Caring for a loved one with an ongoing health condition can be a time-intensive and emotional journey. And while small successes and tiny triumphs can be treasured moments, daily tasks can take time away from sources of support, such as interactions with colleagues, spouses, children, friends and groups or clubs, resulting in a sense of isolation. Taking time to maintain friendships, connect with community and take care of oneself can help caregivers find strength to enjoy the milestone moments.
For family members caring for a loved one affected by Lennox-Gastaut syndrome (LGS), a rare and severe form of epilepsy, daily responsibilities can prevent parents from addressing their own physical and emotional needs. The most common features of LGS are multiple types of seizures, delays in mental and/or physical motor skills and an abnormal electroencephalography (EEG) or brain wave pattern. LGS is typically diagnosed in childhood, but the symptoms often persist into adulthood.
As families help their loved one manage seizures and other symptoms, they should also prioritize their own care. Here are some steps you can take to find strength while caring for someone else:
* Accept help from others: Make a list of responsibilities and specific tasks that you can delegate to friends and family members who are willing to help.
* Set personal wellness goals: Set a specific, attainable wellness goal and block off time throughout the week to take a walk, get extra sleep or meditate.
* Benefit from support organizations: Connect with organizations that provide services and support for others caring for somebody impacted by challenging epilepsy. These organizations may provide educational classes and training sessions that empower you in your caregiving role, or they may put you in touch with trained professionals who can help you find resources and support.
* Stay connected with friends: Don’t forget to socialize with friends and make plans that get you out of the house, whether it’s for a walk around the block, a coffee break, or a quick visit. Friends can help celebrate good times and be a sounding board during rough times. Through sites like Facebook, you can expand your circle of friends to include others who will already understand the realities of providing daily care for somebody with challenging seizures.
“I work with families every day who have kids with special needs, and I run support groups for them, but I found I was missing that support in my own life,” said Jennifer Griffin, whose son was diagnosed with LGS. “It is so important to be able to connect with other families who really understand what you’re talking about and experiencing.”
A new online community aims to support caregivers by providing a place where they can find people who understand the experience of caring for someone with a challenging seizure disorder. LGS Together is a result of collaboration among people with LGS, their families and friends, leading epilepsy and LGS patient organizations and Lundbeck. The website, LGSTogether.com, features stories, advice and knowledge from members of the community, as well as resources and information parents can use in their daily lives. On the LGS Together Facebook page, parents and families can get regular updates about the program, discover epilepsy community events and activities, share personal experiences and encourage each other.
Providing care for a loved one with epilepsy does not have to be a lonely journey. Taking time to develop a personalized support system that meets your specific needs and involving friends and family can revitalize your relationships and help you find new ways to gain personal strength.
