“I strongly believe I did the right thing by telling everybody,” says Charlene Allen, a caregiver living in New Westminster whose husband John is living with dementia and is currently waiting for a placement in long-term care. “It really drove home how loved John is.”
Charlene is one of many British Columbians joining forces with the Alzheimer Society of B.C. during Alzheimer’s Awareness Month to say “Don’t change. Even if they do.”
The campaign is aimed at inspiring people to reflect on the ways they will continue to show up for the people in their lives who are living with dementia or are caregiving. Delta residents are encouraged to participate.
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 60s 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.”
“Diagnosis can often result in people retreating and isolating themselves,” says Avalon Tournier, Support & Education Coordinator at the Alzheimer Society of B.C.’s South Fraser resource centre, which serves Delta residents. “But we know that it’s essential for people living with the disease to remain active and engaged to maintain their quality of life for as long as possible.”
Active within her community and her religion, Charlene knew she had to be open about their new and changing situation right from the beginning. “People had been wondering, kept calling and expressing their concerns because the changes were so obvious. I wanted everyone to know what to expect.”
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.
Finding ways to stay connected with her community has continued to be central to Charlene’s approach to coping with her role as a caregiver and supporting John. Not long after diagnosis, she reached out to the Alzheimer Society of B.C. for support and took part in education workshops and webinars. In the process, she found kindred spirits among other caregivers in the area, and they have been in regular contact with each other.
Charlene also started sharing her caregiving experience through journaling with the people around her as a way for her to cope, stay positive, encourage others on the dementia journey and be encouraged herself. “This whole situation is terrible, and I know the disease is fatal,” she says. “For the most part, I try to stay as positive as possible.”
During Alzheimer’s Awareness Month, the Alzheimer Society of B.C. is sharing the stories of people like Charlene and encouraging the public to visit www.dontchange.ca.
