Caregiver Concern Overrides Personal Fear
Last updated: August 2021
There I was sitting knee to knee with my mother-in-law (MIL) in the doctors' office waiting area, offering her hand sanitizer after she had been rubbing her nose and scratching her face. We were there to consult with a surgeon. I was there as her caregiver and to keep track of her medical needs.
In-person medical visits are a necessity
We had approached the medical building wearing our masks; mine a homemade 3-layer fabric mask with filter insert, hers a reused, beaten up surgical mask provided to her by her assisted living facility. As we entered the lobby, our temperatures were taken and we had to verify information regarding possible symptoms, travel, or exposure to COVID-19.
I pushed my MIL’s wheelchair — for which I had thoroughly cleaned the handles before touching them — near one of the few available seats in the waiting area, and I took a nearby seat for myself. Most of the chairs were marked unavailable to encourage social distancing.
Although staff members in the doctors’ office wore face masks, I didn’t witness anybody cleaning seats in the waiting area as they were vacated by other patients. That detail just rattled around in the back of my mind for a bit and didn’t boost my confidence regarding re-entering the world of in-person medical encounters.
Keeping myself and others safe
For the first four months of the COVID-19 pandemic, I self-isolated at home with my husband. Other than going into the grocery once in five months, I had limited myself to entering the pharmacy to pick up prescriptions. Interaction with other people was severely curtailed.
At home, I sewed masks which Rob and I wear in public. The local multi-use bike trails are always so busy that you have to wear a mask. There is no way to completely avoid coming within six feet of another person. After all this time, I continue to do my part to reduce the spread of disease.
Slowly stepping into the scary world of building interiors
In July, I was scheduled for my bi-annual Rituxan infusions at the hospital outpatient infusion center, so I HAD to step foot inside of a building and allow myself to be near other people. I felt confident, however, that all the necessary precautions would be taken to protect patient and health provider safety. I did encounter a few individuals at the elevator bank, but it was easy enough to wait patiently for the next empty elevator after they went on their way.
Speeding into the danger zone
At the end of July, my MIL had a medical emergency and was rushed by paramedics to the hospital ER where my husband met her. He wore one of our masks while obsessively using hand sanitizer at every opportunity and avoiding contact with others. My MIL was tested for COVID-19 upon admittance to the hospital. Fortunately, she tested negative and was allowed one visitor per day for a limited window of time during her stay in the hospital.
Taking personal precautions
During her week at the hospital, my husband and I each ventured out to visit her individually. Turns out, she was admitted to the same unit where the COVID-19 patients stay which made me nervous. Talk about getting too close for comfort to this viral beast we had been avoiding for months. But I took lots of personal precautions for my own safety as a freshly infused, immunosuppressed individual.
Priorities change quickly
As a result of my MIL’s hospitalization, she has been diagnosed with a serious life-threatening condition and needs surgery. We are in the midst of doctor visits and testing in preparation for this potential surgery. I go with her to provide physical support — wheelchair management — and emotional support — as a caregiver and trusted individual who can help explain what the doctor says. I do this not out of responsibility for caring for a family member, but out of love for her and my husband.
Immunosuppression and personal choices
To be honest, jumping back into the world of in-person interactions scares the heck out of me. Rituxan and methotrexate lower my immune system, and I don’t want to come into contact with COVID-19. But as soon as a potentially life-threatening situation of a loved one enters the picture, I quickly set my fears aside. Deep down, I feel I have no real choice.
Being diligent about my own actions
But I do have the choice to be diligent about my own actions — wear my mask with filter inserted, wash my hands frequently, stay away from other people as much as possible, avoid touching what other people touch, avoid touching my own face/nose/eyes, wipe down surfaces that must be shared with others, and pray that the medical professionals we encounter in small examination rooms have done much of the same.
As we each learn to navigate difficult choices between maintaining personal safety, helping to protect the health of others, and trying to take care of normal business, my hope for you is peace of mind that you are doing the best you can. I know I am.
Be well my friends,
Read my other articles on MultipleSclerosis.net
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: