Welcome to the C.A.R.E. Binder, a resource for families who are Caring for Adults with a Rare Epilepsy.

Planning for care for your loved one with rare epilepsy or a developmental and epileptic encephalopathy (DEE) may feel daunting at times. If you have feelings of concern or anxiety as you prepare for your loved one’s future, rest assured, this is normal. These resources were created to help you approach the task with the reassurance that while it may feel like you are on your own during this next phase of your family’s rare epilepsy journey,
you are not alone.

What the C.A.R.E. Binder addresses:

  • Transitioning your loved one from the pediatric care setting to adult care providers
  • Planning for long‐term care after age 22 and beyond as your loved one ages
  • Planning for the time when you are no longer able to provide primary caregiving for your loved one

 

And for adult siblings or others who may provide primary or  
supportive caregiving, download the  C.A.R.E. Binder Sibling 
Companion Guide.

  • This Companion Guide was developed by a team of rare epilepsy adult siblings to guide you through the C.A.R.E. Binder resource with insights and practical tips to support the task of primary caregiving.

Attention Rare Epilepsy Patient Organizations! Would you like to post our C.A.R.E. Binder resources on your organization website? Please click here to submit a request.

Care Binder
Getting started
UCB-Sibling-Companion-Guide-Cover
Download

Dear Fellow Rare Epilepsy Caregivers,

I write this letter to you as my own son, Theo, is in his final few months as a student in our local education system. The overwhelming dread that I’m faced with as we venture into the unknown may be a feeling that many of you are familiar with.

Up until now, I attended those annual IEP meetings where a ‘team’ of experts gathered to build a plan for Theo’s success. These experts included occupational, physical, speech and language, vision, orientation and mobility,

Dear Fellow Rare Epilepsy Caregivers,

I write this letter to you as my own son, Theo, is in his final few months as a student in our local education system. The overwhelming dread that I’m faced with as we venture into the unknown may be a feeling that many of you are familiar with.

Up until now, I attended those annual IEP meetings where a ‘team’ of experts gathered to build a plan for Theo’s success. These experts included occupational, physical, speech and language, vision, orientation and mobility, and adaptive physical education therapists, along with a case manager who oversaw the implementation of the goals that were set for Theo. Sometimes I hated the IEP process, but I loved that Theo had a team focused on meeting his needs. So, who will be doing all the case management now? Just me.

Yes, we live in California where Theo is a client of a Regional Center system where he has a service coordinator, but the reality of that system is that the driving force behind any service coordination will be his parents (mainly me). On paper, Theo is eligible for a day program, respite, in‐home support, and other services. However, the person who has to track down providers? ME. And the availability of such providers is scarce. The person who handles all of the other logistical stuff – durable medical equipment needs, incontinence supplies, insurance denials, medication refills – ME.

So how am I feeling about this transition to adulthood? I feel like I’m free‐falling off a cliff. I feel the familiar feelings of dread and fear that I felt when he first started having seizures in infancy. Who will care for him? Who will love him? Who will keep him safe? What if something happens to me? What if something happens to him? How much longer does he have? How can I protect his sisters from having to sacrifice everything for their brother?

As you prepare to read through this C.A.R.E. Binder, I hope you are equipped to face some of those old familiar feelings of vulnerability that may arise within you. This binder was developed to fortify you to face this brand new world.

Remembering back to those early days when this all began, all I can say to myself is “You survived and indeed, you even thrived. You will do it again.” As daunting and overwhelming as this next stage is, I now have a community of fellow caregivers who I rely on heavily. I didn’t have that twenty‐two years ago.

I may not have my IEP team anymore but I do have my fellow caregiver team. I hope we all rely on one another as we venture into this new unknown.

Always stronger together.

Jennifer Griffin (Theo’s loving Mom)