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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Caregiver self-care

Parents on the burden of chronic caregiving (with inadequate nursing). “I am so used to my circumstances that I don’t realize the stress.”

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Parents on the burden of chronic caregiving (with inadequate nursing). “I am so used to my circumstances that I don’t realize the stress.”

Parents on the burden of chronic caregiving (with inadequate nursing). “I am so used to my circumstances that I don’t realize the stress.”

Parents of a 21-year-old son with progressive medical complexity describe how accustomed they have become to chronic stress, which isn’t good. Mom notes that stress reduction for a parent is a very individual thing. For her, “All I want to do is sleep for a week.” They describe details of what they have to arrange to go on a date, or on vacation, the extra hurdles.

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