There are some moments that can instantly change the course of our lives.
For Kathleen, this happened on an ordinary bus ride on her way home.
“All of a sudden, I didn’t know where I was. I got off the bus, thinking I would recognize something, anything, but I didn’t. There was only confusion. I started to cry.”
The feeling of panic set in, so Kathleen called her husband Rob, now her primary care partner.
“He talked to me. He said, ‘do you recognize the McDonald’s near our house? do you know how to get home?’ I saw it, but I didn’t know how to get home. That’s when I realized there was a problem.”
Can you imagine those three haunting words: “You. Have. Dementia.” Kathleen was diagnosed with early-onset and vascular dementia at only 54 years old.
We had a chance to sit down with Kathleen to learn a little bit more about what it’s like living with early-onset and vascular dementia.
She told us that exploring the world and traveling with her husband Rob was one of the great things in life that brought her joy and happiness.
We talked bucket list travel destinations, and her favorite places she’s traveled. Kathleen was excited to share stories from her most recent trip to Scotland: “I took in the amazing views, the nature, and looked at all the old buildings and ruins. My favorite part was the Battle of Culloden. We were also recently traveling in Ireland and wow, it was amazing.”
That’s wonderful, we said, “You are quite the traveler!”
“Yeah, I am,” she replied, “at least… I was”.
Living with early-onset dementia has made travelling, one of Kathleen’s favorite shared activities with her husband, extremely challenging.
“I used to love to travel, but I’ve realized I can’t do it anymore. It really annoys me but now it is just too hard. That part of my life is over.”
A dementia diagnosis will change the course of your life. It is not only scary - it can also be extremely isolating. The weight of a new diagnosis is suffocating, especially without a social support system in place.
“For about the first two weeks,” Kathleen said, “I didn’t want to get out of bed. I just wanted to give up and die.”
But with the help of social recreation programs at the Alzheimer Society, things gradually got better.
Her regular programs have allowed her the chance to get active in the comfort of her own home, meet new people in-person, get talking with others and laughing.
“The people I have met at these programs have become like a family,” Kathleen says, “they’re wonderful people … I felt so alone, but now I can laugh, exercise, and engage with others who truly matter… It’s a fantastic thing”.
Kathleen’s optimism is reminder that even in the face of adversity, even after a dementia diagnosis, life continues to hold moments of joy.
“Just continue,” she says, “carry on. Dementia does not mean your life is over. To the opposite, it’s very much alive.”
We asked Kathleen “if you could have any superpower, what would it be?”
“I would say take away everyone’s health problems in the world, including Alzheimer’s disease and dementia”.
You can help us get one step closer to making Kathleen’s dream a reality, and ensure that no one faces dementia alone.
This World Alzheimer’s Month, you have the power to transform the lives of people just like Kathleen. When you become a monthly donor, your gift will be MATCHED for the next year, thanks to the Catherine Booth & Michael Kirk Social Recreation Fund.