Scott and Stephanie Mclagan live outside of Bend, Oregon. Scott and Stephanie have been married for over five decades. Scott has cared for Stephanie since her ALS diagnosis in 2009. The couple’s story began in 1964 when they met during their freshman year of college. Scott holds a special place in Stephanie’s heart as the one who introduced her to skiing, a sport they both love. Stephanie was a ballerina, a passion she shared with the world as both a performer and a teacher at Central Oregon Community College in Bend. She graced the stage in iconic productions like, “The Nutcracker” and “Swan Lake” while simultaneously using her skills as a seamstress to repair and alter costumes. Together, they raised two children—a son, who is a chiropractor in Beaverton, and a daughter who resides in Bend and works as a hairdresser. Their family has been a source of support and strength throughout their ALS journey.
Stephanie received her life-altering diagnosis on her 64th birthday. The news was a devastating blow, and the couple embarked on a journey into the unknown. ALS had not been a part of their vocabulary, and the emotional toll of the diagnosis was immense. As Stephanie’s condition progressed, Scott realized he needed to be at home to care for her. He made the difficult decision to quit his job, which had included 20 years in the ski industry and a stint in the construction business. With no prior experience in caregiving, he devoted himself to Stephanie’s well-being.
Scott candidly admits to feeling frustrated when Stephanie transitioned from a walker to a power wheelchair several years ago. The sacrifices were substantial, and he found himself tethered to their home, unable to pursue many activities they had once enjoyed together. Communication between each other became difficult as well, and Scott jokes that the house was full of exasperated charades in the early days.
Their daily routine became predictable, revolving around meals, bathroom breaks, and sleep. Encouraging Stephanie to go outside on good weather days became a necessity for both of them. While their relationship evolved, Scott acknowledges that the stress and magnitude of caregiving sometimes strains their interactions. The pain of ALS is multifaceted. Stephanie grapples with physical discomfort, particularly back pain, and depression often lingers as they come to terms with the permanence of their situation.
Scott’s empathy for his wife’s pain is palpable, and he’s learned to navigate these difficult moments as best he can. Accepting help when they need it has been necessary in coping with the changes and losses ALS brings. Scott emphasizes the importance of connecting with ALS Northwest and utilizing resources like loaned medical equipment in order to adapt to Stephanie’s changing needs. Practicality is crucial in their lives now, and Care Services Coordinator Christina Riddock offers guidance and support to the Mclagans for everything from medical care to making their home wheelchair accessible. This relationship with Christina has helped Scott feel a connection with the ALS community.
People often advise him to prioritize self-care, but he admits it’s easier said than done. Scott’s respite from the demands of caregiving lies in outdoor activities. Hiking, kayaking, and skiing provide moments of solace.
Scott’s advice for other caregivers is to do your research, work to establish financial preparedness, and remember the promises you made in your marriage vows. In the quiet moments, the specter of ALS hovers, a constant reminder of their shared journey. Scott’s dedication to his wife, Stephanie, exemplifies the strength of love and the resilience of the human spirit in the face of life’s most formidable challenges.