Caring for the Caregiver

Caring for a family member can be a tremendously stressful responsibility. When it’s your child, it can be both physically and mentally draining, as well, as you must come to terms with watching your child face health obstacles you never imagined he or she would ever have to face. There are a number of ways caregivers can re-charge themselves to stay strong and helpful resources available that can offer both information and emotional support to parents and other designated caregivers.

• Reach out to others sharing similar experiences.
Caregivers are given the difficult task of staying positive and hopeful while handling day-to-day care giving responsibilities which aren’t always so encouraging sometimes. Where possible, reach out to others in the family for help in care planning and care giving. Also, you can seek help through other communities – local support groups at your nearest healthcare facility and faith-facilitated groups to avoid feeling isolated and disconnected.

• Make time for your health – physical, mental and spiritual.
The level of stress that many caregivers experience may lead to chronic illness or even depression. While it can be difficult to make time for yourself as a caregiver, it may mean the difference of being able to physically care for your child or not. Schedule time for regular exercise or meditation to replenish, whether it’s a daily appointment with yourself for a walk in the neighborhood, time at the gym or yoga. Many caregivers also experience lack of sleep or good nutrition. Your strength and effectiveness as a caregiver depends upon your good health, so make an unwavering contract with yourself to get the proper number of meals and hours’ sleep needed to feel fresh and focused. Remember the analogy of airlines’ safety procedures: always put your own oxygen mask on first before turning to assist others.

• Explore online support resources.
There are several valuable web sites designed specifically to provide support to caregivers including the National Family Caregivers Association’s (NFCA) website ( and the Family Caregiver Alliance site ( This NFCA link offers a comprehensive list of various agencies and websites, some specific to the kind of caregiver help being provided (such as for children or for the elderly). (

• Stay involved in your own community.
It can be helpful to caregivers to get involved in their own neighborhoods, contributing time to other people and causes, sharing their family’s story to provide awareness for EB to other families and experiencing the immediate support and feedback from others in their community while still giving back. Seeing direct results of your efforts can help you stay motivated on your own mission at home to care for your child and help extend your support network beyond your usual family and friend circles.

• Don’t delay in seeking professional help if you need it.
If you’re experiencing any health issues, it’s important to schedule an appointment for yourself with a doctor right away. Ignoring symptoms of potential medical issues or depression may only make things more difficult later if you’re unable to care for your child. Give yourself the proper attention you need and deserve for your own safety and well-being and so you can continue to provide the loving care and support your child needs.

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