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Anticipatory Grief in Duchenne Families
Grieving what is not yet lost is common in Duchenne. What anticipatory grief is, why it happens, how it shows up, and ways families and support can help.
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#caregivers
All articles and blog posts tagged #caregivers.
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Grandparents and the Extended Family in Duchenne
A Duchenne diagnosis affects grandparents and extended family too. How they experience it, the support they can offer, and how to navigate help and boundaries.
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Fathers and Duchenne: A Father's Experience and Role
Fathers of children with Duchenne face the diagnosis in their own way, and their needs are often overlooked. A father's experience, role, and support.
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Nighttime Care and the Caregiver's Sleep in Duchenne
Duchenne nights can be broken by repositioning, discomfort, and breathing support. How to make nights easier for the child and protect the caregiver's own sleep.
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Personal Care and Dignity as Duchenne Progresses
As Duchenne progresses, children need more help with personal care. How to support washing, dressing, and toileting while protecting privacy and dignity.
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Organizing Medical Information: A Care Binder for Duchenne Families
Organizing a child's Duchenne medical information: what to keep in a care binder, why it helps across a multidisciplinary team, and how to keep it current.
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Finding and Accepting Help: Respite Care for Duchenne Families
Respite care for Duchenne families: what respite means, the types available, how to find and fund it, and why accepting help protects the whole family.
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Balancing Work and Caregiving in a Duchenne Family
How caregiving for a child with Duchenne affects parents' employment and income, and practical ways to protect both work and the care a child needs.
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Caregiver Burnout in Duchenne Families
Caregiver burnout in Duchenne muscular dystrophy is common, predictable, and treatable. Recognizing the signs early protects the whole family.