Dementia in the days of COVID-19: Naomi's story

Naomi’s update: One year later

Naomi Mison of Kelowna, B.C. is a member of the B.C. Leadership Group of Care Partners and long-distance caregiver to her mother Frances, who lives with dementia in long-term care in Alberta.

When we first shared your experience supporting your mother during lockdown, it was June, and you were doing your best to be there for Frances remotely in any way you could; you were constantly sending gifts and making video calls. How long did that period last for you and what was it like as the months stretched on? How are you both doing now?

That period is still going on now. Nothing has changed in terms of trying to support my mum remotely. We still participate in video calls weekly, and I routinely order books, gifts, flowers and food for her. I went to visit my mum at the beginning of October for her birthday. It was the first time I had been permitted in her room since the start of the pandemic. While celebrating her, I was also trying to tidy up her room, exchange her books, swap out a dead battery in her clock. It is very difficult to provide care when you are not allowed into your loved one’s room.

On October 22, an outbreak was declared at my mom’s long-term care and she contracted COVID. It was devastating, especially not being able to do anything to help. Your mind goes to worst case scenario, but once the two weeks had passed and she was given a clean bill of health, I felt an enormous sense of relief. It was difficult though because she was asked to stay in her room for a month straight while others in the home were infected. The outbreak lasted until January. In total, 61 residents and 122 staff had confirmed cases of COVID, and regretfully 28 people passed away. This is unimaginable and I hope there is systemic change in long-term care as a result.

I am doing as well as can be expected, but it has been an extremely stressful situation that will have long-lasting impacts.

Were there any challenges or successes along the way in navigating the separation that stand out for you?

Challenges: Not being able to see my mother, especially at Christmas; knowing that she is lonely, and I cannot come visit her; my mom being asked to stay in the confines of her room for over a month; not being able to order her food as the home was not accepting external items.

Successes: Video calls and seeing her smile, getting to see her for her birthday; sending her a Christmas package full of goodies; learning about new technologies to improve access and overall quality of life.

You expressed at that time that you were hopeful that COVID-19 would be a catalyst for change in addressing the inequities of long-term care. How do you feel about that now?

I still have hope, but I am not overly reassured. Many of the recommendations in the Staying Apart to Stay Safe: The Impact of Visit Restrictions on Long-Term Care and Assisted Living Survey have not been implemented. Moreover, Ontario’s Long-Term Care COVID-19 Commission unveiled its final 322-page report recently that said by the time the armed forces arrived at the homes (in Ontario) identified as most in need of attention, "they found deplorable conditions." I can appreciate the government officials are still tackling the pandemic, but there are things that can be done right now to improve the lives of seniors living in long-term care.

You also spoke about being a young caregiver – something that we don’t necessarily see represented in the media or more broadly. Has speaking up publicly, including during your panel discussion in January, connected you to other caregivers in your situation?

I have had a few fellow caregivers reach out and acknowledge the strength it takes to show vulnerability, but I have not connected with as many as I would like to.

If you knew then what you know now about the pandemic, what, if anything, would you have done anything differently as a caregiver?

I wish I had the financial means and government supports were in place to afford me the ability to have removed my mom from long-term care at the onset of the pandemic.

How has COVID-19 changed your perspective?

It has demonstrated that you have little control once your loved one moves into long-term care. Caregivers were left out when Provincial Health Officers made the decision to close all long-term care homes to non-essential visitors. Many seniors died due to loneliness as opposed to COVID itself. Risk mitigation is critical, but many older adults would rather see their family and take the chance. My hope is that caregivers will be invited to the table in the future when there is decision making that has a direct impact on their families. We are a key member of the health-care team and need to be treated as such!

Naomi’s story: Long-distance caregiving during COVID, “Doing anything I can from where I am” (June 2020)

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).

To explore the rest of our "Dementia in the days of COVID-19" stories, visit: alzbc.org/COVID-stories.