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Category: Living with Dementia

How do you want to leave your financial legacy?

How do you want to leave your financial legacy?

Planning for the future is important for everyone, but it’s especially important if you or someone you care about has dementia. That’s why we’ve partnered with RBC Wealth Management Estate & Trust Services to bring you a series of informative blogs about estate planning.

In this blog, Leanne Kaufman, Head of RBC Estate & Trust Services, asks ‘What kind of financial legacy do you want to leave behind?’

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Celebrating Mother’s Day when Mom has dementia

Celebrating Mother’s Day when Mom has dementia

With Mother’s Day just around the corner, the crunch is on to find that perfect gift to show your mom just how much she means to you. But what if your mom has dementia? Here are a few simple, engaging ways to show your mom how much you care—on Mother’s Day or any other day of the year.

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Living well…right to the end

Living well…right to the end

May 7 – 13, 2017 is National Hospice Palliative Care Week. Mary Schulz, Director of Education at the Alzheimer Society of Canada discusses some of the misconceptions about palliative care and why it’s important to have conversations about end-of-life.

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You can be that one to make a difference

You can be that one to make a difference

Did you know that over 210,000 people in Ontario are living with dementia? That over 564,000 Canadians are affected by Alzheimer’s disease or dementia today? We all know, or know of, someone affected by this disease. They are our neighbours, our friends, our grandparents and our uncles. They are someone in our life, and they are more than just a number.

You can be that one to make a difference in the lives of those affected by dementia. By donating today, you can help fund research to find treatments, and even a cure, for this disease. You can help fund programs that support people with dementia and their caregivers, and help improve quality of life.

For people like Amir, your support means the world.

Here is his story:

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Driving with Dementia

Driving with Dementia

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

Driving had always been an important part of my mother’s life. She loved to tell stories about her adventures as a young woman chauffeuring friends from her home in Campbellford to Peterborough, Ontario to watch the Petes play hockey, or taking a carload of women to Buffalo, New York, to shop.

After she was married, my father’s poor eyesight meant that my mother was the main driver in the household and her ability to drive assumed an even greater significance.

My mother was devastated when her doctor notified the Department of Motor Vehicles that she had dementia.  After her driver’s license was suspended, she refused to attend social gatherings and resented that she needed me to take her grocery shopping or to the drugstore.  Ordinary tasks became an ordeal for both of us. She soon became obsessed with the notion that her doctor had acted in bad faith by reporting her illness and she was determined to have her license reinstated.

One day, she told me that she would be able to drive again if she passed a standard road test. I knew that information wasn’t accurate but I agreed to take her to a Driver Licensing office for the test.

When we arrived, I sat at the back of the room and waited while my mother approached the front counter.  A clerk typed information into a computer and then gently shook her head.  She explained that there was a detailed process my mother would have to follow if she wanted to get her driver’s license back.

“But the doctor was just acting out of spite,” my mother protested.

By the next day, my mother was furious with me. According to her, just as the clerk was about to return her driver’s license, I held up a sign declaring that she had dementia. The clerk saw the sign and immediately withdrew the license. I was stunned.

At the time, I didn’t understand that driving a vehicle meant more to my mother than a way to maintain her independence. The ability to drive was an integral part of her identity and losing her license was another way that dementia was affecting the life she had long known.

People with dementia should be allowed to drive for as long as possible but when their ability is impeded and they pose a risk to themselves or others their license must be suspended. Contact your local Alzheimer Society to learn how you can support your loved one through this significant life change and help them stay connected with their community.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.

The mirror of dementia

The mirror of dementia

I look in the mirror and what do I see?

I see me. That is me…the same ‘me’ I’ve always seen when I look in the mirror.

But wait – is it really the same ‘me’? Is this what others see? I look like me – or the ‘me’ I was.

You see, I have changed – not on the outside, not in who I am, not in what I believe; I haven’t changed in how I see the world.

You see, I’ve changed in how my mind works.

The words…the words I use, they don’t come easy; they become confused. That word I want to use – you know that word – it won’t come to me now.

Oh yes, there I am, there in the mirror. What did I come in here for? I don’t know. Well, I’m in the bathroom looking in the mirror…I must be in here for something.

Oh look, here is a hairbrush. That must be it – I must have come in to brush my hair.

But when I look in the mirror, my hair is already brushed. No, no, that is not what I’m in here for.

This disease is making me confused at times. But I’m still me when I look in the mirror.

No, wait – those aren’t my eyes. Those eyes I see looking back at me are tired; my eyes aren’t tired.

My eyes twinkle and are full of life. I am full of life.

Look, look in the mirror – that is me. The ‘me’ others see.

Look at my smile – there it is – yes, I am happy. I have a loving husband and a supportive family. Yes, I am happy.

But, wait…that smile is drooping…my smile doesn’t droop.

Is this a sign of that disease in my head…the one that is attacking my brain? The brain that does not always work the way I want it to…

Can others see theses signs, too?

Look in the mirror – this is me.

How long will I still be me? How long will I still see me?

How soon before I look in this mirror and the ‘me’ won’t be there?


