Helping you care for your loved one with LGS

Issue 5

Managing Other Family Responsibilities

John Mytinger, MD

John Mytinger, MD, is an attending child neurologist and epileptologist at Nationwide Children’s Hospital and Assistant Professor of Clinical Pediatrics and Neurology at The Ohio State University College of Medicine. Dr. Mytinger is a paid consultant of Eisai Inc.

While caring for a person with Lennox-Gastaut syndrome (LGS) can be rewarding, it can also be stressful. The combination of frequent seizures (that can result in injury or death), cognitive impairment (the inability to remember things, learn new things, concentrate, or make simple decisions), behavioral problems, and poor sleep can create substantial anxiety and other issues for caregivers.

In one study of parents and caregivers of children with disabilities, nearly all caregivers reported negative physical and psychological impacts related to caring for a child with a serious medical condition such as LGS. Yet many parents and caregivers in the study noted that caring for a child with disabilities had a positive impact on their lives, despite these challenges.1 

Balancing the care for someone with LGS with other family responsibilities requires creating a management plan. And this plan will probably need to change as your child grows and his or her LGS changes.

Having a plan reduces the factors that create stress and allows families to prioritize other responsibilities. Here are some things to consider when developing your plan.

Caregivers who make time for themselves are better able to return to their responsibilities with renewed energy.

Share the care

Caring for a person with LGS can be a 24-hours-a-day and 7-days-a-week responsibility. So it is critical for primary caregivers to have a break. Caregivers who make time for themselves are better able to return to their responsibilities with renewed energy. People may ask how they can help. This is how!

  • Teach other family members or close friends to help care for your child, even for brief periods of time
  • Accept help when it's offered, such as grocery shopping or cleaning
  • Seek out respite care, day programs, vocational rehabilitation programs, mentorship programs, and camps for support. Two Web sites to find these resources are The Help Guide and the Easter Seals Society
  • Identify local resources through your county disability organization, school, or your regional Epilepsy Foundation. Connecting with other families who use services may also be helpful and rewarding. You can find these resources through the LGS Foundation Web site and the foundation’s Facebook page. In addition, the LGS Hope Web site has a listing of resources searchable by location

Make time for other family members

Given the anxiety over frequent seizures and behavioral problems,2 it's not surprising that other family members may feel neglected.

The stress of caring for someone with such complex needs is tiring. In romantic relationships, this may lead to separation or divorce. With other children, it can lead to behavior problems of their own or depression.

Minimizing things that cause stress, supporting each other, and participating in couples counseling may be helpful. In addition:

  • If you are feeling stressed or depressed, talk with a friend, family member, member of the clergy, or counselor
  • Actively plan "dates" with your partner or activities with your other children
  • Connect with other caregivers through the LGS Foundation. Their insights may be helpful
  • Contact the Epilepsy Information Service, an excellent resource for answering difficult questions and providing a listening ear. You can phone them at 1-800-642-0500

Make time for yourself

You may have heard people tell you that you cannot take care of someone else if you do not take care of yourself.

How true that is! While you are constantly taking care of everyone else, carve out specific time for yourself to ensure you have the energy to take care of others! Just think of what you can do, even if only for 15 minutes, to take care of yourself. A quiet shower, a walk around the block, or even just sitting alone in your car for a few minutes are all ways of taking care of yourself.

In conclusion, remember that there are other people besides your child with LGS who need and rely upon you. That includes yourself. With some planning and help from the people who love you, you can minimize the negative impacts of being a 24-hours-a-day, 7-days-a-week caregiver. You can also maximize the energy and devotion you have for caring for your loved one.

References:

  • 1. Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities: caregiver perspectives. Child Care Health Dev. 2007;33(2):180-187.
  • 2. Gallop K, Wild D, Nixon A, Verdian L, Cramer JA. Impact of Lennox-Gastaut syndrome (LGS) on health-related quality of life (HRQL) of patients and caregivers: literature review. Seizure. 2009;18(8):554-558. doi:10.1016/j.seizure.2009.06.005.

This Web site contains information relating to various medical conditions and treatment. Such information is provided for educational purposes only and is not meant to be a substitute for the advice of a physician or other healthcare professionals. You should not use this information for diagnosing a health problem or disease. In order for you to make intelligent healthcare decisions, you should always consult with a physician or other healthcare provider for your, or your loved one's, personal medical needs. All quotes included in this Web site represent the individual experience of some doctors, some patients, and their caregivers. Individual responses to treatment may vary.

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