Over the past three blog posts (Week 1, Week 2, and Week 3), we’ve explored how the C.A.R.E. (Caring for Adults with Rare Epilepsy) Binder can support you in preparing for your loved one’s transition to adulthood and in planning for their long-term care needs.
In our final week, I’m excited to introduce a new addition to the C.A.R.E. Binder – the Sibling Companion Guide. Released earlier this year, the guide was developed by a team of adult siblings in the rare epilepsy community. It’s designed to walk siblings through the C.A.R.E. Binder, offering personal insights and practical tips to help prepare for the responsibilities of caregiving—whether that means taking on some or all aspects of a sibling’s care.
If you’re an adult sibling, you’ve likely spent your life watching your parents care for your brother or sister, and you understand just how challenging that journey can be. Some of you may already be part of your sibling’s future care plan, while others may not have had those conversations yet, or may even be avoiding them. Wherever you are in the process, this guide offers helpful information to support your current role and prepare you for whatever responsibilities may lie ahead.
The guide provides an overview of each section of the C.A.R.E. Binder, with discussion topics organized into clear categories. Each category includes detailed explanations and practical suggestions to help siblings support both daily living and long-term care planning for individuals with Dravet syndrome or another rare epilepsy.
We hope you find this guide useful. Thinking about your sibling’s long-term care needs sooner rather than later can make a big difference. If your family’s plan includes you stepping into a caregiving or supportive role, now is a great time to think about how you can begin contributing.
Ask yourself: What tasks can I take on now that would help move a future care plan forward? Are there things I can do alongside my parents that will help me feel more confident and prepared for what’s to come? Start the conversation. These discussions might be difficult, but they’re important—and being open now can lead to greater peace of mind for everyone in the future.
While the C.A.R.E. Binder and the Sibling Companion Guide are valuable tools, don’t hesitate to reach out to DSF. We’re here to support you every step of the way.
