please don’t take her
oh no please don’t
i wish you would,
and that you won’t

i know deep down
it’s peace she seeks,
every day
week after week

she craves her home
amidst the stars
her life beyond
these prison bars

but when she breathes
in fits and starts
who will call
the funeral cart?

in this game
where life’s at stake
we’re helpless
to decisions make

it’s in your hands, god,
you call the shots:
undo this heart
tied up in knots

around the rosie
we will sing
lord have mercy
you are the king

 

©2019 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.

a daughter’s prayer to god

don’t mourn me long

dying with my mom

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Advocacy, Death & Dying, Life & Living

the truth behind my mother’s death: august 16, 2016

A blossom fell from off a tree, it settled softly on the lips you turned to me. The Gypsies say, and I know why, a falling blossom only touches lips that lie,” Nat King Cole crooned from the CD player beside Mom’s bed.

She roused slightly and mumbled a bit when I walked in, and I tried to make some room for myself to sit beside her on the bed. I sang along to the next songs on the disk: Ballerina, Mona Lisa, Walking My Baby Back Home, and Sentimental Reasons, songs I hadn’t known existed before I started listening to “Nat” with Mom in the fall of 2011. We had listened to and sung these songs together hundreds of times since.

Mom lay there quietly, a blank-ish look on her face. Her eyes were half shut.

“Would you like me to read you a story Mom?” I asked when Nat had finished his gig. No response. “How about Jillian Jiggs, Mom?” No answer.

“Let’s give it a try, I said. I read her Jillian Jiggs. She was silent at the parts where she usually chimed in with the rhymes. “Are you okay Mom?” She replied with a barely audible “Yeah.”

Over the next twenty minutes or so, I asked all the usual questions at intervals (How are you feeling? Are you tired? Do you want to go to sleep? Can I get you some water? Are you hungry? Do you want a cookie?). They elicited little if any response. At one point, I got her to drink some juice, which she consumed in several long drafts, just as she had done in the days prior.

“You were thirsty Mom,” I said. After that, I too fell silent. I read a book I’d brought along with me in case she was asleep. I don’t remember what it was.

“Mom,” I said after sitting beside her for another twenty minutes as she drifted in some in-between world. “I’m going home now. You stay here and rest.”

No response from her side. I gathered up my stuff — the book, my purse, and my iPhone.

“Take care,” I whispered in her ear just before I left. “I love you. I’ll see you tomorrow.”

On the way out, I stopped to talk to Roger,* his mother, his aunt (who was also a resident), and his aunt’s daughter. They asked me how Mom was. “Not great,” I said. They commented on the strange tilting of her head, asked what caused it. “I think it’s the meds,” I said.

“Did you hear Ellen* died?” Roger asked. “Rebecca’s* sister.”

“No! Ellen was in perfect health.” I was stunned.

“She fell at home,” Roger said. “They didn’t find her for a few days. Rebecca fell the other day too.”

“How could Rebecca fall?” I said. “She’s got that table tray across the front of her wheelchair. She’s locked in.”

“They were moving her, using a strap of some kind, and the strap broke.”

“Oh my God.” Poor Rebecca.

“It’s like your Mom,” Roger said. “Your mom was in the washroom. So why was the caregiver on the other side of the room? She should’ve stayed with the patient.”

I must have looked confused because Roger continued: “When your mom fell…”

“She was in the washroom?” I said.

“The caregiver was over by the window, the far window,” Roger said.

The far window was diagonally opposite the bathroom in a corner of the double room Mom shared with another resident. If the caregiver had been at the window, and Mom had been on the toilet in the bathroom, they would have been about twenty-five feet apart, and not within a direct line of sight. I cast my mind back to the day of the fall.

“Your mom had a seizure this morning. The caregiver tried her best to catch her before she fell, but she didn’t get there in time,” the charge nurse  told me on the phone. The caregiver tried to “catch” her? She didn’t get there in time? Where was she? WTF?

“She was on the toilet?“ I said to Roger to confirm.

“Hmhm.” Roger signalled his agreement. “You knew that didn’t you?”

“No I didn’t,” I said. “They didn’t tell me. They said it was just after her morning hygiene care. So I was under the impression that she was in her wheelchair. But she was sitting on the toilet, and the caregiver had left her there?”

“She was in the bathroom,” Roger said. “I assume that’s why she tried to get up…”

“They told me she had a seizure,” I said.

“Not at all,” Roger said.

I wanted to make sure I had understood everything clearly, so I repeated it: “So you heard that she was on the toilet, she stood up and then she fell? You heard nothing about a seizure?”

“Not a word.”

“Who told you?”

Roger gave me the name of the person who had shared the information with him.

