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Caregiver-led group offers advice

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July 11, 2016, by Pat Morden, Caregiver Exchange

Sara Shearkhani and Carole Ann Alloway Sarah Shearkhani didn’t know where to turn when her 32-year-old husband was diagnosed with a brain tumour. She didn’t know the term “family caregiver,” and nobody on her husband’s healthcare team addressed her as one: she was seen only as “the wife.”

A year after his health stabilized, Shearkhani became a volunteer for Patients Canada, a patient engagement organization. Working with patient advisors, she came to realize the importance of her roles as a family caregiver and decided to share her story with others. The story was published by the Globe and Mail in June 2014. She wrote in part:

“Have you ever felt that you are trapped in solitary confinement under an annoyingly-low ceiling painted with cloudy figures of people? Have you ever felt that the sky is made of cement, and so close to you that you cannot bear its weight on your heart? Have you ever felt that breathing is hard and painful? That you needed to run away and leave everything behind? Have you ever lost your dreams? Felt loneliness was eternal?

Well, cancer makes you feel all of the above. But don’t get me wrong – I am not the cancer patient. I am the caregiver.”

Her words struck a chord and emails and letters poured in. Shearkhani connected with Carole Ann Alloway, a fellow family caregiver, and together they launched Family Caregivers Voice, a caregiver-led volunteer group.  The group offers free educational presentations for caregivers and maintains a website. Through their awareness campaign, the organization also offers sessions for health care professionals, to help them see the vital role of family caregivers in patients’ lives.

Family Caregivers Voice offers a variety of practical tips for caregivers, including:
  • Develop a support network for yourself and the person you’re caring for.
  • Learn self-advocacy.
  • Seek professional help if you’re dealing with negative feelings that won’t go away. Speak to your family doctor or a social worker.
  • Remember that the journey of caregiving is not a linear process: it’s full of ups and downs.
  • Consider your limitations and say “no” to caregiving responsibilities you can’t handle alone.
  • Educate yourself and other caregivers.
To dive a little deeper into these topics, visit our special feature, Steps to Helping Someone with a Health Condition.


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