Caring with Compassion: Karen’s story

This National Carers’ Week, we’re spotlighting Karen, a devoted carer to her husband, Peter, who was diagnosed with Huntington’s disease (HD) eight years ago.

For the past two years, Karen has been Peter’s full-time carer, managing not only his daily needs but also helping him navigate the complexities of HD.

A typical day for Karen involves helping Peter with medications, meals, dressing, and ensuring he’s ready for medical appointments or outings with other carers. She also oversees his NDIS plan, making sure it covers all his needs.

According to Karen, one of the most challenging aspects of caring for someone with HD is managing Peter’s cognitive changes.

“Peter requires lots of warning of changes to daily schedules and hates being hurried which are two strong HD traits,” shares Karen. To help, Karen keeps a diary where everything is recorded, so Peter can easily see what’s coming up. She also avoids telling him about minor issues, like household maintenance, to prevent him from getting fixated on them.

The emotional toll of caregiving has also been difficult, and Karen acknowledges how their relationship has shifted from an equal partnership to Peter being completely dependent on her. “It’s frustrating for him, and it can result in outbursts that are unlike his old self,” she says.

Despite the challenges, Karen finds motivation to create meaningful opportunities for Peter. She is proud of his involvement in research studies like Predict HD and Enrol HD, which have contributed to current drug trials worldwide. Peter is grateful for the support from Huntington’s Australia and Neurosciences WA, and Karen continues to advocate for his care and well-being.

For her own emotional well-being, Karen emphasizes the importance of having a support network of family and friends who understand the challenges she faces. A simple text or phone call from a close friend can make all the difference in brightening her day. “The feeling of being part of a community is invaluable,” she adds.

Karen also appreciates the invaluable support she’s received from Huntington’s Australia, including help with navigating NDIS plans, carer outings, and one-on-one social support.

When asked about her advice to fellow carers, Karen says:

“Don’t be afraid to ask for help. Remember that your role makes a difference, not only for the person you care for but for the whole community too.”

For Karen, seeing Peter live his best possible life, surrounded by social connections, family support, and excellent healthcare, keeps her motivated every day. Her dedication, resilience, and love for Peter are an inspiration to us all.

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