Handbook for Mortals : The dying of children : Fatal chronic illnesses with intact intellect

There is a lot of living to be done after being diagnosed with a chronic and ultimately fatal illness. First and foremost, your child is a child. Picture of child in a hospital with a woman He needs to do kid things - play, draw, be with friends, be disciplined, have responsibilities, go to school. Sometimes these activities, though the most important to your child, get lost in the intense effort to treat medical problems. Wherever possible, squeeze these activities in.

One 16-year-old wanted desperately to graduate from high school. A call to the school by the hospice team resulted in a cap and gown ceremony and graduation party. This same girl wanted to ride on a motorcycle, but needed good pain control to do it. She again was able to accomplish this very person-al goal because she was allowed to express it, knew she had a limited lifespan, and had excellent, child-centered caregivers and parents who respected her and her wishes.

Your family has all kinds of needs. Ignoring these needs for the sake of a child who will be ill for a long time can actually harm him. For instance, not taking time to enjoy your marriage can damage the marriage, and the child may lose one of his parents, his pillars of strength. Well siblings need your attention, too. They need to feel loved and valued. Some regularly scheduled, dedicated time with each child fosters goodwill toward the ill child and prevents healthy children from worrying that they no longer matter. Instead of insulating the well children from the ill child, let them help care for their sick sibling. This experience fosters a sense of confidence and value that lasts into adulthood.

At some point, a chronically ill, dying child and the family often benefit from hospice. Be sure to ask about hospice and investigate it long before you need it. If it is a welcoming, life-affirming, knowledgeable program, you may want to use it long before it is clear that death is at hand. Prepare for death even as you hope for life.

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Handbook for Mortals book cover Copyright © 1999, 2006 by Joanne Lynn. This extract from the Handbook for Mortals by Joanne Lynn, M.D. and Joan Harrold, M.D. is used with permission. To learn more about improving care at the end of life visit the main web site for Americans for Better Care of the Dying.
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