Advocacy, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

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:

a magical musical alzheimer gift

And this one was just four days before Mom died on August 17, 2016:

one last sing-along: august 13, 2016

I miss you Mom.

50 more pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Advocacy, Care Partnering, Toward better care

50 more pics that prove my mom was neglected and abused in long-term care

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.

The neglect included not having her incontinence pads changed as frequently as they should have been, having the pads put on backwards, not having wounds properly dressed and not having the level of one-on-one care she required.

The abuse consisted primarily of being chemically restrained with antipsychotic drugs (which caused her to stumble, bump into things, fall and sustain a continual stream of injuries), and being physically restrained with recliners, wheelchairs, and various types of alarms.

These fifty photographs (all taken in 2014), show what this neglect and abuse looked like.

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If you have a family member in long-term care:

  • learn what constitutes neglect and abuse
  • visit often at different times of the day
  • watch how staff treat other residents
  • document what you see and hear
  • advocate for proper care

25 pics that prove my mom was neglected and abused in long-term care

four years later is too late for my mom. but it’s not for others.

alzheimer disease didn’t do this. drugs and dementia jail did

10 reasons why neglect and abuse of elders with dementia may be the norm rather than the exception in long-term care facilities

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

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Advocacy, Care Partnering, Toward better care

who is responsible when people living with dementia are robbed of their dignity in long-term care?

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.

Robbing someone of her or his dignity is tragic. Neglect and abuse are criminal. Those who are responsible should be held accountable.

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.

which way to the bathroom?

hail mary i need to pee

5 ways we rob people with dementia of their dignity

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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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Care Partnering, Hope, Inspiration, Joy, Love

5 powerful dementia care lessons i learned being my mom’s care partner

Being my mother’s primary care partner in various ways for ten years was one of the hardest things I’ve ever done. It was ultimately also one of the most rewarding in that it provided me with countless learning opportunities. I’ve blogged before about the joys, the difficult emotions and the lessons I and other dementia care partners have learned; here are five more:

1 ) People are people, not furniture

A changing brain does not suddenly make someone less than human, less what they were before their brain started to change, or less deserving than anyone else. People are people, no matter the condition of their brain, or their body. They have rights, needs and wants, just like the rest of us do. Recognizing and fulfilling those rights, needs and wants are societal and communal responsibilities.

2 ) Stigma destroys the stigmatized

Stigma can be more destructive and devastating to a person’s well being than a terminal illness. Stigma causes many people who live with dementia and the people who care for them to become isolated, sometimes even shunned by family and friends. This isolation is often more damaging to people who live with dementia and their care partners than the condition itself. Changing the way we see dementia and the people who live with it is one of the most powerful ways we can positively impact the well being of those who live with the condition.

3 ) Life is challenging

The challenges we face in life provide opportunities for us to learn, grow and become better people. The challenges of living with dementia and/or being the care partner to someone who lives with dementia are like other life challenges in the sense that they also provide opportunities for us to learn, grow and become the best we can be. It’s up to us to find the opportunities in the challenges we face.

4 ) We are not dead until we die

This seems obvious. Nevertheless, others treat many people who live with dementia as if they are already gone. I believe that treating someone as if they are not here when they still are increases the chances that they will decline at a faster rate. People need attention (via words, deeds and touch) to know they are loved and appreciated. Treating people with love, compassion, understanding and tender care will improve their well-being and boost their ability to thrive, even as they near the end of life.

5 ) Not needing to be recognized increases the chances you will be

When friends and family let go of the need to be recognized by a loved one who lives with dementia, I believe the chances that the person living with dementia will recognize them increases. My theory is unproven and based on my own experience, but I feel strongly that it’s true. When we let go of the need to be recognized, we become more relaxed, more loving, and more open to possibility, all of which impacts those around in a positive way and creates an environment in which positive interactions are more likely to occur.

What lessons have you learned?

top 15 things dementia care partners say they’ve learned

5 Uplifting Emotions Felt by Alzheimers Dementia Care Partners

5 Raw Emotions Alzheimers Dementia Caregivers Feel Every Day

17 links to the “other side” of dementia

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Care Partnering, Hope, Inspiration, Joy, Love

courageous vangaros united by love in life and death

Pops and Vince Vangaro

Albert Anthony “Pops” Zangaro

April 1st, 1942 – April 10th, 2018

For fourteen years, Vince Zangaro cared for his “Pops” who lived with Alzheimer’s disease. During that time, Vince developed a deep and abiding love, compassion and a gentleness of spirit that endeared him to care partners around the world. He shared some of his feelings on Facebook the day he and his family said farewell to Pops.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspired and will no doubt continue to inspire thousands.

