I was expecting to hear how COVID-19 has added to caregivers’ burdens when my placement with the Regional Geriatric Program of Toronto began in early April as part of my Canadian Frailty Network Fellowship.
Since the goal of the placement is to develop resources for caregivers caring for older adults at home during the pandemic, the first thing to do was to talk to caregivers and identify their needs.
People who know me and are familiar with my work know that I have a grim view of caregiving influenced by my own caregiving experiences. I felt unseen, unappreciated, isolated, lonely and mentally exhausted. So when people talk about the positive experiences of caregiving such as strengthened relationships or personal growth, I am skeptical.
However, the five family caregivers I spoke with surprised me with their resilience, creativity and sense of duty and commitment.
These caregivers had already retired or stopped working many years before the pandemic began. All are seniors who for at least three years have been caring for an older adult (spouse or parent) with various diagnoses and conditions including Alzheimer’s, dementia, stroke, diabetes, seizures, chronic back pain, and mobility issues. Four of the caregivers live with the care-recipients.
As you can imagine, COVID-19 has created additional challenges, disrupting routines that have taken considerable time and effort to plan.
Cancellation of daycare programs, for example, has robbed care-recipients of social activities that contribute to their well being and caregivers of time alone. The disruption to homecare services has meant care-recipients sometimes do not see their usual personal support workers who are familiar with their needs and routines, a source of anxiety for care-recipients and distress for caregivers.
A significant additional concern for caregivers has been to keep themselves and the care-recipients COVID-19 free. “What if something happens (e.g. a fall) to him/her” or “what if something happens to me” is a common concern as they worry about taking their loved ones to medical appointments or emergency rooms.
Caregivers now must not only keep an eye on health conditions (e.g. monitoring blood pressure, temperature) but also consider life after restrictions are lifted or loosened (would they send their loved ones to a long-term care home?).
Contrary to my expectations, every caregiver cloud had a silver lining. Caregivers have embraced the peace and quiet COVID-19 has forced on their lives. They are enjoying living in a “relaxed atmosphere” where they do not have to navigate traffic or commute to countless medical appointments. They know medical appointments and services are necessary but their high-maintenance life has been eased somewhat. They have found time for self-care, for reading. They even sleep better.
I have been in awe of their problem-solving skills and positive outlook in dealing with the pandemic. They quickly have developed routines they perceive as being necessary to cope, including plans to engage their loved ones with physical exercise, music time, walking the dog, chatting with neighbours while six feet apart and phone calls with family and friends.
They are happy and proud to have learned how to online shop and to use Zoom and FaceTime. They happily have taken advantage of shopping hours for seniors.
To lessen their anxiety about COVID-19, they often consult healthcare professionals such as nurses or their family physicians. They have educated themselves so they can ask pertinent questions. They have taken the time to develop contingency plans or work on survivor notebooks.
They have learned to take advantage of community and care services such as online deliveries, meal services for seniors and nurse visits at home or going to urgent care clinics instead of the emergency room visits.
They have accepted the challenges brought on by COVID-19 and believe that at this point in time they need to put their loved ones before themselves.
I acknowledge that this does not represent the reality for all caregivers; for example, those who are caring for individuals requiring more hands-on support or with behavioural issues. However, our senior caregivers are more resilient and creative than we give them credit for. Their lived experiences and sense of commitment have prepared them for this difficult time.