Care for the Caregiver

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Beyond Blood

As the caregiver for a child with an ongoing medical diagnosis, you may be facing new or changing responsibilities. Many of these changes can be scary, and you may question if you can do a good job. Not only are you dealing with regular childhood issues, but you also need to deal with how your child’s condition affects your family and routines. Juggling the medical needs of this child with your needs and the needs of other family members can feel overwhelming.

A recent study in the Journal of Pediatric Psychology (2013) reports that among caregivers of children with ongoing medical needs, three themes emerge. They are stress related to:

  1. Watching their child’s pain (physical or mental distress)
  2. Worry about their child’s vulnerable (fragile, at risk) state
  3. Explaining the diagnosis to others

You may have many feelings about all of this. Anger, fear, resentment, guilt, grief, loneliness or helplessness are common responses to the changes that you or your family face. These feelings do not mean that you don’t love your child; they are common, normal responses to your situation.

It is important to be aware of the signs of caregiver burnout. It may not be obvious to you, may develop over time, and may not be linked to a specific time or event that you can pinpoint.

To prevent burnout, there are important strategies to help you to cope:

  • Ask for help. Whenever possible, take a break if even for a short time. Find respite care. This may be though friends, family or a professional agency (home health, state or county assistance).
  • Set realistic goals. You will not be able to do everything in the same way that you did prior to your child’s diagnosis.
  • Learn what activities or coping strategies help to lower your stress level and do at least one of them. However, avoid increased drug or alcohol use or excessive sleep.
  • Remain in social contact. Ask your friends to help you do so.
  • Eat healthy food.
  • Exercise.
  • Get sleep; more than six hours per night is best.
  • Pay attention to your own health. See your primary care provider, dentist, etc.

Though you may be using healthy coping strategies, it is important to take note and respond to these warning signs of burnout. These may come to your attention through a friend, family member or health professional:

  • Feelings of depression or of feeling numb
  • Sense of constant fatigue
  • Decreased interest at work or in activities you used to enjoy
  • Decreased productivity at work
  • Withdrawal from social contacts/interactions
  • Rapidly changing emotions
  • Feelings of wanting to harm yourself or your child
  • Change in eating habits (more or less)
  • Change in sleeping habits (more, less, interrupted)
  • Feelings of helplessness
  • Inability to relax (always being “on”)
  • Frequent illnesses

If you identify in yourself or are alerted by someone close to you that you are experiencing signs of caregiver burnout, it is important to seek assistance. Asking for help is a mature response to a situation that is testing your ability to cope. Reach out to:

  • Family or friends who will listen without judgment
  • Your primary care provider (doctor or nurse) — the American Medical Association has developed a tool to help clinicians assess your risk for burnout (Caregiver Assessment Tool)
  • CHOP HTC nurses and social workers
  • Your place of worship
  • Caregiver support groups
  • National Hemophilia Foundation
  • Professional mental health provider

The celebrated violinist Pablo Casals once said, “The capacity to care is the thing that gives life its deepest significance and meaning.” The suggestions provided here are offered to support to you, your child and your family so you can continue over the years to thrive despite the challenges and impact of your child’s ongoing medical diagnosis.

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