Eric & Kelley Jo: A Journey of Hope

Connecting with the Alzheimer Society gave Eric and Kelley Jo what they needed most: information, support, and a sense of not being in it alone. Help ensure no one in our province has to face dementia alone.

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Imagine preparing to live with one kind of dementia, only to be diagnosed with another—one you weren’t expecting.

My name is Eric Eggertson, and I have dementia. I’m a recently retired communications consultant for the provincial Ministry of Health, and alongside my wife and best friend, Kelley Jo Burke, a playwright, educator and CBC radio host and producer, we’re navigating life with young onset Alzheimer’s disease together.

Kelley Jo and I have three children, most of whom are neurodivergent. Between us we have multiple university degrees and have been involved directly in dementia research for more than two decades. Together, we’ve spent most of our adult lives engaged in research around cognitive function.

You would think we would be well prepared for the journey that we are now on. You would be wrong.

My father lived with a form of frontotemporal dementia, which drained him of his vitality and intellect. As a family, we participated in a study on that form of dementia, knowing it could be passed down to the next generation. After years of participating in this research, I learned I had not inherited it. This news should have been a relief – but it wasn’t. I was still experiencing symptoms that I couldn’t explain.

I was never the most organized person. But five years ago, I started forgetting things I had just learned and misplacing everyday objects.

It was like reaching for a jacket that you always hang up on a certain hook, and—it’s not there. Same thing goes for your shoes, notebook, backpack—vanished. It was incredibly frustrating.

We had been preparing for life with dementia our entire married lives - but we had been preparing for the wrong kind.  The kind of dementia my father had was intense, terribly fast, and easily discernible. What I was experiencing was different.

We felt the ground slip under us and began the terribly slow process of getting an actual diagnosis. It turned out I did have dementia, just not the kind everyone was originally looking for. In 2022, I was diagnosed with possible early onset Alzheimer’s, which is also known as young onset dementia, and the diagnosis was confirmed last year.

We had no experience and no understanding of what we were headed into. Thankfully, engaging with the Alzheimer Society provided us with the guidance and support we needed.

We are learning a whole new way of living together and don’t necessarily know how. By reaching out to the Alzheimer Society, we have access to resources, which we used to push for better assessment and treatment.  We also have a better sense of how to recognize when I need accommodation or need to completely hand off some aspects of our life. The Alzheimer Society support group I’m part of has been helpful too, providing a space to share and connect with others who understand.

With more information from the Alzheimer Society, we were better able to problem-solve and seek resources. We are the lucky ones.

Many others - those who are in more isolated circumstances, and have no experience of, or research into how to go through this process – are far less lucky. They absolutely need the support, information, and outreach that the Alzheimer Society provides.

Thanks to the Alzheimer Society, we have found hope and support in a community that understands our struggles. We both feel that having received support as we go through this, we must give back when possible and we know sharing our story will help. 

There is no one that this disease will not touch. 

Over 20,000 people in our province are currently living with dementia. That number is expected to double in the next ten years. Whether through a family connection or simply by living in a society where there is an obligation to care for and hopefully prevent harm to citizens, dementia touches everyone.

The cost of care to society for someone with dementia can be enormous. Research, support for caregivers and public awareness can make a difference.

That’s why we are asking for your help.

Your donation will fund programs and services that provide critical education and support for people living with dementia and their families.