Covid Chronicles: A Long Road

I really shouldn’t complain. I haven’t lost my housing or job. I have plenty of food and toilet paper, and so far, no close friend or family have died from COVID. That said, this is hard. In fact, this is exhausting.

During the spring and summer, I gave positive COVID results to a number of patients from the safety of my home, thanks to Telehealth. But the reality of telling patients how to self-quarantine when there are six people living in two rooms with one bathroom, or giving resources about where to go for food and other basics because the household provider lost a job, or can’t work because s/he is COVID positive, is tough. Tough on the recipient of the advice and tough on me.

This semester I’m teaching first year medical students how to talk with patients. It is their only non-Zoom class, and we suit up with masks and face shields. Sometimes I inch toward my six-feet social distance limit of to hear a soft-spoken student and they grow weary from me asking them to speak up, or if those half way across the room can hear. Old ears and masks, perhaps!

I watch students struggle to use equipment, a stethoscope and blood pressure cuff, with the additional layers of PPE (personal protective equipment). It’s hard to get the stethoscope earbuds in your ears when you have to work around the mask and face shield! In reality, it’s a terrible way to launch a career.

Probably the most difficult elements for me have been dealing with the health care facility where my sister and mother live, as COVID marched through and each turned positive. Trying to advocate for their basic needs and dignity took my anger and frustration to new levels, not to mention straining my efforts to manage both. I kept reminding myself of the old adage you catch more flies with honey . . .

Thankfully, both have recovered with limited lingering symptoms But the emotional trauma they suffered from the social isolation is heart wrenching, and digital media is a woefully inadequate replacement for human connection.

My parents wanted to keep my sister Fran, who has Down syndrome, close during their final years after she was hospitalized with a blood infection and nearly died. Now with my dad deceased and my mom’s failing health, it was no longer meeting her needs. And with the lockdown the health care facility became a prison—Fran can’t see her Mom, can’t go out to day activities. Can’t even play Bingo! That’s a big deal.

With the chronic understaffing, COVID in the facility was just a matter of time. First it was the staff, essential workers who posted Go-Fund me campaigns to cover their unpaid sick time. Then Fran was one of the first patients to turn positive, and the facility was poorly prepared. She went without a shower for over a week, and her laundry piled up. She wore pajamas for several days straight and even missed breakfast a time or two. Many families complained and the facility improved a bit. Eventually, we moved her out, thanks to Mary Rose’s contacts and speedy organizational skills. Now Fran is back in the group homes in Greene County, Ohio that my Dad helped start dozens of years ago. That setting brings other challenges, but she has many delightful housemates and committed staff.

My Mom’s journey with COVID was more difficult. She fell several times before she came up positive. One was a face plant that gave her a black eye and a swollen cheek. That hurt her pride and her confusion increased. When they moved her to the COVID unit, she had a hard time knowing what personal items to take with her.

She arrived in a hospital gown and a pullup, in an unfamiliar room with a television, bed and chair. The first night, it took me several calls to figure out where they moved her, and when security helped me finally reach her on the phone, she was tired and confused. “I want to go to bed, but the nurse told me to wait because she had 15 patients.”

Probably true. I learned she needed a few more items, including a picture of my dad, her husband for sixty some years, as well as clothes, her own nightgown and slippers. I did what my sisters and I had perfected with Fran, using email, and administers’ office phones, and if no response called cell phones to complain and ask for assistance. The next day when I learned she was not allowed to have her own clothes in the unit. Before we had a chance to learn why, Mary Rose went out and bought several outfits to get her through. When we then learned they would not accept brand new clothes because their plan was to keep COVID patients in hospital gowns and diapers so laundry was limited to protect staff, I phoned the CEO on her cell that evening and asked about “their respect and dignity for their clients.” I explained that there was no medical reason to do this for patients who were not bed bound. Mom was permitted to wear the new clothes the next day.

Staff were kind, but carried heavy loads. The administration’s examples of incompetence and poor decisions are long and repeated, and glaringly evident, a perfect examples of the Peter Principle. Granted COVID has been difficult everywhere, but these folks were out of their league and they were caring for our sister and mother, their omissions dismissed by my mother and others because it was a Catholic facility. My response: the Catholics have been mismanaging for centuries.

Quite frankly, it was one horror after another. My patience and forbearance were at their limits. None of her daughters have seen her, or hugged her since March, even the out of town doctors who came to town and brought their own PPE. Only Fran had a short rendezvous in the courtyard when they moved Mom from the COVID unit back to assisted living.

Now with the new COVID wave, Mom faces continued isolation. She is a bit more confused, either a result of damage due to her falls or neurological manifestations of COVID. Digital communication doesn’t really work for her and she’s lost her cell phone somewhere in her room. She desperately wants to get her hair cut.

We’ve attempted to work the system with complaints to the Ohio Department of Health, requests for essential visitor status from the Ohio Ombudsman, and I secured a hospice referral because of her steady decline at age 90. (The birthday was celebrated during lockdown, too.)

I know we are not alone. The impact of the lockdown on the elderly in care facilities is well documented. Conversations with colleagues in the UK tell me they are facing the same problems.  

Patience and forbearance are needed as we struggle to cope and do what needs to be done in our work, in caring for those we love, and protecting our own health. May we all find what we need to gird our loins and keep stepping forward through these difficult and uncertain times – there is a long road ahead.