When You’re the Caregiver and a Patient
Caring for others while managing a rare disease can feel overwhelming. You want to be there for your loved ones, but your energy is limited. When both caring for someone and being the person receiving care, effective communication and a clear understanding of roles and needs are crucial.
Gentle strategies:
- Open communication is essential
- Prioritize self-care
- Let go of perfection
- Respect each other’s boundaries
- Ask for help from your support network
- Explain your condition to your kids in simple, reassuring terms
- You’re still a great caregiver. You’re showing your loved one resilience in action.
Caregiver Resources
- Caregiver Action Network
- National Institute on Aging – Caregiving
- ARCH National Respite Network
- AARP Family Caregiving
- Family Caregiver Alliance (FCA)
“Your Relationships Matter: Let’s Talk About Intimacy”