Caring for those with Alzheimer's disease — like my grandmother — already felt isolating. Then came COVID-19

This column is an opinion by Emily Fagan, whose grandmother has Alzheimer's.  For more information about CBC's Opinion section, please see the FAQ.

As a former nurse from Brooklyn, New York, my grandmother has spent most of her life caring for others. For over a decade, she was the primary caregiver for her mother and stepfather as they battled Alzheimer's disease and dementia respectively. Then in 2013, she received her own Alzheimer's diagnosis.

Over the last few years, I've watched my grandmother begin to rely more on the support of others — first with driving, then cooking. But between in-home care, regular check-ins and support from my family, and my grandfather acting as her constant caregiver, it's been manageable.

Now, the COVID-19 pandemic has trapped my grandparents in Florida with in-home care cancelled indefinitely. At this point, my grandmother struggles to recognize faces, let alone names, of those close to her. 

Thousands of kilometres from family — their children and most of their grandchildren in New York, and me in B.C., just finished my degree at UVic — the pressure my grandfather faces as the sole caregiver navigating the challenges of COVID-19 is mounting.

Long before physical isolation became an essential part of our everyday reality, Alzheimer's was already an isolating disease — for those diagnosed with it and their loved ones. However, COVID-19 has stripped away crucial elements in the lives of caregivers and people with Alzheimer's: socialization, support systems, and routine.

With over 747,000 Canadians suffering from Alzheimer's disease, my grandparents are far from alone in this struggle. Friends and family can no longer step in to give caregivers a few hours to rest, and the choice to remove a loved one from a long-term care home can be difficult.

"For many of us, bringing our loved one home is simply not feasible, and our great fear is that our loved one will become gravely ill, and that we will not be able to be there at the end of their lives," said Dr. Odette Gould, Professor of Psychology at Mount Allison University and member of Canada's Ministerial Advisory Board on Dementia.

Meeting the emotional needs of those with Alzheimer's and their caregivers, Dr. Gould says, is crucial during this time — particularly through social engagement. 

Which is why recently, I've started a standing Sunday video call with my mom and grandparents. It's an opportunity to check in and engage with my grandmother through interactive memory and physical exercises, along with keeping memory connections as strong as we can. 

Although she has long forgotten our names, it definitely feels like these calls have helped her (and us) to connect when it's impossible to do so in person. Sometimes, I can see a bit of the grandmother I remember — in the way she dances, her laugh. In that moment when she finishes the lyrics to an old song, it feels like she's right back with us.

How can you help those with Alzheimer's and their caregivers

In the interest of helping others get through this difficult time, here are some things that worked for my family. It's based on advice from Dr. Gould and techniques my family has used under the direction of my mother, a speech language pathologist at the College of Saint Rose.

Strengthening connections

One of the best things you can do to help is establish a new routine through scheduling weekly video or phone calls. In our weekly calls with my grandmother, my mother and I share old photos, stories, and music from when she was growing up. My grandmother usually has trouble recognizing people in the photos, so my mother will spell out their names with letter tiles for her to read. 

The point isn't to test her, but reminisce and strengthen the connections she still has. It still hurts, though, when she reads my name and asks, "Who's that?" With time, I know it can only get worse — though we try to focus on the little victories, like retaining her reading skills, in times like these it's hard to stay positive.

Exercise

My mother and I try to keep these calls short — under a half-hour — to not overwhelm her. The most challenging of our activities, we leave for last: exercise. As much as we try to encourage my grandmother to follow the easy stretches with us on the webcam, it often takes my grandfather guiding her through the motions for her to follow along with us. Bilateral hand movements, some of the best for brain stimulation, are often the hardest for her to join in.

Supporting caregivers

It's often difficult for people with Alzheimer's and their caregiver to reach out to others for support, or for those who love them to know how best to help. An easy way to break through this barrier is for caregivers to make a list of ways others can help them — whether that be a weekly phone call, a delivery of groceries, help with household maintenance — and then ask specific people they know to help them with certain items on the list. 

For almost my whole life, I've watched powerlessly as people I love fought a losing battle to Alzheimer's disease. There's nothing that makes you feel more alone than the first time your loved one forgets your name, or the uphill, daily battle to preserve the memories and skills they have for as long as possible. 

But as much as it may feel like it, nobody is alone in this fight. There are thousands of people in Canada battling Alzheimer's, and each of them has family, friends, and neighbours who care for them. If you need to talk, tele-support groups like those for caregivers through the Alzheimer Society are there to listen.

In the absence of normal methods of socialization and support, connecting with those in your life fighting Alzheimer's disease is more crucial now than ever. Sometimes, the best support you can receive is connection with others, and knowing that you're not alone.

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