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?

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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?

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?

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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?

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

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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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.

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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

Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
  1. Love
  2. Hope
  3. Resilience
  4. Courage
  5. Determination
  6. Ingenuity
  7. Creativity
  8. Music
  9. Connection
  10. Caring
  11. Compassion
  12. Relationships
  13. Interdependence
  14. Empathy
  15. Faith
  16. Curiosity
  17. Laughter
  18. Kindness
  19. Generosity
  20. Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Challenges & Solutions, Resources, Toward better care

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.

In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.

“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We are home!”

When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”

I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.

What I discovered through self-reflection, observation and my own research is the behaviour we find challenging in people who live with dementia is behaviour we would likely exhibit ourselves in similar circumstances.

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are
  1. When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
  2. How would you feel if you were kidnapped? What would you do?
  3. If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
  4. If were taken from your home by people you didn’t know, and put in a strange place full of crazy people, what would you do?
  5. Where do you want to go or be when you feel tired, overwrought, out of sorts, out of place, lonely, scared or overwhelmed by everything?
  6. How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
  7. How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
  8. If someone locked you in your house and told you that you could never leave, how would you feel?
  9. As a child, did you ever fall and hurt yourself while playing outside? Where did your instinct tell you to go for safety and security?
  10. Have you ever run away from a problem, a place or a situation? When? Why?
  11. Do you ever feel like you just have to leave when things get too much for you to bear?
  12. Do you sometimes just want everything to be other than the way it is?
  13. Do you take holidays and vacations away from home? How does it feel to be away? How does it feel to be away when everything seems to go wrong?
  14. How do you feel when you return home after a holiday, vacation or long visit with friends or family?
  15. In general, where do you prefer to be most of the time: in your own home or someone else’s home?
  16. In general where do you feel most comfortable and in control: in your own home or someone else’s?
  17. What feelings does the word “home” evoke for you?
  18. Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
  19. Do you sometimes long to be somewhere other than where you are?
  20. When do you most appreciate being “at home” wherever that is or whatever it means to you?

It’s no wonder people living with dementia want to go home…

13 expert tips to help with “I want to go home.”

“wandering” is not a symptom of dementia

 

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Death & Dying, Life & Living, Memories, Tips, tools & skills

what do you say to people living with dementia when someone they love dies, or when they ask about someone who is dead?

Online care partner groups are supportive environments where family members who care for people they love who live with dementia ask and get answers to all kinds of questions. Sometimes the questions, such as this type, are heartbreaking:

My mother has Alzheimer’s disease, and my father is terminally ill with cancer. His time is very short now — only a matter of days. I’m worried about what I should say to Mom about Dad’s death. How do we tell her about his passing? We figured we would take her to the funeral home for a private visitation, but not keep her there for the visitation or funeral. What do we do after he’s gone and she asks about him? Do we break the news to her over and over? Or keep changing the subject when he comes up?

Experienced family care partner and USAgainstAlzheimer’s FB group moderator Jessica Price-Parrott answers this kind of question with excellent advice:

“My mom and grandmother were each other’s everything. Once my grandfather died my mom was her helper, friend, caregiver, and protector. My mom lived just two blocks away and really met all of my grandmother’s needs. Fast-forward fifteen years to when my mother was diagnosed with Alzheimer’s. My grandmother watched the disease progress in my mom. My grandmother passed away first. At this time my mother was in a memory care facility. I did not take my mother to the viewing, and I did not tell her that her mother had died.

I think this is extremely situational. You really know your mother best. I chose to not tell my mom because her brain would not allow her to grieve like you or I.

I know some people who tell their loved ones with dementia and that’s that. The person who is living with dementia never asks another question about it. Others ask over and over again, and grieve every time they are told the person they love is gone.

At first I thought my mom needed to know, it was her mother, she deserved the truth, and it wasn’t fair to her for me to not be honest. The more I thought about it though, the more I felt that telling her wouldn’t be fair because her thought process wouldn’t allow her to grieve in a healthy way.

When Mom asked how her mom was I would say she was fine and well taken care of. I figured that wasn’t a lie. God was keeping her safe.

As Mom lay dying she opened her eyes and looked at me. It was then I told her that her mom was waiting for her. I smiled, and loved her. She closed her eyes, and passed away peacefully.”

My mother and grandmother were also very close. When Mom asked about her mom, or her sisters (all of whom were gone), I told her they were happy and peaceful.

Also like Jessica, I was at my mother’s side when she died. During her final hour, I repeatedly said the same thing to her: “Gran is waiting for you Mom. It’s okay to go. She’s waiting for you.”

I know Mom heard me, and I’m sure it comforted her as much as it did me.

dying with my mom

10 normal ways care partners express grief

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Care Partnering, Family, Inspiration, Videos

this is what tragic brilliance looks like

In 2011, UK pub owner Alex Lewis somehow contracted Strep A, an incredibly rare bacterial infection from which a person’s flesh starts to eat itself.  The infection attacks the limbs, then works its way inwards, through the joints, past the vital organs before finally – fatally – destroying the heart.

“I shouldn’t have survived it,” he says. “I think 10,000 people a year contract Strep in some form, and of those about 9,600 die. Then of the 400 left, only about 10 have quadruple amputations. I’m one of the lucky ones, definitely,” Lewis says in this 2016 Telegraph article.

I watched the documentary below, spellbound for an hour, as Lewis’s story unfolded starting with how the disease left him severely disfigured and disabled. Both he and his life partner Lucy demonstrate unbelievable courage, determination and loyalty throughout the several years covered in the video that focuses on hope and possibility.

While Lewis’s story isn’t about Alzheimer disease or another form of dementia, it is about love, care, caring, challenge, courage, compassion, determination, life, living, reframing and transformation, all of which are integral to the lives lived by people with dementia and their care partners.

I hope you find it as inspirational as I do.

Lewis’s closing words reminded me of what Mom told me in 2014, and what caregivers from around the world said they had learned when I asked (also inspirational):

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

https://myalzheimersstory.com/2016/05/14/top-15-things-dementia-care-partners-say-theyve-learned/

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