© 2016 Phyllis Fehr

Phyllis is a person living with early-onset Alzheimer’s disease and Lewy body dementia. She is a strong advocate for the rights and abilities of people with dementia at the local, national and international level. Read her full bio here: http://www.odag.ca/our-people.html

DementiaHack 2017: Making a difference with technology

DementiaHack 2017: Making a difference with technology

On March 4th, the doors opened bright and early at MaRs Discovery District for DementiaHack 2017. Throughout the morning, registrants trickled in, setting up their computers and discussing their plans for the upcoming 36 hour-long event. An annual event hosted by Hackernest, Dementia Hack is a competition to create innovative technology to help people with dementia, Alzheimer’s disease and other neuro-degenerative diseases. With over 300 developers gathered together to compete, the room was buzzing with eager participants, discussing and preparing their projects.

Opening remarks were led by Jordan Banks (Facebook Canada) followed by Mayor John Tory, Gerry Gallagher (Public Health Agency of Canada) and Kevin McGurgin (Dementia Hack). Each speaker noted how inspiring it was to see so many young and bright individuals working together to help people with dementia and their caregivers. The winners of the competition would receive a cash prize of $100,000 to develop their technology, but it wouldn’t just be them who won. Today, 564,000 Canadians are living with dementia, and even more people worldwide. With the help of the hard work of the developers at this event, many more resources and tools would be developed that could make a huge impact on the lives of people with dementia.

Pictured Above: Mayor John Tory speaking at opening remarks

At 10:30 am, the competition began, and each team started working on their projects. Around the room, were mentors from various backgrounds of expertise in the fields of dementia, health services and research. Team members approached mentors throughout the day to ask for their expert opinions on the design of their projects. Amongst the group of mentors, were Phyllis Fehr and Agnes Houston, who brought vital perspectives to each group. Phyllis and Agnes are both diagnosed with dementia and are prominent advocates for people with dementia and their caregivers.

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Pictured above: Agnes Houston (far left), and Phyllis Fehr (second left), advising a team at the event
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Pictured above: Developers at work on their application for the competition

The next day, the judges evaluated each project to determine who would take home the grand prize for the competition. One of the judges, Lisa Salapatek (Chief Program and Public Policy Officer at the Alzheimer Society of Ontario), spoke about the event and projects submitted:

“I had the honour of being a mentor and judge for the Family Caregiver Challenge set.  It turned out to be the most popular category with 20 teams competing, and their solutions and presentations were nothing short of amazing, ranging from in-home artificial intelligence and sensor systems to reduce safety concerns, to virtual scrapbooks and storytelling tools, to uber-inspired apps to help families access the support they need on demand.   There were long debates as the judges for each challenge set came together to come to come to a consensus on which teams would move on to the finals.”

After the judges had all met, the grand-prize winner of the competition was announced: Team Momentum, for their application, MemoApp. The application works by passively collecting and analyzing data about the person with dementia through natural voice recording, to help them and their caregiver better track the progression of their dementia, and to gather data for researchers to better understand the progression of dementia. The runner-ups in the competition were the applications: Bright Guide, Rescue and ConnectDem.

We look forward to seeing how these incredible applications will develop and what new and innovative ideas will be brought to next year’s Dementia Hack!

Missing the Signs

Missing the Signs

Follow us, as Elizabeth Murray tells the moving story of her mother’s battle with dementia. In this blog series, Murray explores every part of the experience of caring for someone with dementia, sharing her memories and insights from it all. Her words serve as a great reminder of the many ways dementia affects our lives, and the lives of our loved ones.”

25,000 Canadians are diagnosed with dementia each year yet families often dismiss its symptoms as part of the natural process of aging.

My mother began showing signs of dementia six years before she was diagnosed but the disease crept up on her, hiding behind normal behaviour.  She had always been a little suspicious, slow to acknowledge her flaws. And gradually those traits became more pronounced.

“Why do you want to know?” she would reply to questions about where she had been or what she had been doing.

“Everybody forgets things sometimes,” was her usual response to an unusual memory lapse.

In those years, I was battling cancer.  I didn’t want to contemplate the possibility that my mother might be facing her own difficult battle.

After her diagnosis, I felt overwhelmingly guilty for not recognizing her disease sooner.  I remembered the times I had been impatient with my mother’s strange ideas; the hurt in her eyes when I was frustrated with her forgetfulness. I berated myself for my lack of empathy.

When my mother forgot to attend Grandparents Day at my son’s school – an annual event they both cherished – I had been furious. All I could think about were the tears that were surely rolling down my son’s cheeks when she failed to arrive.  I didn’t consider how she must have felt when I pointed out her mistake.

Preoccupation with my own health was my excuse for not confronting my mother’s disease but everyone has something in their life that makes it easy to miss the signs that a loved one might have dementia.

I’ve learned to forgive myself for my sometimes-willful blindness to my mother’s symptoms but perhaps if I had been better informed about dementia some of the heartache my mother and I endured could have been avoided.

Alzheimer Societies provide valuable support to families in need but sharing our experiences with the disease can also help to raise awareness – and may make someone else’s journey a little easier. For information and resources on Alzheimer’s disease and dementia, you can visit the Alzheimer Society of Ontario’s website.

Written by:

Writer Elizabeth Murray
Elizabeth Murray
Retired lawyer and the author of Holding on to Mamie:  My Mother, Dementia and Me.
For more information about Elizabeth and her story visit www.holdingontomamie.ca.