Explaining serious illness and death to children is a responsibility most adults put off until absolutely necessary--or try to avoid altogether.
But for families of the estimated 2.5 million victims of Alzheimer`s disease, delaying the discussion is not an option. Alzheimer`s, which most often strikes the elderly, is a neurological disorder characterized by gradual memory loss, disorientation and declining ability to perform routine tasks. It causes dramatic changes over an average of six to eight years--sometimes as long as 20--before its fatal conclusion.
Victims often are cared for by family members, allowing an unusual number of children to be intimate witnesses to the deterioration of Grandma or Grandpa.
Now the story of one little girl`s life with a grandfather with Alzheimer`s disease is the subject of a small, pioneering book called
``Grandpa Doesn`t Know It`s Me`` (Human Sciences Press, $5.95 paperback, $13.95 hardcover).
Written in cooperation with the Alzheimer`s Disease and Related Disorder Association (ADRDA), this fictional story is told from the perspective of Lizzie, who watches the gradual mental decline of her strong, friendly grandfather into a dependent adult who no longer knows her but for whom she must care.
Appropriate for children 5 to 9 years old, the story attempts to answer some of the questions that puzzle kids who know an Alzheimer`s victim.
Though not a book for the average storybook shelf, ``Grandpa``
nevertheless should be a welcome aide to adults worried both about caring for an Alzheimer`s victim and about the illness` effect on younger family members. ``Grandpa`` is sure to move more than a few adults to tears. It should also remind them that the perspective of the pint-sized set is no less clear or concerned than that of their elders.
The story is, author Donna Guthrie says, ``a way of explaining to children that they are not alone. I think children want validation that what is happening to them has happened to others.``
The idea for the book occurred to Guthrie two years ago after she had worked as a volunteer with the Colorado Springs Alzheimer`s support group. Observing how the disease affects whole families, it occurred to her that adults were supporting each other but that children in those families also needed help in coping.
She wrote the story in collaboration with Dr. Miriam Aronson, educational consultant for the Chicago-based ADRDA.
``I see this as a conversation starter,`` Aronson says. It is very frightening when changes in a loved one are so severe that roles become reversed and the adult regresses to childhood, forcing a child to act more mature, she says.
Although a bare-bones story, ``Grandpa`` indicates a time frame and the kind of behavior changes to expect. It addresses secret worries such as ``Did I somehow cause this to happen?`` and ``Will Mom and Dad get this disease, too?``
As a role model, Lizzie is invariably kind and compassionate, a pleasant but perhaps not totally realistic portrait of a child in difficult
``Lizzie rises to the occasion, and that is a good role model,`` Aronson suggests. ``Sometimes kids rise to the occasion like you would not believe.`` Still, she acknowledges, the calm and compassionate storybook family is not always the norm.
``Alzheimer`s makes family relations worse,`` she says. ``It may exacerbate existing tensions,`` including those between parents and young children. When youngsters find it impossible to cope, they may withdraw or become disruptive themselves.
Parents should be alert to these changes. ``No one would disagree that this is important to get a child talking,`` she concludes.
For those who think a story might help prod the conversation, ``Grandpa Doesn`t Know It`s Me`` will be available in early May in selected Kroch`s & Brentano`s and B. Dalton bookstores. --