Caring for a child or adult with Dravet syndrome (DS) is challenging. It is a lot of work, mentally and physically. Our caregiver community frequently talks about feelings of isolation, depression about the diagnosis, and anxiety over what their child’s future looks like. On top of that they are overworked and exhausted in managing their child’s medical, educational, and emotional needs. They are left with little or no down time when they can relax, rest, or have fun.
I understand how it feels to try to keep up this pace day after day, hour after hour, with no real break in sight. While love is a limitless resource, energy is not. I have looked around some days, wondering how this chaos became my life. I have felt my nerves fraying and I have fought the urge to walk out the door and keep going. Those are not feelings that we as parents are comfortable with or want to admit to ourselves. We feel guilty thinking them and want to fight them off. But we should recognize that these are signs that we are in desperate need of self-care.
The extremes in your day-to-day lives as a caregiver for someone with DS can and will wear you down. It is important to remember to take care of yourself. You need to focus on eating well, moving your body, and taking time for things that bring you joy. Caregivers typically don’t get to just “turn off”, so it is important to realize when you’re overwhelmed and to establish coping mechanisms and a plan. Whatever you need to do, prioritize yourself and make it happen. Let go of the idea that good caregivers don’t need breaks. It is regular breaks that will keep you from breaking.
I realize that me telling you to take care of yourself feels like one more thing on your never-ending To Do list. But, here is the good news – it sometimes doesn’t take much to make a huge difference. Purposely doing something that brings you joy will be restorative – get in a workout, indulge in a hobby, take a nap, schedule a spa day – whatever you need. No one is going to force you to take a break, so you have give yourself permission and make yourself a priority. Only you can shape the life you want to live, even with the many challenges you face as a caregiver. I know its hard, but you will be amazed that a little bit of time to yourself can significantly change your outlook.
- Say no. With the additional needs of your child your time is extremely limited. If something adds stress to your life, say no. Say yes to those things you find fulfilling.
- Consider Counseling. It is never too early or too late to get counseling. This is a lifelong condition you will be dealing with and it is important to maintain your mental health.
- Do something that brings you joy. Give yourself permission to make time for something you enjoy. Take a class, go to a museum, meet up with a friend – just do something that makes you happy.
- Take alone time for yourself. Whether it’s just in your own home for an hour or its an entire weekend away, mark it on your calendar. Consider setting a long-term goal that forces you to make time for yourself. For instance, training for a 5K or committing to a weekly class.
A great quote from the artist Banksy is, When you get tired, learn to rest, not to quit. By making time for YOU, you will come back stronger and happier and will be a better caregiver for your child.