Dementia in the days of COVID-19

During this time of increased isolation due to the COVID-19 pandemic, many people living with dementia and the people who care for them are disconnected from support networks and facing unexpected challenges. It is the Alzheimer Society of B.C.’s mission to ensure that no one walks alone on the dementia journey. Now and in the coming weeks, caregivers and people living with dementia will share their everyday challenges and successes as a part of our Dementia in the days of COVID-19 series.

Naomi’s story: Long-distance caregiving during COVID, “Doing anything I can from where I am”

Take-out dinners, magazines, books, flowers, clothes, a tablet: the list of comforts Naomi Mison has delivered to her mother Frances, who lives with dementia in long-term care, is continually growing alongside the difficulty of months without seeing each other.

Few people Naomi’s age can understand her journey with dementia. It began when she was barely in her 20s, marked by the loneliness of learning how to navigate becoming the caregiver to a parent while embarking on her own adult life. More than a decade later, she’s an expert on the topic: her mother’s care partner, legal guardian and support at medical appointments, which she travels from Kelowna to Edmonton to attend. Since the COVID-19 pandemic was declared and Frances’s care home went into lockdown, Naomi has been learning how to cope with even more distance between them and taking every opportunity to show her mother she’s not alone.

“I just want to give her a hug and I can’t,” Naomi says. “We’re going on to three months that I haven’t seen her now. I’m doing anything I can from where I am – and I have to be ok with that.”

Finding moments of joy

Naomi is hoping to visit Frances in the upcoming weeks, despite the complications that have come along with COVID-19. The cost of flights has skyrocketed, the expectation to self-quarantine for 14 days after inter-provincial travel remains and the care home’s guidelines for visits (currently only offered via window) are subject to change at the discretion of management. With so much uncertainty, what does she know for sure?

“Even if you’re upset, it’s really hard not to smile while you’re dancing,” Naomi says. “I would really like to have once-a-week [video] dance parties with my mom.”

Like others isolated during the pandemic, video calls have been essential to the pair.

“It brings me joy and judging by her smile, it brings her joy too,” she says. “I’m really enjoying that part of it, but it’s often difficult because one day will be good and others won’t, depending on the day or the time.”

Looking to the future

Throughout the challenges, Naomi has remained grateful for the staff who assist Frances with making video calls and keeping them connected – but keenly aware of the painful toll COVID-19 has had on so many other care homes across the country.

“This is such an unfortunate incident, but if there’s any good that can come out of the pandemic, it’s the spotlight that it’s put on the inadequacies of long-term care. We all have to do something about this. People who have been in the system already knew, but for the public seeing this for the first time, they can’t look away.”

Along with the knowledge Naomi has gained as a caregiver, she’s also found her voice as an advocate, including as a member of the Alzheimer Society of B.C.’s Leadership Group of Caregivers. On her wishlist for change: the standardization of care across provinces and a time when other young caregivers have the support of others who’ve walked the same path.

“I would love to be a beacon for other people in this situation,” Naomi says. “My hope is that by sharing my experiences, it will allow others to avoid even a fraction of the burden. It’s very difficult to talk about, but it’s so necessary.”

f you have questions or concerns about dementia or caring for someone living with dementia, call the First Link® Dementia Helpline. Monday to Friday from 9 a.m. until 8 p.m. in English (1-800-936-6033) and from 9 a.m. until 4 p.m. in Cantonese or Mandarin (1-833-674-5007) and Punjabi (1-833-674-5003).

 


Last Updated: 06/16/2020