On Awareness, Forget-Me-Nots, and a Book Born from Stories That Changed Everything
January is Alzheimer’s Awareness Month in Canada — a time dedicated to shining a light on dementia, the people living with it, and the millions of family members and caregivers who walk beside them every day. Across the country, the Alzheimer Society of Canada and its provincial partners organize events, share resources, and invite Canadians to learn more about what dementia really means — not just medically, but humanly.
But now January is over. The awareness campaigns quiet down. The social media posts slow. The headlines move on.
And yet — for those of us living the dementia caregiving journey — nothing changes. There is no “after” awareness month. There is only the next morning. The next medication. The next moment of confusion, or frustration, or unexpected tenderness. For caregivers, every month is awareness month. Every day is a lesson in patience, grief, love, and resilience.
This post is for everyone who knows that truth. And it is for everyone who wants to understand it better.
The Forget-Me-Not: A Flower That Carries Our Story
If you have ever seen the Alzheimer Society of Canada’s logo or attended one of their events, you have likely noticed a small, delicate blue flower — the forget-me-not. It is a modest bloom, easy to overlook in a garden full of roses and lilies. But its meaning is anything but small.
The Alzheimer Society chose the forget-me-not as its official symbol for a reason that sits right at the intersection of beauty and heartbreak: it represents memory loss, one of the most recognizable symptoms of Alzheimer’s disease and other forms of dementia. But the flower carries a second, equally important message — it is a call to remember. To remember the people living with dementia. To remember their caregivers. To remember that behind every diagnosis is a complete human being with a lifetime of experiences, relationships, and love that does not disappear just because memory does.
The Legend Behind the Flower
The forget-me-not’s association with remembrance stretches back centuries. One of the most enduring legends comes from medieval Europe. A knight and his beloved were walking along the banks of a river, admiring the wildflowers that grew along the water’s edge. The knight bent down to pick a bouquet of small blue flowers for his lady. But as he reached for them, he lost his footing and was swept into the current.
As the river carried him away, he threw the bouquet to his beloved and cried out: “Forget me not!”
That moment — a plea to be remembered, to not be lost, to remain held in someone’s heart even when physical presence is no longer possible — became the flower’s name and its legacy.
For those of us caring for someone with dementia, this legend resonates in ways that are almost too close to bear. We watch our loved ones being carried away — not by a river, but by a disease that slowly erodes the memories, the recognition, the shared language of a lifetime together. And in their eyes, in their moments of clarity, in the way they still reach for our hand even when they cannot remember our name — we hear that same cry: Forget me not.
What the Flower Means for Caregivers
The forget-me-not is not just a symbol for awareness campaigns and charity pins. For caregivers, it is a daily truth:
Even as memories fade, love does not. Dementia takes so much — names, dates, the ability to recall yesterday or recognize tomorrow. But the emotional bonds, the felt sense of safety and love, the comfort of a familiar voice — these persist far longer than factual memory. Research consistently shows that people living with dementia retain emotional memory even when cognitive memory has declined significantly. Your loved one may not remember what you said, but they remember how you made them feel.
Even as the person changes, their essence remains. One of the hardest aspects of dementia caregiving is the grief of watching someone you love become different from the person you knew. But the forget-me-not reminds us to look deeper — past the confusion, past the repetition, past the frustration — to the person who is still there. Still worthy of dignity, still deserving of compassion, still whole in ways that matter.
The caregiver, too, deserves to be remembered. The Alzheimer Society is clear that the forget-me-not represents not only those living with dementia but also their caregivers. This matters. Caregivers are so often invisible — carrying enormous physical, emotional, and financial burdens while the world looks past them. The forget-me-not says: we see you too. You matter too. Do not forget yourself in the process of caring for someone else.
When Facebook Became My Classroom
I want to share something personal — something that changed the way I understand dementia, caregiving, and the power of community.
I am a social work professor. I have spent over 20 years in academia, teaching courses, designing curricula, reading research. I thought I understood dementia from a professional perspective.
Then my Mama was diagnosed. And I became a primary caregiver. And everything I thought I knew was not enough.
In those early days — overwhelmed, exhausted, and often frightened — I turned to online support groups on Facebook. I was not looking for clinical information. I was looking for someone who could say: “I know. I have been there. You are not alone.”
What I found in those communities was extraordinary. Thousands of caregivers — spouses, children, siblings, friends — sharing their most raw and honest experiences. Stories posted at midnight after a wandering episode. Stories about the guilt of losing patience. Stories about the impossible decisions around care facilities. Stories about feeding struggles, medication battles, and the heartbreak of not being recognized by the person who raised you.
But also — stories of grace. A mother who could not remember her daughter’s name but still hummed her favourite lullaby. A husband who could not feed himself but still reached for his wife’s hand. A grandmother who could not follow a conversation but laughed — really laughed — at the family dog.
These stories were not in any textbook. They were not in any journal article. They were the lived curriculum of dementia caregiving — raw, unfiltered, and more powerful than anything I had ever read in my academic career.
