Don't change: Charlene Allen's story

Throughout January, the Alzheimer Society of B.C. is recognizing Alzheimer’s Awareness Month by highlighting the experiences of British Columbians affected by dementia to say, “Don’t change. Even if they do.” For many people living with dementia and their caregivers, the dementia journey can feel very isolating. Sustaining relationships is essential for the well-being of people facing the disease, whether they live in the community or in long-term care.

This year, British Columbians are sharing their experiences and thoughts on the value of staying connected to people in their lives who are affected by the disease, whether they’re living with dementia or caring for someone who is. Among them is Charlene Allen, a caregiver from New Westminster, B.C.

Charlene first noticed changes in her husband, John, when he became confused about items like house keys and started misplacing things. Their doctor assured them that many people in their sixties forget things. But when the incidents continued and John began to struggle with navigation, something he had always been very good at, Charlene became even more concerned. This led to testing and then eventually to a diagnosis of young onset Alzheimer’s disease.

The two of them reacted to the diagnosis in very different ways. While John struggled to accept his new reality, Charlene felt a mixture of fear and relief. “It meant I wasn’t making this up,” she says. “It confirmed what I’d been thinking.”

For many people, the diagnosis can result in people retreating and isolating themselves. Not in Charlene’s case. “I told everybody,” she says. “People had been wondering, kept calling and expressing their concerns because the changes were so obvious. I wanted everyone to know what to expect.”

Not long after diagnosis, Charlene contacted the Alzheimer Society of B.C. to learn more about the disease. She took part in education workshops and webinars. In the process, she connected with other caregivers in the area and they started to develop a network to support each other.

Charlene has found ways to keep John engaged and connected. “We’ve always enjoyed the outdoors,” she says. “We've spent a lot of time on our patio just watching the hummingbirds and we often go on picnics in the summer. We even enjoy winter picnics, weather permitting.” She continued to adapt to his changing situation. “John always enjoyed music and I would help him with his headphones so he could listen, as reading was becoming very difficult.”

The loss of in-person support due to COVID-19 restrictions was difficult for John and Charlene. When the couple needed to stay home, John would often walk away from video calls. Day programs were also on hiatus. Now that restrictions have been lifted, they have periodic support from home care workers and a small group of friends John interacts with. They are continuing to adapt to the constantly changing reality of the disease, though, and John is now waiting to transition into long-term care.

For Charlene, being open and upfront with people about their experiences of the disease has been central to the journey for her and John. “I strongly believe I did the right thing by telling everybody,” Charlene says. “It really drove home how loved John is.”

Learn more about the campaign

Want to learn more? Read some of the other stories being shared throughout the month and visit dontchange.ca to learn more.