Care Partnering, Inspiration, Love, Music

happy birdday mummy

Mom was born on September 27, 1928. If she were still alive, she would have been 94 today, September 27, 2022.

On her birthday in 2015, her last one here on this earth, I visited her in jail, just as I did almost every day for several hours for four years. Here’s how I greeted her and how she responded:

Mummy is what she called her own mother. The full and wonderful story of what happened on her last birthday may be read at the three posts below (or here, here and here). Not surprisingly, reading them again just now made me cry ❤

it’s better to be queer on your deer than funny on your bunny on your birthday

put a candle on a cupcake and see if you feel as lucky as my mom

love comes in all shapes, sizes and colours including small, furry, and black and white

Advocacy, Care Partnering, Interviews, Videos

what are the challenges and benefits of involving patients in healthcare education?

The obvious answer to “what are the benefits of patients, care partners and healthcare providers working together?” is that collaboration produces better care.

What is required for good collaboration between those who care and those who are being cared for ? I believe open minds, curiosity and humility are the cornerstones for creating a good care experience for all concerned.

More in the video below on my answer to the fifth question in the project aimed at developing educational materials for students enrolled in the healthcare faculty at a local university. 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

Processing…
Success! You're on the list.

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

how are you involved in educating healthcare providers and what are your experiences?

I learned a lot during the time I was a care partner to my mom who lived with dementia at the end of her life. I share many of the things I learned on this blog. I’ve also done workshops and webinars to help care workers and students better understand the nature of dementia and the people who live with it.

When I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university, I shared my experience about sharing my experience!

When the interviewer asked if I had been involved in educating healthcare providers (the fourth question in the interview), I told her of my experience as well as what has worked for me: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

5) What are the challenges and benefits of involving patients in healthcare education?

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

what do healthcare providers think about including patients in healthcare education?

Both healthcare providers and patients must participate in the care process to make the system work well. Achieving participation and collaboration from both “sides” requires an adjustment in the mindsets of all involved.

This is the essence of my answer to the third question I was asked when I was interviewed with respect to the development of educational materials for students enrolled in the healthcare faculty at a local university.

When the interviewer asked “What do you think healthcare providers think about including patients in healthcare education?” I answered frankly that everybody needs to take a different tack if we are to achieve success: 

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with my answers to the other questions:

1) “Why should we involve patients in healthcare education?”

2) How should we involve patients in the education of healthcare providers?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

Advocacy, Care Partnering, Interviews, Videos

how should we involve patients in healthcare education?

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

I answer the second question “How should we involve patients in the education of healthcare providers?” below.

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

1) “Why should we involve patients in healthcare education?”

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

why patients and care partners should be involved in healthcare education

what do healthcare providers think about including patients in healthcare education?

Advocacy, Care Partnering, Interviews, Videos

why patients and care partners should be involved in healthcare education

When I was invited to contribute to the development of educational materials for students enrolled in the healthcare faculty at a local university in 2019, I jumped at the opportunity.

As part of the project, I was interviewed about my views on including patients and care partners in the education of healthcare providers.

The answer to the first question “Why should we involve patients in healthcare education?” is self evident in my opinion. The short answer is to enable providers to deliver better care. Listen to the two-minute answer in this video:

How would you have answered?

In a nutshell, I think it’s critical that patients and care partners participate in all aspects of healthcare in Canada – from education to delivery. Click on the questions below to get to the videos with the rest of my answers:

2) How should we involve patients in the education of healthcare providers?

3) What do you think healthcare providers think about including patients in healthcare education?

4) Have you been involved in the education of healthcare providers either formally or informally formally in the classroom or in the community and if so, how are you involved and what we’re your experiences?

5) What are the challenges and benefits of involving patients in healthcare education?

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

how should we involve patients in healthcare education?

what do healthcare providers think about including patients in healthcare education?

Care Partnering, Joy, Music, Videos

mom knew hundreds of songs, but down in the valley was her go to

I had never heard Mom sing Down in the Valley. Ever. Until a couple of years after she was diagnosed with Alzheimer disease. Then she (we) sang it every day, sometimes five or six times a day, until just before she died.

Mom and I must have sung Down in the Valley thousands of times between 2011, when I moved back to Canada to be her care partner, and 2016, when she said goodbye to this world. During that time I learned so much from our musical sessions together.

“Why don’t we sing a song Mom?” I would say when things were getting a bit out of hand, when either she or I was feeling stressed or angry or sad, or when I had run out of other things to do to keep us both occupied.

