CARING FOR THE CAREGIVER

As you live every day with your child's muscular dystrophy, you'll continue to find ways to handle the challenges it presents. Occasionally, however, even the smartest and most competent parents feel uncertain and overwhelmed. At times, you may feel your psychological and physical resources are wearing very thin.

Fortunately, there's help available for you. One writer estimates that as many as 11 million American children have chronic illnesses or disabilities. There are some 25 million caregivers in the United States -- most of them family members and most of those women. Based on the experiences of all these people, a growing supply of books, organizations and Web sites offer information to help you face the stresses of your task.

Your Physical Health

It's essential for anyone who's responsible for children to take care of his or her own health, and even more so when one or more of your children has special needs. Physical exhaustion often goes with the job of caregiving, especially when your child needs a great deal of physical assistance. Make an effort to get proper nutrition, enough rest, some exercise and some time for yourself.

"But my family needs me all the time," you say. "I don't have any time for myself." You must find a way. You're not superhuman. If you get sick, injured or exhausted, you'll no longer be able to help your family.

As your child grows, lifting him may become difficult or impossible, especially if you're a small person, or have a bad back or other physical weakness. Before you injure yourself, investigate the mechanical lifting devices on the market. You can learn safe, efficient techniques from physical and occupational therapists. Or work out a schedule in which someone stronger can do the more physically demanding tasks.

Studies show that caregivers of people with serious illnesses or disabilities are more prone to stress-related physical ailments than others their ages. Watch yourself and your spouse for chronic muscle tension, insomnia, indigestion, trembling, teeth grinding and jaw clenching, sweaty hands, changes in appetite, dizziness, stomachache, headache or back pain. These may be signs of depression, exhaustion and other illnesses that must be dealt with.

By putting some coping techniques to work, you may be able to avoid reaching the point of exhaustion and burnout. Burnout has occurred if you become numb to your loved one's needs and feelings and you just don't care. Don't let it go that far; it may be difficult or impossible to come back.

If you're a single parent, have more than one child or are holding down a job in addition to caring for your son with muscular dystrophy, it's imperative that you find ways to maintain your energy and health. Establish daily routines to minimize stress, assign willing people regular chores and use other techniques in this guide to keep from burning out.

Audrey Kron, author of Meeting the Challenge: Living With Chronic Illness, makes some good suggestions about dealing with stress--the feeling that you just can't cope any more. Before stress gets too far, she suggests, try to:

• identify a specific problem that you can solve
  
  
• accept the fact that you can't change others
  
  
• maintain realistic expectations of others
  
  
• change your attitude
  
  
• find a way to gain control
  
  
• learn time management and better organize your life
  
  
• get information you can use
  
  
• find a support system and nurture connections with others
  
  
• laugh more
  
  
• take care of your body
  
  
• spend more time on personal interests and fun

Suggestions throughout this guide show ways to do each of these things. Your local MDA office can refer you to sources of help in your community, as can members of your MDA parents' support group. Don't neglect to ask for help when you need it.

Next... Opportunity for Growth