Another 3 a.m. I could hear my husband’s slow regular breathing. David had finally fallen asleep in the hospital bed which would be his home for several weeks. I, the sentinel, remained ever alert a few feet away in our bed. Watchful yet completely exhausted. Sleep had been elusive for both of us during his first weeks home from the hospital. Mostly we blamed the poison ivy. Not so much the pain and discomfort from his broken neck, back and collar bone.
It was the ultimate cosmic joke that my husband, after catapulting over the handlebars of his bike and breaking all those bones, had landed in a patch of poison ivy. The freak cycling accident had left him both immobilized and tormented by constant intense itching. The poison ivy was running us ragged. Every night, all night, I would carefully apply calamine lotion to whatever areas were bothering him. There it was – inside his neck collar and arm brace. There it was across his shoulders, up and down his legs, between his fingers. He had no mobility so couldn’t scratch or shift positions to minimize the itching. And there was always an itch. We played itch wack-a-mole, especially at night.
The poison ivy, though, wasn’t mentioned at all in the five-minute speakerphone discharge planning session I had with his nurse just prior to his discharge, though it had been a source of torment in the hospital. The nurse quickly ran though her list: his medications; how to change the padding in his neck brace; how to put on and adjust his various braces; how to clean and bandage his torn up back from skidding down the road. Also how to help him into or out of bed with his fractured back without really letting him move his torso; how he should stand in the shower when I bathed him – the list was long. A disembodied voice hurriedly training me to handle so many caregiving tasks I could only try to envision in my mind’s eye because I had not been allowed in the hospital at all because of Covid.
My husband’s accident, hospitalization and discharge to home occurred when the coronavirus was surging in our area. Consequently, non-Covid patients contended with the same no visitor policies that were in place for Covid patients. My previous three posts recount my family’s hospital experience during the pandemic and offer tips to navigate a hospital stay and discharge when families are not allowed to visit because of hospital wide safety protocols to blunt the spread of the virus. Virtual caregiving for a hospital patient frankly sucks. It simply doesn’t work. Too much falls through the cracks because a telephone is a poor substitute for being at bedside. For everyone – patient, family and staff.
Discharge planning from hospital to homebased care is especially fraught when, like me, you are organizing and being trained for complex caregiving tasks via your cellphone. Family caregivers don’t know what they don’t know because they have not been allowed to be at bedside to engage, learn, observe, ask questions, provide comfort, monitor, interact with the doctors and nurses. In short, when zero visitation is in place, family caregivers don’t have adequate access to communicate and collaborate with the hospital care team. And communication and collaboration are the foundation of fostering person-centered care.
Anyone who has been a family caregiver during the pandemic probably feels the same way I did – that frontline family caregivers have been pushed to their breaking point along with all other frontline workers. We are just largely unseen, unpaid and unprepared. We are going it alone. And the list is long. Wound tending – check. Follow-up visit planning -check. Equipment and medical device maintenance – check. Medication dispensing – check. Food service – check. Personal care needs – check. Housekeeping – always housekeeping – check. Above all providing loving, focused comfort care – check.
Family and friends could only mail a much-appreciated care package or offer support over the phone. No one could come over and help in the meaningful ways, large and small, that friends and families do in a time of crisis. And which you realize when it’s gone. A risk/benefit analysis entered into allowing anyone enter our home - even the physical or occupational therapists that David desperately needed. These amazing therapists did come but Covid19 concerns hovered over every therapy session. My brain was a broken hamster wheel twirling between the tradeoffs of real caregiving needs versus exposure to the virus.
And then everyone always tells the caregiver “you have to look after yourself. You need to stay healthy. You have a responsibility to take care of yourself first”. Well-meaning advice, yes. Difficult when you are in the trenches in crisis mode caregiving. And then throw in the pandemic.
Getting a handle on selfcare is hard enough in normal times. But our experience would have been different without the threat of Covid. First, I would have been at bedside while David was in the hospital learning from his nurses on a daily basis how to take care of him, his various braces and slings, his wounds, his poison ivy! I would not have been home alone wondering if I put his neck brace on wrong after changing the inner pads would I paralyze him? I would have been able to meet in person with the hospital discharge planner and advocated for the services we would realistically need once home. I had no idea how to do that when all my interactions as a caregiver were reduced to a few phone calls. Most importantly I would have been there when doctors rounded or nurses dispensed medication or physical therapists worked with teaching my husband how to stand again. I would have been able to talk to them, with David, about his medical status and goals of care.
Once home, I would have so welcomed help from family and friends. I would have actually been able to go inside the doctor’s office with my husband for his follow-up visits to be an extra set of eyes and ears instead of waiting outside in the parking lot as only patients were allowed in the building. I could maybe even have gone for a swim or a yoga class when family or friends offered to come over so I could have a short break. I could have shared a coffee with a caring friend while David slept upstairs. In short, I would have had some important points of human contact that I needed.
Almost nothing has been written about how the pandemic has left family caregivers stranded. We shoulder an enormous burden that is largely unseen in normal times. Curtailed resources, though understandable, impact us greatly. Telemedicine has not even begun to address the enormous role the family caregiver plays in ongoing care. And the informal network of family and friends that every caregiver depends on which paper over the yawning gap in social services has been dismantled by the merciless nature of this virus and its demands to social distance.
So selfcare for the caregiver definitely goes to the end of the line. But having lived through several weeks of intensive caregiving, I know that is a mistake. A big one. Though it is entirely understandable. In those weeks I felt entirely alone and stressed. But I also wanted to really help restore my husband’s health which I knew meant maintaining my own. I just had to figure out how in these globally strange times when we were truly home alone. Weirdly, it all began with YouTube. TBC.
What has helped you, as a caregiver, take care of yourself in these stressful, isolated, truly strange times?