ALS: A Patient’s Hospital Journey Through the Eyes of their Care Coordinator

When someone living with ALS is hospitalized or moves into a nursing home, their families often find themselves navigating complex care systems with little support. Most hospitals and long-term care facilities are not set up with ALS in mind, and many staff members have limited experience with the disease. That lack of familiarity can leave families feeling overwhelmed and anxious, especially when they’re unsure whether their loved one is receiving the right care.

As a Registered Nurse and care coordinator—and as a mother who has cared for two sons with ALS—I’ve seen firsthand how challenging these transitions can be. Home health agencies may initially accept a referral, but after learning it’s for someone with ALS, they may say they’re “short-staffed” or unable to move forward. Often, it’s not a staffing issue, but rather a lack of confidence and understanding when it comes to ALS care.

Recently, I supported a family whose loved one was hospitalized at a large, well-respected medical center and later transferred to a rehab facility. While the teams were compassionate and well-intentioned, they had limited knowledge of ALS. The family remained at the bedside around the clock—not because they wanted to, but because they were concerned about gaps in clinical knowledge, from managing a patent airway to performing basic oral care.

Together with the family’s Synapticure neurologist, Dr. Dhir, we stepped in to provide critical support and education. We helped the team understand the patient’s communication abilities, introduced augmentative communication tools, and connected the family with speech and language services. These small interventions made a big difference—and highlighted the need for broader ALS training across care settings.

When the patient transitioned to a rehab facility, we continued advocating. Each new setting meant new staff, new questions, and renewed efforts to ensure safe and informed care. The family, now more confident and empowered, stayed involved every step of the way. I remained in close contact with the care team, working alongside the unit manager and social worker to address needs as they arose.

After six weeks across two care facilities and persistent coordination, we were able to help this patient safely return home. While there were challenges along the way, the family was deeply relieved to have their loved one back home and told me they couldn’t have done it without the support of Synapticure, Dr. Dhir, and myself.

One of the reasons I joined Synapticure over three years ago was because of our mission to democratize ALS care—because every family deserves help navigating these choppy waters. I’m proud to walk this path alongside my patients and their families and to fight for the care they deserve.

Rebecca
Synapticure Care Coordinator & RN