WAM - Jane and Eileen

September is World Alzheimer’s Month. Throughout the month, we are going to say hello to some of the people who have shared their stories with us over the years. For some of these people, their caregiving journey has come to an end, while others may be a further along on their journey from when we last spoke. But wherever they are, these caregivers are continuing to share their stories to raise awareness about Alzheimer’s disease and other dementias, to honour their person who lived or is living with the disease and offer support and guidance to those on their own journey.

Follow along here and on social media.

Jane and Eileen

For Jane, the biggest challenge after her mom passed away was figuring out what to do with herself.

The Newmarket resident said she didn’t realize how much time she spent caring for her mom until she no longer had to do it.

“I rarely just sat down to read, watch TV or clean the house because she (her mom) was always there. I couldn't leave a room without her searching for me and becoming restless… It wasn't until it stopped (caregiving) that I realized how much I was doing. I never realized how tired I was.

"I always felt like I was in a brain fog. I did my day-to-day routines, always feeling like I was forgetting something or losing track of what I was doing either at home or work.”

Jane said those early days after her mom passed were sad and there was a huge void in her life. Her mom was like her shadow: where she was, her mom was always close by.

Eileen was always a kind and caring person, Jane said. Eileen attended the Aurora DAY program and Jane said she was always friendly and cooperative, getting along with everyone there – staff and fellow clients.

“She remained this way her entire life. Alzheimer's did not take that away.”

What the disease did take away were her memories, her cognition and her ability to do day-to-day tasks.

“I want people to know that everyone's journey with Alzheimer's or dementia will be different. You need to live with it in the moment. Yes, you need to make plans for the future as the caring becomes more difficult, but enjoy who they are at every stage no matter how hard it gets.”

Looking back on her caregiver journey, Jane said she wishes she reached out to the Alzheimer Society of York Region (AS York) for support earlier.

“I thought I could do it and there were many days I did; but there were many stressful days and days of tears. Caregivers need to look after themselves. You are so caught up in caring for your loved one that you don't realize you are tired, scared, and frustrated.”

Jane suggested caregivers join an AS York support group and surround themselves with people who understand what they are going through, to receive reminders they need a break and, most importantly, show them they are not alone.

“I felt connected and understood after each meeting. I trusted the moderator (social worker). It was a safe place to air out my concerns and frustrations. There were no judgements whatsoever. I should have started going sooner because the biggest discovery is knowing you are not alone. Many people will tell you that they ‘know’ someone with Alzheimer's; however, until you lived with the person and watched them progress with the disease, you feel alone. I needed recognition that I was doing the best I could and the support group gave me that.”

While Jane was grateful for the COVID-19 pandemic as it allowed her to stay at home with her mom for two years, she was happy when the DAY program re-opened as it allowed her mom to get the socialization she needed, even if it was from a distance.

“They (DAY program support workers) had the patience that I lacked sometimes and she was comfortable and welcomed there. I miss the daily interactions with the staff at the AS York DAY program. They were very good listeners and they understood how hard it was to care for someone with dementia. I knew my mom was safe with them.”

Jane said she still misses her mom and she continues to feel the void her mom’s passing has left in her life.

“I want to honour (my mom’s) memory by continuing to share my experiences with Alzheimer's. The AS York DAY program was my lifeline and I want to give back to them in some way.”