Lessons From the Other Side of the Hospital Bed
Like many people with chronic illness, I often find myself to be the one laying in the hospital bed. The hospital is a familiar place for me living with CF. Although I don’t love it, I understand the maze of tubes, the constant interruptions by hospital staff, the sights and smells of the CF floor, and more. In some weird way, the hospital is a second home and I am comfortable knowing my place is tucked in the hospital bed.
That is until the roles were reversed. Patient becomes a caregiver, visitor, cheerleader and there’s a whole other skill set and rhythm to get used to. That’s where I found myself when my mom had a critical medical emergency and it was my responsibility to advocate and keep her comfortable. Here’s what I have learned from the other side of the hospital bed.
Care is in the details
The hospital is a very, very busy place. Often there’s a lot of patients with a lot of needs and healthcare workers are unfortunately overwhelmed and understaffed. As a result, sometimes things slip through the cracks. During my years of in-patient care for CF, I quickly learned that good care is in the details. Whether that’s extra kindness from the hospital staff, new linens on the hospital bed everyday, comforting items from home, or a provider taking the time to just check up on you.
The little details like that truly matter and they make a difference in your care and experience staying in the hospital. My mom always excelled at that when I was in-patient. She never left a single detail unnoticed when it came to my care, and now, I see how it truly mattered. When the tables turned, I did the same for her, paying extra attention to how I could make her more comfortable and cleaner, while ensuring she was heard by the staff and our family.
Advocating takes practice
When my mom was in the ICU, it was very hard for her to advocate for her own needs. Her situation was also very critical so information was changing quickly and it was overwhelming at first. Learning how to advocate for myself all these years was great practice for this very stressful time spent in the hospital.
Eventually, even my siblings and other family members learned how to best advocate and effectively ask questions to help my mom’s situation too. It took practice, but as a family we got to a place where we felt like we were communicating effectively and clearly to the team with my mom’s best interests at heart.
Company is the best medicine
Even with the hustle and bustle of constant interruptions, the hospital can be a lonely place. I have never felt so deeply lonely than during my month-long hospital admissions for CF exacerbations. Having company and visitors really was the best medicine for my emotional and mental well-being. That’s why we made it a point in our family to keep my mom company while she was admitted. Not only does a second pair of ears help discern and make sense of medical information, but it makes time speed up in the hospital and breaks up the disorienting monotony. Having company to hold your hand is truly the best medicine all around.
All in all, each day that my mom improved, I felt more and more thankful for my own experience in the hospital to help guide me during that stressful time. In a weird way, my time spent with her in the ICU and after was rewarding since I was able to care for her in the very special way she cared for me.
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