OUTSIDE IN THE COLD: Caregiving During Covid19

Caregiving during Covid19 has put a huge, extra strain on caregivers. It's hard enough walking the journey of illness or disability with someone you care deeply about, but the pandemic has amplified our pain by separating us from our loved ones in hospital or long term care. We're forced to wait in the parking lot or outside the window while our loved ones try to manage finding their way down unfamiliar halls to a clinic appointment. If we're lucky, the physician or nurse will place a call to enable the caregiver to join in a consultation meeting over the phone. Sometimes, all we want is to speak to a loved one or a nurse - especially if a loved one is an inpatient and we have urgent questions or information to deliver. Maybe just need or want to say "I love you." Performing our normal roles of navigator, comforter, keeper of health histories, reporter of symptoms - we are attempting to carry these out from outside, across what feels like a wide distance. It's as if we are knocking on the door, softly at first (because we know people inside are so busy fighting an invisible enemy). But then, worry grows and grows until weeping, we abandon all social conventions and bang on the door till our knuckles bleed. 

I know this feeling. Our son Nicholas lives in a small (wonderful) medical group home. Until recently, we could visit only through triple pane windows and then a little later, outdoors with a plexiglass sheet between us. Just over two weeks ago, rules were relaxed to enable indoor visits (with masks) by designated family members or best friends. That privilege has not extended to me attending important clinic appointments with my husband. I've learned first-hand what it's like to help, but not help - to be shut out of my natural caring role for my spouse. We've been married for 43 years and it drives me to distraction not being able to support him in person the way I feel that I need to.

A 'stress doodle', done in the car, outside the hospital.

The call from family members to be labelled 'essential partners in care' during Covid zero visitor policies has been heard in some parts. Last week, an Ontario private member's bill called the #MoreThanAVisitor Act passed the second reading. If passed in provincial parliament, all Ontario patients in hospitals and long term care homes will have the right to designate one or more 'essential partners in care' who will be considered not as visitors, but as part of the care team.

In the US, many states allow designated family members at the bedside of loved ones in long term care. Here's a handy interactive map showing whether states enable family presence in hospitals and long term care. 

Family caregivers have led the charge to be rebranded from 'visitors' to 'essential partners'. The work we do to support the life and wellbeing of ill, elderly or frail loved ones may have been invisible before, but without our labours of love during this pandemic, patient outcomes have proven to be far worse. So now, finally, the realization is dawning on policymakers that patients need their families and front-line staff require the second set of hands that come with our presence. It's about time.