It seems fitting to launch this blog exactly 7 months after my Mom’s initial emergent surgery on October 19, 2024. She was discharged from her second hospital system this evening and we’re home preparing for a new liquid diet and awaiting an elective surgery we hope to schedule in 2-3 months. After almost 7 months of going through what can only be described as “a whole lot,” we were directly transferred to a hospital we hope is better equipped to handle mom’s medically complex case, while remaining truly aware that so many other patients and their families have seen the depths of diagnoses and treatments we hope to never experience.
This blog is to be a forum for the caregivers, the advocates, the support persons, many of us who find ourselves navigating the sandwich generation. At the moment I find myself just a hop, skip, and a jump ahead of where I was 7 months ago, clueless in terms of how to advocate for my mom in the inpatient hospital system after her first emergent surgery (her only surgery beyond having her wisdom teeth out at age 23 on her first wedding anniversary). As I frantically texted everyone I knew who has ever worked in a hospital, a dear friend’s husband (who was a guiding light more than once when I was at my wit’s end and did not know what move to make next) mentioned to her, “Maybe she doesn’t know how inpatient works,” and my dear friend mentioned that to me.
It occurred to me that even after I managed to advocate for my dad in a different hospital following quadrupal bypass surgery and through his recovery a few years ago (with reassurance from this same caring couple and hours of support and education by phone from my Amazing cousin who worked for years as an RN with patients recovering from surgery), I still didn’t know how to play the game that is the inpatient hospital system. As a family member and an advocate there was not clear direction in a situation of medical complexity who to go to within the hospital for guidance.
So in my quest to figure out how inpatient works from one hospital to another and to support each one of you as you seek the best care for your loved ones, I am writing what I know from our experiences thus far and what I hope to find out. It is my wish that you will find helpful information here and that you will share your experiences so that we all learn and grow as advocates for the ones dearest to us. May patient care and outcomes improve as we learn to ask better questions, to seek better answers, and to come alongside those we love to help them to be seen.
And may we feel seen here.
Hospital Hint: It seems there’s no such thing as a Patient Advocate in our brief experience with inpatient stays. I look forward to sharing this week what I know so far about those in roles that seem sort of patient-advocate adjacent. They sound like they are in the neighborhood of being supportive of the patient and family, but they have very specific roles with the hospital in mind first and it appears they may be burdened with too many cases to effectively provide desperately needed guidance to patients and their support people.
These days every staff member from transport to bedside nurse is encouraged to be an advocate, yet, in our experience, no one’s main job was to truly come alongside the patient and family. And those who served in those roles seemed to have very little power, pull, or sway or claimed powerlessness frequently.
Where my mom was admitted there was plenty of info around on posters about how discharge begins at admission so I asked the bedside nurse on a Sunday evening approximately 24 hours after emergent surgery who the social worker, case worker, discharge planning person was? I didn’t know the term. Her response was that Nothing gets done on the weekends and no one was yet assigned to my mom. I asked if I could have a general phone number where I could leave a message to describe our family’s situation and she wasn’t aware of how I could get that number.
In this week’s posts I’ll introduce you to our experience with the following positions: Patient Experience, Case Workers, and RN Case Managers
Sandwiched Support 
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