Strength in Care: Helen’s Story

For National Carers’ Week, we’re sharing Helen’s story as an inspiring example of the strength, adaptability, and commitment that many carers embody.

Helen’s husband, Michael, was diagnosed with Huntington’s disease (HD) in 2018, and their lives shifted significantly. As a nurse, Helen quickly educated herself about HD, but no amount of preparation could fully capture the realities of caring for a loved one with the condition.

“I kind of became a carer in many different ways, for many different people.” – Helen

Helen’s caregiving role expanded beyond Michael—she also cares for an 85-year-old friend and provides support to others in her life.

In 2020, when Michael’s condition began affecting his behavior, Helen retired earlier than planned to dedicate herself to his care full-time. Her days start early, with moments for herself in the garden before tending to Michael’s needs.

Although Michael’s physical symptoms are managed well through medication, it’s the neurological and personality changes that have posed the greatest challenges. Helen describes the experience as seeing her husband transform into someone she doesn’t always recognise—he can become stubborn or aggressive, traits that were never part of his personality before HD. This shift has changed the nature of their relationship, yet Helen remains committed to looking after his needs.

What motivates Helen is her commitment to create meaningful experiences for Michael.

“I want to give him the best life possible,” she emphasises, recalling how they traveled together early in his diagnosis to make cherished memories.

Helen stresses the importance of mental health care for carers, regularly seeing a psychologist and counsellor to manage the emotional toll of caregiving. She also takes time for herself, recharging by stepping away for a couple of days when possible, while other carers look after Michael. She says that taking breaks are crucial—a reminder for carers that self-care is just as important as the care they provide.

For those new to caring for a loved one, Helen encourages reaching out for support. “Huntington’s Australia has been an incredible resource for us,” she shares, highlighting the importance of seeking advice from specialists and connecting with other carers.

Her message to fellow carers is simple but powerful:

“You’re allowed to grieve, to get angry, and to feel everything you’re feeling. You don’t have to be stoic all the time.”

Helen’s story reminds us that while caring for someone with a complex condition like Huntington’s disease can be overwhelming, support is available, and carers can find strength in each other.

Helen’s dedication to giving Michael the best possible life, even in the face of adversity, is a testament to the resilience and love that carers provide every day.

This National Carers’ Week, we celebrate carers like Helen who exemplify compassion, patience, and unwavering commitment.

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