Care for caregivers

Taking care of a loved one with Dravet syndrome can be a full-time job. It requires endless time, energy, and patience. We recognize that at times it may be stressful, but you’re not alone. There are other caregivers who know exactly what you are going through, and we’ve compiled their thoughts here.

If you’re experiencing difficulties or challenges with any of the following topics, other caregivers have advice they’d like to share with you.

Self-care advice

When you care for someone with Dravet syndrome, it can be difficult to find time to take care of yourself—but having small moments just for you can make all the difference.

Here are some self-care suggestions from fellow caregivers:

  • Go out to dinner with a couple of friends
  • Take a nap to recharge
  • Drink a cup of tea
  • Bake something new
  • Watch TV or a movie before bed
  • Get your hair or nails done at a salon
  • Read a chapter of a book
  • Close your eyes and listen to your favorite song
  • Attend a sporting event
  • Check in with yourself and how you’re feeling. You can even jot your feelings down in a journal

Baking bread was really therapeutic for me. With sourdough bread, there’s no speeding things up, and there's no shortcuts. I had to learn how to slow down, take a break, and give myself some space.

—Melanie, mom of Rosie, age 3

Processing difficult emotions

There are so many complex emotions that come along with caring for a loved one with Dravet syndrome. It’s important to recognize when your emotions are taking the driver’s seat. You might be feeling overwhelmed, easily irritated, guilty, or sad.

Here is some advice from other caregivers about how to get through it:

  • Take it one day at a time: With Dravet syndrome, you may quickly realize that it is overwhelming to plan far in advance. So much is constantly changing and unpredictable, so it can be easier to take some things day by day.
  • Connect with other parents and caregivers who can relate: Meeting other caregivers in support groups can help you work through more complex emotions. It can be helpful to talk things through with someone else who truly understands your situation.
  • Be kind to yourself: If you begin to feel down on yourself, remind yourself of what an incredible caretaker you are. Try to talk to yourself the way you would talk to your best friend.

If I could have given myself any advice when Rosie was first diagnosed, it would be: remember that you're human and that you'll get through this.

—Melanie, mom of Rosie, age 3

Gathering support

Receiving support can help you do the things that are important to you and your family.

Caregivers had the following tips for finding help:

  • Don’t be afraid to ask friends and family for help: You know best what kind of support you need, and it’s okay to ask for it from those who love you.
  • Trust someone close to you to give you a break: As a caregiver, it can be difficult to even go to the grocery store if it means leaving your loved one at home. However, teaching someone close to you how to care for your loved one for brief periods can help you feel at ease and allow you to take a break.
  • Find advice: Through online or in-person support groups, such as the DSF Family Network, find other families that are going through something similar so that you can connect with people who understand your experience on a deeper level.

Having an outlet, knowing that you're not alone, and confiding about your struggles with other people that are struggling with the same thing can be helpful.

—Danitza, mom of Giovanni, age 4

Strengthening marriages and relationships

Finding special moments with your partner can require careful planning in a family with a loved one with complex needs.

Here are some tips from caregivers for strengthening your marriage or relationship while also caring for a loved one with Dravet syndrome:

  • Start planning a monthly date night to yourselves
  • Watch a show together after your child’s bedtime
  • Put your phones on silent and make time to just talk
  • Offer to help each other when one of you is taking on a lot of caregiving responsibilities
  • If you notice that your spouse is having a hard day, check in on how they are feeling

We just try to look out for each other and support each other and each other's mental health as much as possible.

—Melanie, mom of Rosie, age 3

Finding financial support

With a rare condition like Dravet syndrome, it can be difficult to know where to go for support, but there are many resources available if you know where to look.

Shine Forward caregivers had the following guidance about finding financial support:

  • The Dravet Syndrome Foundation and the Epilepsy Foundation are great starting places to find resources.
  • Connect with a care coordinator or social worker. They can email you some resources in your local area to help.
  • Look into local foundations. They typically have more availability than the larger foundations to help with medication costs and medical equipment.
  • Speak to your care team about financial resources and grants available in your local area.

There are great organizations that can help families get what they need at a reasonable price.

—Erin, mom of Mia, age 16

Discover what caregivers suggest to help navigate day-to-day life

Tips to manage daily life

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