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Kootenay family’s journey with dementia an eye-opener
During Alzheimer Awareness Month, family shares challenges of navigating the system and finding appropriate care in hopes of inspiring support
“Mom copes by living each day as if she is still independent – that’s how she maintains her cheerful, positive outlook,” said Lori Smith, a retired nurse who worked in Trail. Lori’s mother Donna is now living with Alzheimer’s disease.
For Alzheimer’s Awareness Month this January, Lori is one of many British Columbians joining forces with the Alzheimer Society of B.C. to say, “Don’t change. Even if they do.” The campaign aims to inspire residents 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.
Getting a diagnosis for Donna was a complex experience. After seeing some early warning signs and increasingly concerned about Donna’s driving, Lori and her siblings reached out for an assessment but were initially referred to mental health services. It was difficult to get helpful answers and the family found themselves frustrated.
Lori went back to Donna’s family doctor, and eventually they got a referral to a specialized geriatric clinic in New Westminster. “They interviewed Mom, gave her a test and diagnosed her with Alzheimer’s disease,” Lori said.
Even though they had suspected a form of dementia, the diagnosis itself was a shock for everyone. Conscious about her health, Donna was diagnosed at the age of 87. She’d led an active, independent lifestyle, embraced physical activity and mental stimulation, and was careful about her blood pressure and cholesterol.
“Risk factors are aspects of your lifestyle, environment and genetic background that increase the likelihood of developing a disease,” said Mary Beth Rutherford, Support & Education Coordinator, First Link at the Alzheimer Society of B.C.’s resource centre serving Trail residents. “While controlling some risk factors can reduce the likelihood of dementia, it doesn’t necessarily protect a person from developing dementia.”
The family was connected to a nurse who went over local services available to them in the community, but they struggled at first. “There wasn’t much out there for someone like my mom, who lived alone,” Lori said.
Donna wanted to live on her own for as long as possible, maintaining connections through visits with Lori’s brother, who lived with his family nearby. However, the family found navigating the system and finding appropriate home support for Donna difficult, largely because Donna was still able to care for herself and Lori was advised to call back when Donna hit a crisis point.
The family’s goal was to prevent a crisis, so Donna spent time living with her children in Ontario and Washington, or with one of them living with her in Vancouver.
Accessing services was already challenging before COVID-19. The average wait time for a bed in a residence suitable for Donna is one to two years in Vancouver and Toronto. They found very few places that offered specialized care for active people living with dementia, with the monthly costs between $6,000 to $12,000.
The pandemic has further complicated the family’s dementia journey. “Community care is extremely limited,” Lori said. “Even hiring private home care was risky before vaccinations. The border closure excluded Donna from staying in Washington and has made it difficult to travel to see her in Vancouver.”
Lori has become an advocate for change because of her family’s experiences throughout the progression of Donna’s disease – from their difficulties in getting an actual diagnosis to finding adequate care for her. There have been complications at every step – and moving around within B.C. and outside of it has shown Lori that the issues are systemic and need to be addressed everywhere. She recognizes dementia needs national attention and action.
“There need to be innovative measure to care for and support people living with the disease and their families,” she says. “It’s not the fault of the people doing the work,” she said. “They’re doing the best they can.”
The family’s journey has been eye-opening for Lori, who reflects on the fact that her decades of experience as a registered nurse didn’t prepare her for it. “Even as someone with experience working within the system, this has been a huge challenge,” she said. “What must it be like for others?”
While managing a complex situation, Lori and her siblings have worked hard to keep Donna engaged and supported, continuing to show up for her. “As caregivers, we try to support her by anticipating her needs and giving her opportunities for independence.”
During Alzheimer’s Awareness Month, the Alzheimer Society of B.C. is sharing the stories of people like Lori and encouraging the public to visit www.dontchange.ca. Visitors can learn about the campaign, discover resources to help them stay connected to people in their lives affected by the disease and find support from the Alzheimer Society of B.C.
“In an increasingly uncertain world, it is so important to show people living with dementia they’re not alone,” said Rutherford.
Become an advocate
You can become an advocate to support British Columbians living with dementia. There are many issues of importance to families affected by dementia, but the pandemic has shone a light on problems arising from changing public health orders, social isolation and the strain of B.C.’s health-care system, including:
- The guidelines around long-term visitation and essential visitor status.
- The suspension of adult day programs.
- The need for caregiver respite.
The Alzheimer Society of B.C. believes that family members are an integral part of health-care teams. Balancing the need for safety during outbreaks of the Omicron variant of COVID-19 with the needs of families presents real challenges to the health-care system that will require creative solutions.
British Columbians are invited to register for “Opening the door: Why families are essential to care,”a free virtual event on January 27 from 2 to 3 p.m. It features Alzheimer Society of B.C. CEO Jen Lyle in conversation with B.C. Seniors Advocate Isobel Mackenzie. They’ll explore the importance of person-centred approaches to dementia care that reflect the essential role families play, both in community and long-term care. ASL interpretation will be available. To register, visit alzbc.org/AAM2022-event.
If you want to advocate for issues affecting people living with dementia or support the Alzheimer Society of B.C. by making a donation, visit alzheimerbc.org.
Are you concerned about dementia?
If you are concerned about dementia or have recently received a diagnosis, you may be feeling anxious about lies ahead for you. The Alzheimer Society of B.C. can help. To learn more about getting a diagnosis or find services for people living with the disease, visit alzheimerbc.org or call the First Link Dementia Helpline at 1-800-936-6033.
To register for a webinar, visit alzbc.org/webinars.
People living with dementia can still have an impact in their community and on the world around them. They can share their stories, become advocates, participate in research. It starts with asking for support. If you are living with dementia, don’t be afraid to tell the people in your life: “Don’t change. Even if I do.”
Lead image: Smith (left) with her mother Donna. Alzheimer Society of B.C. photo
Alzheimer Society of B.C.