I realized something profound: online communities are not just support groups. They are living archives of human experience. Every post, every comment, every reply that says “me too” — these are acts of collective wisdom. They transform our understanding of dementia from a clinical diagnosis into a deeply human story. They teach empathy in a way that no lecture ever could.
I began to gather these stories — not to own them, but to witness them. To honour them. To share them with a wider audience so that the wisdom inside those Facebook groups could reach people who might never join one.
A Book Born from the Journey
That gathering became a book.
“Understanding Dementia: Stories of Love, Challenge, and Hope — A 12-Week Journey for Caregivers and Communities” (First Canadian Edition) is the result of years of witnessing, learning, and living the dementia caregiving experience.
The book is organized as a 12-week journey through 12 chapters, each focusing on a different dimension of the dementia experience:
Week 1 — The Emotional Weight of Caregiving: Carrying the unseen. Honouring the hidden emotions — the guilt, the exhaustion, the grief that arrives long before loss.
Week 2 — Advocacy and Medical System Challenges: Standing up to systems, bureaucracy, and barriers when you are already running on empty.
Week 3 — When Safety Becomes the Priority: Wandering, nighttime confusion, and the hard decisions that keep you up at night.
Week 4 — Choosing Care Facilities with Love: Navigating placement decisions with compassion — including the guilt, the wait lists, and the hope.
Week 5 — Managing Daily Routines and Resistance: Finding flow in everyday challenges — bathing, eating, sleeping, and the battles that come with each.
Week 6 — Understanding the Dementia Diagnosis Process: From first signs to understanding what a diagnosis really means for your family.
Week 7 — When Love Feels Like Blame: Navigating accusations, anger, and the painful misunderstandings that dementia can bring into relationships.
Week 8 — Navigating Public Spaces with Confidence: Managing outings, judgment from strangers, and protecting your loved one’s dignity in the world.
Week 9 — Finding Moments of Grace and Connection: The unexpected joy that arrives in the middle of the hardest journey of your life.
Week 10 — Holidays, Rituals, and Shifting Traditions: Honouring memory while creating new meaning when the old traditions no longer fit.
Week 11 — Understanding Hospice and End-of-Life Choices: Comfort, dignity, and the most difficult decisions a family will ever face.
Week 12 — Letting Go and Beginning Again: Grief, healing, and learning to live after caregiving ends.
Each chapter includes composite caregiver stories drawn from online communities, real community wisdom shared in response, my own commentary drawn from both professional expertise and personal experience, key lessons to carry forward, and journaling prompts for personal reflection.
Why This Book Is Different
This is not a medical guide. It is not a textbook. It is a book that puts human stories at the centre of understanding dementia — because I believe that stories do what statistics cannot. They open our hearts. They create empathy. They make the invisible visible.
I also wrote this book as a First Canadian Edition, with a dedicated section helping Canadian readers navigate terminology differences and find provincial and territorial resources. Because caregiving does not happen in a vacuum — it happens inside systems, and those systems matter.
And I want to be honest about something: I wrote this book while living it. Not from a place of completion, but from a place of learning. I am designing this course as I am navigating — as a caregiver, as a professor, as a son. It is personal. It is sometimes hard. But it is important. Because stories that helped me months ago may help someone else today. Wisdom can be read at different times and different meaning can be found.
I Need a Few Thoughtful Reviewers
The book is nearly ready for publication, and before it goes to print, I am looking for a small number of reviewers from my former students who would be willing to read the manuscript and offer honest, constructive feedback. I want to have students as they know how I teach and I tried to model in the book the way I teach the course.
Who I am looking for:
You do not need to be an academic or a dementia expert. You might be a caregiver — current or former. You might be a social worker, nurse, personal support worker, or healthcare professional. Ideally you are my former student who took a class from me. You might be a student studying in a helping profession. You might be a family member who has walked this road. Or you might simply be someone who cares about this topic and wants to help make this resource as strong as it can be.
What I am looking for:
Your honest perspective. Does the book resonate? Do the stories ring true? Is the Canadian context helpful? Are there gaps you noticed? Does it honour the experiences it carries? Would you recommend it to someone beginning this journey?
If you are interested, please reach out to me directly — by message, by email, or in the comments. I would be deeply grateful for your time, your insight, and your heart.
Carrying the Forget-Me-Not Forward
January may be Alzheimer’s Awareness Month, but awareness without action is just a calendar event. The real work — the daily work — happens in kitchens and hospitals and care homes and Facebook groups at 3 AM. It happens in the small, sacred moments between a caregiver and the person they love. It happens when someone shares a story and someone else says: “Thank you. I needed to hear that. I thought I was the only one.”
So let us carry the forget-me-not forward — not as a pin on our lapel, but as a commitment in our hearts. Let us keep talking about dementia. Let us keep sharing our stories. Let us keep fighting stigma and building understanding. Because when we share stories, we transform how the world sees this disease. And understanding is the first step toward compassion.
To every caregiver reading this: your presence — imperfect, exhausted, and beautiful — is the greatest gift you can give. You are not alone. Your stories matter.
May these stories illuminate the path for others walking this sacred, difficult road.
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