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

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”

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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

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’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?


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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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Advocacy, Resources, Toward better care

what if everything we’ve been taught about dementia care is a lie?

That’s what Dr. David Sheard asked himself in 1995, along with “What if people with dementia don’t have any behaviours?” and “What if we’re actually killing them?”

Based on the answers to those questions, he founded Dementia Care Matters and developed the Butterfly Household Model of Care, a framework that transforms the care home cultures and environments into ones in which people living with dementia can thrive instead of just die.

This Toronto Star video shows what that transformation looks like, and fills me with hope for the future:

More on the in-depth story entitled “The Fix,” by the Toronto Star’s Moira Walsh here.

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Resources, Tips, tools & skills, Toward better care

hot pink duct tape solves alzheimer seating issue

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom.

I found this one to be particularly creative and practical; here’s a slightly edited version of what Catherine wrote in the support group update:

“I like to pass along tips I have figured out along the way; I hope others will find them helpful/useful.

I was having problems getting my mother to sit in her wheelchair. She just wouldn’t do it. Every time I would try to get her to sit, she’d have a panic attack and start screaming “no, I can’t!” while she grabbed my arms with an iron grip that caused them to be sore to the touch by the end of the day.

One evening I was sitting in the living room, looking at the wheelchair and wondering why she wouldn’t sit in it. Suddenly it occurred to me that her anxiety might be caused by the fact that the whole chair was black. “Maybe she can’t figure out where the seat is because the colour,” I thought to myself. Then I had an “Aha!” moment.

I found my daughter’s hot pink duct tape, tore off a three-inch strip, and stuck it dead center on the wheelchair seat. I thought if I used more, it would be too slippery, and as I wipe the cushion frequently, I also thought germs might adhere between the strips and the seat. Plus, a small square would be easier to remove/ replace.

I also found an old table leg and put some pink tape on the end of it. Now when I ask Mom to sit, I use the table leg as pointer. I tap the stick on the square of pink tape, and say, “Sit here, Mom.” Presto! She sits down pretty as you please. No more anxiety, no more struggle, no more sore arms!”

What a brilliant idea. Much better than saying a person is “resisting care,” or labeling her “combative” and then drugging her into compliance!

Thanks for being such a great dementia detective Catherine, for coming up with creative solutions like this one and for averting arguments by making your mom laugh. You are a care star!

turn potential dementia disasters into fun and laughter

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

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Joy, Life & Living, Memories

7 strategies to create harmony in dementialand

Dr. Elaine Eshbaugh writes a warm-hearted, funny and insightful blog Welcome to Dementialand, which I’ve quoted before.

The common sense advice above is taken from her post “Time Management in Dementialand;” it caused me to reflect on strategies and tools we may use as care partners to engage our care partners who live with dementia, stay connected and reduce our own stress.

1 ) Take a walk

There’s no downside and multiple upsides to exercise, particularly walking. It’s a great stress reliever for anyone, living with dementia or not; it helps maintain health, gets you out of the home and into a different space. More activities here.

2 ) Go with the flow

Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.

3 ) Don’t argue or correct

I spent years arguing with my mother and exacerbating no-win situations before I became aware that debate only created more anger and angst. By arguing, I became the cause of her “bad behaviour.” It wasn’t the disease, it was me; it wasn’t her fault, it was mine. More on that here.

4 ) Listen fully

Listen with more than your ears. Use your eyes, your heart and your mind. Learn to look behind behaviour to discover what a person with dementia is trying to communicate by their actions. Listen to their behaviour–it may say a lot more than their words ever will. More on this here.

5 ) Be quiet

I spent countless hours with my mother holding hands, watching birds at a feeder, looking out at a field, simply being together in silence. Quiet times can be as engaging as activity, and silence provides space for possibility if you let it. Remember the “pregnant pause?” More on this here.

6) Put yourself in their shoes

There’s nothing like seeing things from the other person’s perspective to increase understanding and connection. There are tools to help with that here and here.

7) If something doesn’t work, try something else

It’s useful to have multiple strategies and tools at the ready to manage different sets of circumstances and events, any one of which might work or not at any given time. For example, music might help someone to feel calm today, but baking cookies might do the trick tomorrow. Music might be effective again the day after tomorrow and the following day, but not the day following that. Flexibility and creativity are important.

Read Dr. Eshbaugh’s post Time Management in Dementialand here.

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Resources, Tips, tools & skills, Toward better care

5 ways to make toast in long-term dementia care

UK dementia care pioneer David Sheard suggests the ways people with dementia are treated in long-term care facilities may be categorized into five types. He bases his theory on a study comprising 500 audits conducted by his consultancy Dementia Care Matters in the UK.

Sheard’s five types are:

  1. Positive social (10%)
  2. Positive (5%)
  3. Neutral (70%)
  4. Negative protective (10%)
  5. Negative restrictive abusive (5%)

He demonstrates in this telling five-minute video using the example of making toast:

Unfortunately, I witnessed lots of negative restrictive abusive “care” in Mom’s Dementia Jail. To be fair, there were some care workers who delivered what Sheard describes as positive social care, but they were by far in the minority, particularly among the nurses I’m sorry to say.

What have you seen most often in practice? Even better, what have you practiced or do you practice yourself?

painful care partner choices: love or loss (or sometimes both)?

25 dementia communication quick tips in 4 minutes!

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Image copyright: belchonock / 123RF Stock Photo

Resources, Tips, tools & skills, Toward better care

two quick dementia care conversation tips from dr. al power

I highly recommend Dr. Allen Power’s two books Dementia Beyond Drugs, and Dementia Beyond Disease for care partners and care workers who want to deepen their understanding of how to best engage and support people living with dementia.

The books aren’t cheap. BUT, they are excellent value: full of real-life stories, tips, perspectives, new ways of thinking,  and good, solid, practical care giving advice. I reference them all the time.

I was delighted to chat briefly with Al via Zoom about two ways to foster rich and enjoyable conversations with people living with dementia at any stage. Essentially, they boil down to:

  1.  reframe questions as statements
  2.  offer choices in a variety of ways depending on the person

Watch the video for more:

More from Dr. Power and Dementia Beyond Disease here:

10 pieces of wisdom from dr. allen power & dementia beyond disease

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Hope, Inspiration, Quotes

how often do we fail to recognize them?

Coauthor of A Pocket Guide for the Alzheimer’s Caregiver and one of Maria Shriver’s Architects of Change, neurologist Daniel C. Potts champions life-affirming care for those living with Alzheimer’s disease/Dementia and their care partners. His blog is here.

When I saw the above quote of his on Twitter (@DanielCPotts), I just had to create a meme with it. What a wonderful, mindset-changing sentiment which EXACTLY captures the importance of looking beyond and behind the condition to see the person that remains until the end.

The quote also joyfully reminded me of these moments with Mom as well as other reflections on recognizing and being recognized:

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