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Emotionally
The journey of caring for a child with LGS can cause feelings of anxiety. It’s important to recognize when your emotions are taking the driver’s seat. You might be feeling overwhelmed, easily irritated, or sad. It’s important to ask for help.
Here are some tips from other caregivers of loved ones living with LGS:
- Explore therapy—having a safe place to talk about your experiences could positively impact your mental well-being
- Make a list—this will help you prioritize and plan ahead for your day
- Be flexible—it’s okay to not always stick to your schedule. You may feel less stressed when something unexpected occurs
Liam, 4, with his mom and brother
Physically
Some caregivers may also notice some physical effects of caring for a loved one with LGS, such as loss of sleep and body pain.
Below are some ways that fellow caregivers approached these challenges:
- When possible, go to the gym or do a quick workout at home
- Take shifts with other trusted caregivers in your family to relieve some of the strain on your body
- Try to prepare meals ahead of time so there's less to do at the time of serving
Socially
When caring for a child with LGS, social interactions can sometimes be placed on the back burner. If you’re losing interest in activities that you once enjoyed, it may be time to seek support or get professional help.
Some ideas that have worked for other caregivers:
- Ask for help. Sometimes this might come from a family member, and other times it may mean hiring a trusted babysitter. Receiving support can help you do the things that are important to you
- Remember, you are more than just a caregiver. By recognizing this, you can give yourself grace and know you deserve a break sometimes
- Create a calendar with events, such as going to the gym, to maintain interest in your own hobbies
A few minutes to spare for self-care
Even if you have just a few minutes, our caregivers have found, you can still do something to ground yourself, like:
- Find a peaceful spot in your house and enjoy a little "me-time"
- Go outside—take a walk or just simply get some sunshine and fresh air
- Read a few pages of a book
More advice and tips from caregivers
Our caregivers offer the following advice they've gained from personal experiences:
- Find your community—get involved with LGS groups on social media
- Don't be afraid to share your story—you don't know what support you may discover or who you might be able to help
- Take it one day at a time
- Voice record your loved one's doctor appointments so you can remember what was discussed
- You may find it helpful to write out your loved one's medicine schedule on your refrigerator for all to see, just in case
- Some families prefer setting out medicines in the morning, others may do it before bed; find what works best for you