Now I could piece together what had happened: Mom had been left alone sitting on the toilet. She had tried to stand up and walk on her own; she fell; and then she may have had a seizure. The caregiver had been unaware of what was happening until she heard the sound of Mom hitting the floor or the sink or the towel rack or her wheelchair or whatever, and then, more than likely, Mom screaming in pain and fright. The caregiver had dropped whatever she was doing, and rushed to find Mom already on the floor in the bathroom or maybe just outside of it. A part of the information that had been given to me may have been technically true, if Mom had indeed had a seizure after she fell.

But if she did have a seizure, it didn’t happen “out of the blue” as had been implied. If she’d had a seizure, it had been caused by a fall in which she hit her head, and broke her right arm. The fall had been the result of being left alone on the toilet, which should never have happened because she wasn’t able to walk on her own anymore. She wasn’t able to walk on her own anymore because the dementia jailers didn’t want her to walk on her own as it was inconvenient for them, and so they sedated her with antipsychotic drugs (using “behaviour” as an excuse), until she was catatonic for five hours a day, and when she was awake her balance was so precarious, also due to the drugs, that she was eventually confined to a wheelchair. Because she was confined to a wheelchair, and no one but me and Sally* and Ingrid* helped her to get up and walk, she lost the ability to do so, and that’s why she had fallen in the bathroom trying to get up from the toilet where a caregiver had left her alone knowing full well that she frequently tried to stand up despite the fact that she couldn’t do so without assistance.

Of course we’ll never know one hundred percent for sure what happened in Mom’s room on the morning of July 26, 2016, because there were no witnesses. Nor was there a CCTV or video camera to record the sequence of events.

“I’m glad you told me,” I said to Roger. “I knew they had lied to me. Why can’t they just tell the truth? It’s beyond me.” It was a rhetorical question. But Roger answered anyway.

“Because they don’t want you to know the truth. Because they’re protecting themselves. You’ve gotta come in every day,” Roger said. “And even then, you can’t keep track of everything.”

Mom died on August 17, 2016, the day after Roger told me what he’d been told about her fall three weeks before. I haven’t seen or spoken to him since, but I’m thankful to him for giving me the missing piece of the puzzle of how Mom came to be so battered and traumatized.

Mom lived with Alzheimer disease, but she didn’t die from Alzheimer disease or even of the complications of Alzheimer disease. The July fall and the resulting injuries weren’t the real cause of her death either — they were the almost inevitable culmination of four years of neglect and abuse.

The truth is, Mom died of inadequate institutional dementia care.

the dystonia did us in: august 15, 2016

dying with my mom

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living

the dystonia did us in: august 15, 2016

Six days earlier, Mom had told me she was comfortable with her chin to her chest and her eyes unable to shift their gaze from the floor. Three days earlier, she had said she was comfortable with her head tilted back, eyes permanently fixed on the ceiling. But on August 15, 2016, Mom was uncomfortable, and I was at a loss.

Her body was again pulled into the shape of a question mark by a condition called dystonia that was almost certainly a result of the prolonged and inappropriate use of  the antipsychotics risperidone and quetiapine, which she had been forced to take against her will and mine in dementia jail.

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Writing about this abuse enrages me, even though it’s been three years since her death. It was so cruel and unnecessary.

Besides the contortion of her neck and upper torso, the lower part of her left leg, her ankle and her foot were severely swollen. The wound on the same leg was as disgusting as it had been two days prior, and her broken right arm was still in a sling hidden beneath her shirt. I tried my best to help her, but there was nothing either of us could do, much to our mutual frustration:

The one thing I could do was to get her some juice and help her drink it, which I did. She sucked down two full cups through a straw. She must have been parched. I sang several songs to her, and she joined in for a line or two on each one, but clearly it was difficult. It’s challenging to breathe, let alone sing when your chin is on your chest and your windpipe is constricted:

At one point I asked Mom if she could spell the word “box.” B-O-X she said, pretty as you please. The irony of my choice of words comes back to haunt me now.

We spent the better part of the hour and half we were together that day in silence. The dystonia got the better of us.

“I’m going to put this blanket in your room Mom,” I said when I took her back up to the second floor and left her with one of the caregivers.

“Bye,” I called over my shoulder as I walked down the hall toward her room.

“Bye,” Mom said softly.

one last sing-along: august 13, 2016

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living

one last sing-along: august 13, 2016

Mom was in bed when I arrived on August 13, but she was articulate, alert, responsive, and in good spirits, despite the fact that her speech was slurred just as it had been a few days earlier.

When I complimented her on her hair and told her she was beautiful, she took exception:

Mom’s feistiness meant it was a perfect day for Eric to come over. I called him immediately and then told her the plan:

Two caregivers helped me move Mom from her bed to her wheelchair, and I took her downstairs to have tea and chat with Shirley while we waited for Eric to arrive. We had ginger snaps, and talked about the weather.