As Zangaro and his family approached their final days together, Vince took the time to recognize Chappie Bird, his father’s feathered friend. Here’s that Facebook post as well:

See a video of the Zangaro family caring together here.

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Care Partnering, Hope, Inspiration, Joy, Love

son thanks pops’ caregiver bird at alzheimer’s end

Vince Zangaro is an extraordinary person. He’s cared for his “Pops” who lives with Alzheimer’s disease for fourteen years. During that time, he has developed deep and abiding love, compassion and a gentleness of spirit that have endeared him to care partners around the world.

Besides being the primary care partner to his father, Zangaro is a musician and the main driver behind the Alzheimer’s Music Fest. His posts and videos documenting the loving care he and his wife Amy give Pops inspire thousands.

Now, Zangaro and his family are approaching their final days together, and true to form, Vince takes time to recognize Chappie Bird, his father’s feathered friend. Here’s the Facebook post:

See a video of the Zangaro family caring together here.

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Hope, Life & Living, Love, Poetry

do you know the alzheimer’s alphabet?

Being a dementia care partner has its ups and downs, and often carers seem to have a harder time of it than even those with dementia they suffer to love.

On the other hand, many of us find healing, love, compassion and even joy in our role as care partners. I created this tongue-in-cheek A to Z poem to mark World Alzheimer’s Day 2017, and to celebrate, encourage and connect with care partners everywhere.

I hope you enjoy it.

the alzheimer’s care partners’ A to Z

 

A is for Alzheimer’s, the disease we all hate
B is for bravery in the lives we create

C is for courage, compassion and care
D is for denial when life seems unfair

E is for energy to live day by day
F is for friends, and family and faith

G is for going with whatever the flow
H is for hope, and helping flowers to grow

I is for imagining your care partner’s shoes
J is for joy and not crying the blues

K is for kindness, kibitzing and kids
L is for love, and not flipping our lids

M is for music, and feeling half mad
N is for never letting things get too bad

O is for oxygen – put it on yourself first!
P is for patience that stops stuff getting worse

Q is for quiet we get when we pray
R is for respite and relearning to play

S is for sanity and preserving your own
T is the time before loved ones have flown

U is for understanding it’s not about us
V is for validation and how it’s a plus

W is for warriors, and finding your way
X is for Xtra, and vision X-ray

Y is for you and all that you do
Z is for zonked and needing a brew!

Click on the image below to dowload the PDF

© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.

Subscribe to my free updates here.

Advocacy, Care Partnering, Life & Living, Real life

what a difference an E makes by c. stuart-cole

C. Stuart-Cole, whoever she or he is, is clearly brilliant. She or he has captured in this insightful and provocative drawing that is at once simple and complex, as well as heart breaking and motivating, the essence of how the work of millions (and it is literally millions) of care partners is devalued and under-appreciated. I know it will resonate with care partners worldwide and so I’m sharing it so each and every one will know that C. Stuart-Cole gets it. And I get it. And the care partner community everywhere gets it to.

Carers: you may be one E short, but what you do matters more than you will ever know. Thank you.

My plea below was answered, and somehow Caron Stuart-Cole found me on January 1, 2018. An auspicious beginning to the new year. Her Facebook page is here.

I tried to track down C. Stuart-Cole after I stumbled across her/his work somewhere online, but so far without success. Do you know her/him? Do you know someone who knows someone who does? I would love to find this talented artist and thank her/him for this awesome piece of understanding, and get her/his official permission to keep it on my blog. Can you help me find C. Stuart-Cole?

I didn’t find her, she found me! She’s here.

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Death & Dying, Life & Living, Poetry

let me weep

No one escapes grief and suffering. But a good number of dementia care partners seem to have more than their fair share. Many are devastated by what they experience as the slow and cruel death of loved ones as they watch them disappear before their very eyes.

I’m fortunate to have never felt like my mom was disappearing, or that I had lost her, or that she was “a shell.” Rather, in some ways I felt she was more her true self than ever. So I didn’t mourn losing her as she lived with dementia, together we made the best of it. But I do mourn her death, maybe I always will.

Care partners express grief, mourning and loss in different ways. One of them is to cry. I’ve always been okay with tears, maybe because I’m well-practiced at crying, which I do randomly on a regular basis. I embrace tears no matter their source, just as I try to be fully present in all of my emotions–not always easy, but rewarding nevertheless.

This poem is about grief, sorrow and tears, and how sometimes it’s good to just let them be.

let me weep

© 2017 punkie

if i should cry
please let me be
it’s just the grief
you cannot see

a pit, a chasm
of black despair
in which i clutch
and gasp for air

the canyon widens
through my chest
its river a torrent
of waves and crests

please leave me here
awash in sorrow
and let me weep
until tomorrow

 

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

https://myalzheimersstory.com/2016/12/14/missing-you/

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

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