In an article for Pulmonary Hypertension News Colleen Steele reflects on her co-experience with her husband, Brian, concerning caregiver stress syndrome, a condition of overwhelming physical, emotional, and mental fatigue, often referred to as caregiver burnout. They describe progressing through three stages of the syndrome. Stage 1 began with their son Cullen’s diagnosis of pulmonary hypertension in 2008, and continued through his heart and double-lung transplant in 2014. During this time, the author and their husband supported each other as co-caregivers, balancing the intense demands of their son’s care while also parenting their younger son, Aidan.
Stage 2 began when Brian’s health declined, and the author became his primary caregiver. This phase brought a deeper level of exhaustion and isolation, though Brian continued to offer emotional support when he could.
Stage 3 arrived suddenly with Brian’s death in 2023. Grieving and depleted, Colleen moved across the country to care for aging parents while Cullen began college and Aidan stayed behind to pursue his career. The loneliness and fatigue of caregiving without a partner became even more profound.
The author struggles with guilt—both for feeling lonely and tired despite having support, and for being the only one responsible for major caregiving decisions. Their exhaustion often prevents them from seeking social interaction, and even well-meaning advice can feel overwhelming.
Coping strategies include writing, speaking openly about their feelings, listening to music, watching TV, and participating in online forums. These offer small moments of clarity and connection. The author encourages others to share their experiences with tiredness and loneliness to feel less alone.
Read more at this link on Pulmonary Hypertension News
Summary by Deger Kesimoglu.