Eric brought his guitar and we sang a whole whack of our favourite songs: Mrs. Brown You’ve got a Lovely Daughter, I’ve Been Working on the Railroad, Ain’t She’s Sweet, ’Til There Was You, Rock Around the Clock, Oh What a Beautiful Morning, Clementine, Somewhere Over the Rainbow, How Much Is that Doggy in the Window?, I Wanna Hold Your Hand, Mona Lisa, Goodnight Irene, and Would You Like to Swing on a Star? Mom knew some or all of the words to every one; I captured a few moments on video:

We were so lucky to have had Eric and his healing music during the last four years of Mom’s life. I will be forever grateful for that.

like puppets on a string: august 12, 2016

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living

like puppets on a string: august 12, 2016

Three days before, Mom had been curled up in the shape of a question mark, like an aged female Quasimodo in a wheelchair. But on August 12, 2016, it was the opposite: her head was drawn back until the front of her neck was stretched taut.

Over the previous two years, once she had become confined to a wheelchair because of the antipsychotics she was being forced to take against her will and mine, she often tilted to one side or the other and couldn’t be straightened.

“It’s the progression of the disease,” the nursing staff and caregivers told me. I didn’t believe them. It didn’t make sense because of the way it came and went: one day she would be fine, and the next the leaning Tower of Pisa.

A little research confirmed what I already suspected: another side effect of the risperidone (Risperdal), and quetiapine (Seroquel), related to the tardive dyskenisia I had watched Mom endure for months. But I’d never seen her like this, with such dramatic and debilitating contortions.

She said she was comfortable, but it was difficult for her to eat, drink or swallow in either position, and she was at huge risk of choking (just try it and see for yourself!).

On August 12, I asked her if she could move her head forward. She answered in no uncertain terms:

My #PINK kiss on Mom’s cheek

Later, I sent pictures to a prominent geriatrician, highly skilled in the use, abuse, and effects of antipsychotic medication. “In the days before Mom died,” I wrote, “her body ‘contorted’ in an odd way (i.e. Some days she slumped forward, others she arched back). Any ideas as to what might have caused this? She seemed unaware of the contortion, and said she was comfortable.”

His response didn’t surprise me:

“Later in the course of dementia, muscular control and posture can be affected. But if someone is on antipsychotics, there are also movement disorders that can be caused by the meds. Dystonias may include prolonged contraction or extension of muscle groups, leading to posturing or contortion, and can occur as an alternate side effect to the dyskinesias that are commonly seen with these drugs.”

What happened to Mom was not caused by dementia. Of that I am absolutely 100 per cent certain. I have no doubt whatsoever that the contortions were the result of the long-term inappropriate and completely unwarranted use of antipsychotic drugs to chemically restrain my mother. It was abuse. Full stop. This should not have been nor should it continue to be tolerated. No way. No how.

Meanwhile, a wound on Mom’s left leg was being “treated” with a dressing I had repeatedly objected to. The manufacturers had told me the dressing should be changed if there was a bad odour or if the fluid inside was yellow or green. The wound on Mom’s leg stunk to high heaven, and it looked like this:

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My mother and I were like puppets on a string. She was controlled by the drugs she was being given, and I was controlled by the threats of being denied access to her as punishment for advocating for the care she wanted and deserved.

In less than a week, the strings would be cut and we would both be free.

my mom is a question mark: august 9, 2016

the beginning of the end: july 26, 2016

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Advocacy, Death & Dying, Life & Living

it wasn’t what she said, it was how she said it: august 10 & 11, 2016

It was fairly easy for me to tell when Mom had been inappropriately and/or overly medicated.

She was either “asleep,” or her whole demeanour changed, and/or she simply couldn’t say what she wanted. When I say she couldn’t, I mean in a physical sense. Getting her words confused and talking gobbledygook was one thing, that was a “natural” brain to mouth communication short circuit of some kind.

But slurred speech and the inability to clearly articulate words that could be more or less understood, even though they may or may not have made sense, were different things entirely. They were drug induced, and it was easy to know when she was medicated and when she was not.

On August 10, 2016, a week before she died, it was clear Mom had been given more drugs than usual for some unknown (to me at least) reason. You don’t have to be a rocket scientist to tell the difference.

Here’s Mom and I conversing on August 9:

Now listen to her speech the very next day (August 10) when, even though I’m able to decipher her meaning, the effects of the increased medication are unmistakable:

Now compare this with her capacity to speak two days later, on August 12:

I could deal with the aphasia. I could deal with her thought processing challenges. I could deal with the stuff associated with Alzheimer disease and the resulting dementia.

But I couldn’t deal with my mother being inappropriately medicated, neglected and abused in the multiple ways she was. Sometimes it was just too much for me to witness on top of everything else. After the experience of August 10th, I couldn’t visit on the 11th. I just didn’t have the strength to do it, so I stayed away for both our sakes. I’m so grateful I did because it gave me the wherewithal to be with her for five of her last six days.

my mom is a question mark: august 9, 2016

the beginning of the end: july 26, 2016

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