Wednesday 30 September 2020

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.


Elizabeth said...

Donna, this breaks my heart. I can't imagine how difficult it's been and continues to be -- or I CAN imagine, and that's why it breaks my heart. Sending you love and continued strength and courage.

The Caregivers' Living Room said...

Hi Elizabeth!
Oh, thank you for your kind words. I know that I am just one of so many who are in this netherworld of caring from a distance during Covid. We will persevere, of course. I just hope that lessons are learned about what is most important in a pandemic and how we can maintain safe environments without shutting families out.

Unprepared Caregiver said...

Thank you Donna. You provide such great view from the inside and outside. From 'visitors' to 'essential partners' is an issue that all of us need to be aware of as family caregiver are always essential. To consider them anything but essential, is to deny the realities, needs, and benefits of family care.

The Caregivers' Living Room said...

Hi Zachary (Unprepared Caregiver) - you are so right! Thank you.

Unknown said...

Hi Donna,

I came across your blog and was moved by this post. I can't imagine how difficult it is to be living with this on top of everything else that is happening in the world. I've been interacting with caregivers for over a year conducting research on the different stages of caregiving and I have a huge amount of respect and empathy for the caregiving community.

I'm a project coordinator at the University of California, Berkeley where me and my team are conducting a study on in-home technology for caregivers. This study aims to bring support and awareness to the difficulties caregivers face and provide support for them.

Over 300 caregivers have already joined us on our journey and we invite you and your readers to join as well. The technology is easy to use and designed to help, not add a burden to your full plate.

If you or your readers are interested in learning more about what my team is doing, please visit

We'd be so grateful to have you as part of our community!

Wishing you all the best,

The Caregivers' Living Room said...

Hi Clarissa!
Thank you - I'll be happy to spread the word about your study. I'm a co-designer and co-instructor of this Family Engagement in Research course at McMaster University in Canada,interest%20in%20child%20neurodevelopmental%20research.. I do a lot of work on aging as well - I am very interested in your study. Thank you for letting me and caregiver readers of this blog know about it! Donna