“Okay,” she would respond.

“What do want to sing Mom?” I always asked before I made any suggestions of my own. It gave her a modicum of control as her world was spinning out of it.

“How about Down in the Valley?” She would almost always reply — It was her go to.

“Okay Mom. You start.”

“Down in the valley, valley so low,” the words came out of her mouth sweet and true. “Hang your head over, hear the wind blow. Roses love sunshine, violets live dew, angels in heaven, know I love you.”

Mom had a beautiful voice. She knew all the words. I fell short on both counts, at least at the beginning. I learned the words eventually–to Down in the Valley and dozens of other tunes– but my voice would never match hers. Ever.

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

down in the valley: one of our gazillion favourites

5 things I never knew until I sang with my alzheimer mom

Care Partnering, Hope, Inspiration, Love

10 important facts i learned about people living with dementia from being my mother’s care partner

My mom (right) and her brother Eddy (left) during one of their last visits together (April 2013). They both lived and died with Alzheimer disease and dementia in their mid eighties.

My mom, who lived with Alzheimer disease, and I were care partners for more than a decade. My care partnering role changed and evolved during that time. When it began, I lived overseas. In 2011, when it became clear she could no longer live on her own, I returned to Canada to live with her in her own home. She was relocated to a nursing home, which I came to call a “dementia jail,” on November 16, 2012. For the next forty-five months I visited Mom for several hours virtually every day.

I didn’t see her on August 11, 2016; I didn’t have the strength that day. But I was by her side for the next six, and I held her hand when she died on August 17, 2016.

Being my mother’s care partner was the hardest thing I have ever done. It was also the most rewarding. I learned so much. I loved so much. I cried countless tears. I wouldn’t trade the journey for anything because I also experienced the deeply spiritual privilege of loving another person unconditionally.

Below are ten important facts I learned during and after the time I spent being my mother’s care partner (I’m still learning!)

People who are living with dementia, no matter what “stage” of the condition they are living with:

  1. are human beings with wants and needs just like the rest of us
  2. have feelings just like the rest of us
  3. have rights just like the rest of us
  4. deserve to be treated with dignity, just as we all should be
  5. are aware of the world around them, even when it seems they might not be
  6. are capable of loving others
  7. deserve to be loved and cared for
  8. can teach us lessons if we are open to learning
  9. are different than us, not less than us
  10. are not “empty shells”

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

take off the blindfolds and #BanBPSD: an open letter to the worldwide dementia community

13+ needs we share with people who live with dementia

Hope, Humour, Inspiration, Love

your name is a queen (elizabeth shares a lesson on labelling)

Let it go (it doesn’t matter if they know you or not) is one of MyAlzheimersstory.com’s most shared pieces. When I posted it on Facebook in January 2020, long-time follower Elizabeth Dunbar shared this delightful story:

My dad knew my essence until his last breath. Labeling and putting people in boxes and pigeon holes is a human convention. Other animals recognize each other without knowing relationships or each other’s history. They just accept.

So whether Dad knew my name or my relationship to him or not didn’t matter to me. I remember going away for a few days about a year before he died. When I returned, I bounced into his room as always. He looked quizzical. I realized he didn’t totally remember me, and I gave him permission to do that.

“I know you’re not feeling well enough these days to totally remember me,” I said. “Is it ok to give you a hint?”

He nodded his assent.

“Well I’m the daughter. One of two children you had. I’m the one that talks a lot!” I joked.

He threw his head back and laughed with tears in his eyes.

”Your name: it’s a Queen,” he said.

“Yes, that’s right,” I said. “I’m Elizabeth. Queen Elizabeth.”

We both laughed.

This was a simple conversation we had many times after that. Sometimes I think he was lucid and pulling one over on me, because that would be him. I always treated him like he was my dad, and let him know that any forgetting was simply okay.

I love this story. It’s so hopeful and helpful, and speaks to the power of playfulness and going with the flow. Thank you so much Queen Elizabeth Dunbar.

it doesn’t matter if they know you or not

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

how often do we fail to recognize them?

 

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.

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

#mc_embed_signup{background:#fff; clear:left; font:14px Helvetica,Arial,sans-serif; }
/* Add your own MailChimp form style overrides in your site stylesheet or in this style block.
We recommend moving this block and the preceding CSS link to the HEAD of your HTML file. */

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

Take my short survey on behaviour here.