When a Loved One is Hospitalized During a Pandemic
By: Amy Daniels
Tags: Disability, Special Needs, Covid 19, This Happened To Me, Parenting

When a Loved One is Hospitalized During a Pandemic

Being a caregiver for your loved one who is hospitalized during a pandemic adds a level of difficulty and stress that might not have been there during other times.

During non-pandemic times when therapy dogs were allowed to brighten hospital stays.

My daughter had been in and out of hospitals her entire life as she battled a brain tumor. And if she had to stay overnight at the hospital, I stayed overnight right alongside with her. I knew the ins and outs of hospital stays. I knew what to pack, what instructions to leave at home, and I knew what to expect. While my daughter was a pro at enduring hospital admissions (chronically ill kids are of the toughest breeds), I was a pro at navigating the world of caregiving at the hospital.

My professional status, however, got turned upside down when she was admitted to the hospital during the pandemic.

Emily had a physical disability and a cognitive delay. I was not only her mom, but her voice, advocate, and as of her 18th birthday, her legal guardian. So on a Friday morning not too long after her 21st birthday when she fell, stating that her legs stopped working, I knew what to do. In my long practiced calm manner, I made sure she wasn’t in pain, packed a bag and set off to the hospital after letting my husband and teenage son know what was going on.

A few (seven) hours after arriving in the Emergency Room we learned that she would need to be admitted to the neurology unit for further testing. I nodded my head — not surprised to hear this news after Emily’s decades long stints in and out of the hospital. She would be admitted to the adult side, though, now that she was no longer considered a pediatric patient. Again, this makes sense. It was now almost 10pm as we received this news and I was just thankful to be getting out of the hard-plastic ER chairs.

First, the ER nurse said, she would need to take a COVID-19 test. Emily tilted her head back and took the test like a champ. It was nothing compared to what she usually has to endure at a doctor’s appointment.

Fifteen minutes later the ER nurse reported that the test was negative, and we could go up to the room. The nurse then looked at me and said, “Visiting hours are from 1pm — 9pm.”

“Okay,” I replied with a smile under my facemask as I gathered up my bags ready to go upstairs with Emily, looking forward to the plush pleather recliner waiting for me in the inpatient room.

The nurse, though, didn’t move. In fact, she continued to just stare at me. I looked back at her and smiled again.

And then it hit me. Emily’s an adult. “Oh! You think I’m a visitor?”

“Yes,” the nurse replied, “and, sorry, visiting hours are over.”

“Nope.” I shook my head and explained that I was Emily’s caregiver and we’re a package deal –- I wasn’t going to leave her. A few phone calls and 25 minutes later, we were both escorted up to Emily’s inpatient room on the adult side of the hospital.

“How do visiting hours work in the adult unit?” I genuinely asked the nurse. Up until this point, Emily had only been in the pediatric unit and not during times of a pandemic. The unit nurse, like most we had come across during Emily’s numerous hospital stays throughout the years, was kind, smiley, and had just brought me a pillow and blanket for me to use that night. She explained that due to COVID restrictions visiting hours were strictly enforced. She then relayed that only one visitor was allowed per the entire hospital stay.

One assigned person per the entire length of her stay. And I was the one person.

“What if I run home for an afternoon? Can Dad come in while I’m at home?” I (desperately) asked? Although Emily was technically an adult, cognitively and emotionally she was still a child who needed her mom and dad, especially when she was sick. I was met with a stern, yet sympathetic, NO.

There would also be no volunteers in the hospital who usually would visit patients, giving caregivers a small break. No pet visits either, a highlight of hospital stays for my daughter. My mind started reeling.

Then she told me I had to go downstairs and get screened for COVID-19 daily. Earlier that day I was given a color-coded wristband in the Emergency Room after getting my temperature taken and answered screening questions. I learned I had to go through this process every day of Emily’s stay as each wristband color was linked to the day of the week.

Not only was I starting to wonder how Emily and I would get through this hospital stay with no other visitors allowed, I also started worrying about getting a fever. But I wasn’t worried about the illness.

I was terrified I would get flagged at the screener and be told that I couldn’t be with my child during the time she needed me the most.

For the three-week duration of my daughter’s stay in the hospital, as soon as I woke up in the morning, I walked down to the lobby to have my temperature taken and get a new wristband. Each walk down that hallway included silent, nervous pleas and prayers that I didn’t have a fever. Not that my child would get better. No, those walks were for prayers that I would be healthy enough to stay with my child.

Under normal circumstances, I would’ve gone home to do laundry, pick up more supplies (clothes, toiletries, snacks, etc.) and spend time with my son while my husband or parents stayed with Emily in the hospital. We never left her alone in the hospital room for more time than it takes to run down to the cafeteria. But since I couldn’t have anyone else come stay with her, I was stuck in what was starting to feel like a prison.

After five days of our stay, my husband and son drove to the hospital to bring me a new bag of clothes. But it was our nurse who was the one who went to the main entrance of the hospital to greet them, stating it was just easier if she went down to collect the bag rather than me going through the whole screening process again. I gulped back the pain of not being able to set my eyes on the rest of my family and agreed to this in order to make sure I could continue to stay with Emily.

I started eating two meals a day — a late breakfast and an early dinner. Those were the times that the doctor was likely not to visit and that Emily would drift off to sleep. A friend of mine knew someone who worked at the hospital and gave her a bag of snacks and goodies to deliver to me during her next shift so that I would have something to eat for those times I didn’t get a chance to go down to the cafeteria. I was growing more and more dependent on others to take care of me while I was doing my best to be there for my daughter.

It goes without saying that hospital stays with a loved one is tough. It’s an all-level low during times of COVID-19 restrictions. Not only does most of the responsibility of coordinating care and discussions with doctors fall on the shoulders of the one person allowed to visit, it’s heartbreaking for the other family members and friends who want to spend time with the patient but aren’t allowed. Most of all, though, it’s painful for the patient to not visit with their family members and close friends during a time they may need it the most.

Em and I got through this hospital stay with the help of our support system at home and the kind doctors and nurses surrounding us in that room.

If you are a caretaker to someone who is at risk of going to the hospital, remember that your health, now maybe more than ever, needs to take a priority. Do what you can to stay healthy so that you are able to take care of your loved one if they are admitted to a hospital. Limit your outings, wear a mask if you must go out, eat healthy, and take long walks to get your heart rate up and keep your mind clear. If you have a loved one in the hospital and you are not allowed to visit, try to utilize technology by video calling and sending emails and text messages. And thank those nurses who are spending time with your loved one trying to make them as comfortable as possible.

Like most things in life, though, COVID-19 restrictions did have a silver lining. While my husband and son were bonding at home, it forced me to really be in the moment with my daughter. It was she and I in that room day after day, night after night. We became one. We laughed together, we cried together, we got bored together, and we dreamt together. I learned to cherish the fact that I was lucky enough to be the one with Emily during that hospital stay.