Having Conversations

Some caregivers are fortunate to have supportive family members nearby to help them care for their loved one with rare epilepsy and their siblings (if any). Some caregivers may have supportive family members, but they live far away so may not be quite as available to provide support. Some families may have family near or far, but their family isn’t supportive. Some caregivers may be flying solo with a single primary caregiver and no family support at all. No matter your particular family situation, it’s still important to have conversations regarding the long-term and crisis planning for your loved one with rare epilepsy.

As with other future planning, it’s best to think about options for your loved one when your family is not in crisis. We discuss putting plans in place in the Crisis Planning Guide in the C.A.R.E. Binder. Once you have a plan, how do you talk about that plan with others in your life?

Consider starting by making a list of those you want to have conversations with about your loved one with rare epilepsy’s future care. As you conclude your discussions, check them off the list so you have record of who you need to speak with and who you still need to reach out to.

Download the Crisis Planning Guide

Download the Extended Family Discussion Form

What about those outside your extended family and outside your Lifelong Support Network? It’s important to have conversations with anyone who will be a part of the future care of your child with rare epilepsy and just as important to have conversations with those who may not provide direct care but may be in your Lifelong Support Network or who may be in your general circle of support.

A good place to start is by having regular conversations about your loved one with rare epilepsy with others in your life. Share how you and your family are doing—what was something funny your child did today? What made them laugh? People who don’t live with rare epilepsy don’t understand your life. Only those that you are very close with can have an appreciation for the challenges your family faces every day. Having regular conversations with others helps them better understand and may also help them “normalize” rare epilepsy. The more you can talk about your loved one’s rare epilepsy and share real-life family stories, the more comfortable people in your support circle will feel. And the better you will feel, too.

Download Developing a Lifelong Support Network

You may feel like you’re just getting the hang of the pediatric care system when you have to start thinking about the medical transition from the pediatric care team to an adult care team for your loved one with rare epilepsy. It may seem like a daunting task—and it is, but you have thoughtfully provided care for your loved one for many years and have overcome many obstacles and you can also be successful with this new challenge.

We hope using this guide can provide you with some of the support you’ll need. Throughout this C.A.R.E. Binder, we discuss many different aspects of preparing for the long-term care of your child as they age into adulthood. While it would make sense for the healthcare system to recognize the needs of those with severe disease as they age out of the pediatric system, the reality is that you, as the primary caregiver of your loved one with rare epilepsy, will need to drive the process. You will also likely need to drive the communications and conversation with your child’s medical care team—on both sides of the medical transition process, pediatric and adult.

Below you’ll find some helpful tips to initiate the process and get the conversation going. You’ll also find suggestions on timing—it’s just as important to know what to discuss as it is when to discuss. And as with the other areas we’ve focused on, planning and preparation are key. Finding time to work on your plans when your family is not in crisis can be helpful; however, even when in crisis, there are sometimes decisions that must be made to continue the care you’ve so thoughtfully provided throughout your child’s journey.

Timing—when is the best time to start the conversation with your pediatric care team? You can start conversations around age 13 or even earlier if that is what works for you. It depends on your family’s unique situation. Begin by having discussions with your child’s primary care physician and neurologist or epileptologist on what to expect and how they can help support the medical transition process. Confirm when your child will age out of their practices, as well as the current medical institution(s) your child is treated at, well ahead of time to determine the timeline you need to follow.

Download the HCP Conversation Guide Checklist

The next conversations can be around connecting your current care team with the new care team to ensure your new adult care team has all the information and history they need to continue the best possible care for your loved one with rare epilepsy. Consider starting with your child’s primary care provider and neurologist or epileptologist. Once you have this task completed, depending on your experience thus far, you may choose to alter the list of questions identified above or adjust the process to accommodate the needs of your loved one with rare epilepsy. Ask your child’s adult neurologist or epileptologist and adult primary care provider, as well as your child’s other medical care team, to provide you with recommendations for the rest of the specialists and others who care for your child. Make note of the information using the referral form below. 

Download the Adult Care Team Provider Referral Form

Your family interacts with many different people within your community. Some may be close to your family, helping to provide care to your loved one with rare epilepsy or to your other children, if any. Some may be a part of your Lifelong Support Network. Some may only be in your life temporarily, such as school personnel or others in your community. They may or may not be considered part of your support circle, but you and your child with rare epilepsy may have somewhat regular interactions with them.

For this specific group of people, it may be helpful to provide a little background information on what rare epilepsy is and how they can help. Most people want to help, but they don’t know how. If your loved one with a rare epilepsy has siblings, it will be important for you to first consider completing and sharing the My Family Is Living With a Rare Epilepsy form that can be found on the next page. This form will also contain important information on who to contact in case of emergency.

Another very helpful document to share is the Summary Introduction to My Loved One that provides important information about your loved one with a rare epilepsy.

Once you share these resources, follow up by offering to answer any questions they may have. Assure them that no question is silly or stupid. And don’t forget to express your appreciation for the interest they have taken in your child (or children) and for the care they provide.

Download the fillable Checklist

Download My Family Is Living With a Rare Epilepsy

Download Summary Introduction to My Loved One