S3 - EP15 - Life After MND: Colleen Clarke’s Story of Love and Loss

In this episode, Rosie Gill-Moss speaks with Colleen Clarke, a widow from Australia who shares her deeply personal story of losing her husband Steve to motor neurone disease (MND). Through a candid and honest conversation, they explore the realities of caregiving, the emotional toll of terminal illness, and the resilience required to parent a young child while facing unimaginable loss. This powerful episode touches on motor neurone disease, grief, widowhood, parenting through terminal illness, and the long arc of healing.

Colleen and Steve met as teenagers and spent over three decades together. Their love story, which began with a pub dance and grew through years of shared life, took a devastating turn when Steve was diagnosed with MND—also known as ALS. Colleen recounts how the illness slowly robbed Steve of his ability to speak and move, and how she shifted from being his partner to his primary carer. She explains the uncertainty that surrounds MND diagnosis, the slow progression of symptoms, and how the family held on to normality for their daughter, Sarah, for as long as possible.

Listeners hear how Sarah was conceived after years of IVF and a surprising encounter with Brazilian jungle herbs—an unexpected yet joyful part of Colleen’s story. But the joy of becoming a mother was followed just five years later by the slow, cruel advance of MND. Colleen explains the emotional and logistical challenges that came with managing a terminal illness at home: palliative care planning, home adaptations, medical equipment, and navigating grief in real-time. Her experience highlights just how fragmented the support system can be, but also shows the difference strong community networks and dedicated carers can make.

As Steve’s health declined over three years, Colleen found strength in peer support, online communities, and palliative care teams who helped maintain his comfort and dignity. She also reflects on the communication barriers that emerged as Steve lost his ability to speak and how they found new ways to stay emotionally connected—including using an alphabet board and pre-recorded messages. Her story underscores the emotional complexity of being both wife and caregiver and the internal conflict that arises when love and duty become indistinguishable.

Colleen also shares the impact Steve’s death had on Sarah, who was just eight at the time. They discuss the delicate balance of protecting a child while being honest, and how Sarah eventually returned to education after years of disengagement. Now 18, Sarah is pursuing a degree in film and media—testament to her strength and the care her mother put into helping her navigate grief on her own terms.

This conversation offers rare insight into life with MND and the long road of widowhood that follows. Colleen’s story is a vivid account of emotional survival, practical adaptation, and the enduring strength of mother-daughter connection. Her openness about depression, the challenges of solo parenting, and her cautious optimism for the future provides real-world understanding for anyone dealing with terminal illness, bereavement, or solo motherhood.

Key takeaways from this episode include the unpredictable progression of motor neurone disease, the importance of early palliative care involvement, the hidden toll on carers, and how children experience grief differently. It’s also a testament to how human connection—through peer support groups, counselling, and shared experience—can anchor someone through the darkest seasons of life.

Whether you’re supporting someone through illness, grieving a partner, or parenting alone, Colleen’s story will stay with you long after the episode ends.