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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Caregiver self-care

I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.

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I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.

I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.

Sandy, mother of Jack and Ben. Jack was diagnosed with the rare blood disease Kohlmeier-Degos and spent most of his life in the ICU. The experience was traumatic. Here Sandy talks about her feeling pressure to be knowledgeable and forever present – which took a serious toll.

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