Tag: compassion

Care Partnering, Inspiration, Love, Music

happy birdday mummy

My Alzheimer's Story

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?

My Alzheimer's Story

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?

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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?

My Alzheimer's Story

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?

My Alzheimer's Story

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?

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why patients and care partners should be involved in healthcare education

Advocacy, Care Partnering, Interviews, Videos

how should we involve patients in healthcare education?

My Alzheimer's Story

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?

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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

My Alzheimer's Story

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?

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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

My Alzheimer's Story

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.

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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 Alzheimer's Story

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”

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

13+ needs we share with people who live with dementia

Advocacy, Antipsychotic drugs, Music, Videos

she couldn’t sing because she was sedated

My Alzheimer's Story

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

My Alzheimer's Story

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

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Take my short survey on behaviour here.