Neglect in My Mother's ALS Care, Family Denial, and Caregiver Burnout – Need Perspective & Advice
Original source
Neglect in My Mother's ALS Care, Family Denial, and Caregiver Burnout – Need Perspective & Advice (opens in a new tab)This is community discussion, not verified research or clinical guidance.
A family caregiver describes concerns about his mother’s care, including five days without a bowel movement, painful positioning, and prolonged bed rest. He says he became severely burned out after providing 24/7 care for 1.5 years and is seeking advice about how to respond while avoiding a return to full-time caregiving.
Why this matters
The post highlights how care needs, family disagreements and caregiver burnout can overlap in ALS. It raises concerns about whether the mother’s symptoms and daily care are being assessed appropriately, but the account alone cannot determine whether neglect occurred or what clinical steps are needed.
Limitations and context
This is a single community post, not a clinical assessment or research study. The account reflects one family member’s perspective, and the reported care concerns have not been independently verified.