Caregiver Appreciation Day is observed each year on the 3rd Friday in February. This year, on February 18th, we honor those who give endlessly of their time and energy to help their loved ones live better lives with Dravet syndrome, and we would like to draw attention to all that they do and sacrifice. We see you and we know this isn’t an easy journey.
There are many unknowns when caring for someone with Dravet syndrome and parents often feel overwhelmed and exhausted from the caregiving responsibilities. Stress may come from a variety of sources that the caregiver may be unable to control, including changes in family roles and responsibilities, not being able to work or do certain activities, changes in friends and family relationships, and financial strain due to healthcare costs. Care for a loved one directly impacts your time and energy, and it is not uncommon for a caregiver\’s self-care to fall away. But, to be a good caregiver, you have to be good to yourself.
While this stress is considerable, these tips might ease the strain:
- Allow yourself to ask for and accept help. You can’t do it all. Make a list of the ways other people could help lighten your load. If people ask if they can help, be ready with an answer. And don’t be afraid to ask relatives and friends to help.
- Get emotional support. Seek out a counselor and/or connect with a support group. It will help ease your feelings of isolation, loneliness, anger, and frustration, as well as provide advice and encouragement.
- Make your own health a priority. Be kind to yourself. Get plenty of rest, move your body, and eat balanced meals.
- Take time for yourself. You need a break from the demands of caregiving. Seek out respite care or another caregiver to get small breaks from your constant caregiving. Even if you are not comfortable with leaving the house at first, allow someone else to play with and care for your child while you do something you enjoy.
- Schedule some time for yourself. Do something you enjoy. Visit with friends. Go for a walk. Even small changes to your routine can help you to recharge.
- Keep a journal or notebook. Are there things you can plan and write down to help you free up emotional energy? Often you can relax more fully when thoughts are out of your brain and on paper instead.
- Make time for mindfulness. Try to fit 10-15 minutes into your schedule to meditate, do deep breathing exercises, or stretch. Our bodies respond to stress with a fight or flight reaction, and mindfulness exercises can help to turn off those stress reactions.
- Go easy on yourself. You cannot do everything for everyone. You are doing the best you can under difficult circumstances and it is okay to set limits to avoid burnout or additional stress.