If you have a parent, other family member, or close friend who has Alzheimer's disease or some other form of dementia, it affects not only you; it has an impact on your children, too. The time Grandma blanked on your son's name? Those overheard long, worried phone conversations with your family about your aunt?
Kids notice more than we give them credit for. They may not understand exactly what's wrong, or they might mishear "Alzheimer's" as "old timer's" disease, but they deserve being included in the situation in an age-appropriate way.
The following suggestions for filling in your kids come from Joyce Simard, a geriatric consultant in Land O' Lakes, Florida, who self-published a children's book called The Magic Tape Recorder: A Story About Growing Up and Growing Down. You can adapt these suggestions to the age of your children.
Explain Alzheimer's in ways your children can understand
Alzheimer's is a big word that may not mean much to kids, and "disease" can sound like something catching (which it isn't). So simplify: "Grandma has a memory problem." Or, "George has a disease that is sort of like if you had a tape recorder in your head, but the tape recorder is turned off. When he was younger, the tape recorder was on, so he remembers a lot of things from his past."
Put the disease in perspective for a younger child. Ask, "Are you really good at everything? Well, sometimes people aren't very good at memory." Explain that lots of people have problems when they get older -- sometimes you need glasses, sometimes it's a cane or a walker. Sometimes you can't remember. It doesn't mean you can't do anything anymore.
A teenager is ready for more details, for example that Grandma could wander away from the house and get lost. Be matter-of-fact: "This is a problem Grandma has, but don't be afraid of it."
Don't go overboard--and address common fears
Your child will let you know how much information he needs by the nature of his questions. Answer candidly. At the same time, don't volunteer more than is necessary, such as details about what late-stage Alzheimer's can be like if your parent has only just been diagnosed and shows mild to moderate signs of impairment.
If a grandparent forgets your child's name, calls him by the wrong name, or confuses him with the childhood you, your child might misinterpret this mistake as evidence that Grandma doesn't love him any more. Explain that it's not that she doesn't love him; it's that she can't remember things that just happened, or even the names of people close to her. Young grandchildren's names, because they're more recently acquired memories, are often more quickly or easily forgotten than those of more lifelong acquaintances.
Another fear: Even if your child doesn't ask, let him know he can't "catch" Grandma's problem from being nea r her; it has nothing to do with germs.
If your child develops a sudden disinclination to visit grandparents, it may be that the memory problems are upsetting or embarrassing. Kids aren't used to adults repeating themselves over and over (at least, when it's not orders and requests issued by their parents!).
And don't assume the worst if your child shows reluctance about visiting grandparents. It may not be the Alzheimer's that's bothering her at all; most kids get grumpy about visiting relatives sometimes.
Keep interactions as normal as possible
There's no need to keep your child away from your parent out of fear that one or the other might say or do the wrong thing. Being mentally sick isn't like being physically ill and having to lie in bed. Continue usual interactions so that your child sees that Grandma hasn't suddenly changed or grown infirm, especially in the disease's early stage.
Later in the disease process, it can be upsetting for a child to see a greatly altered grandparent. When your parent no longer recognizes or shows interest in your children, it's not in anyone's interest to force the relationship. At that point, it's best to take your cues from the behavior of each.
Direct easy activities
While your parent is still interested in your children, however, show them that they can still have fun together. If your parent doesn't have any dietary restrictions or issues, food is a great equalizer. Examples of food-related fun: Going out for ice cream, having a tea party, making and eating slice-and-bake cookies (under your supervision).
Other activities that can be rewarding include playing catch with a soft ball; playing a fairly easy card game from the grandparent's era, such as Old Maid or Go Fish; taking a walk in the yard; picking and arranging flowers; looking through old picture albums together (a special favorite of both kids and grandparents).
Young kids love to "help" around the house. Say, "Let's see how we can be helpers" and get both grandparent and grandchild involved in an easy chore such as dusting, dryi ng dishes, tidying a garage, or sweeping leaves.
"When children are around, something magical happens with the elderly," says Simard. Your parent may be calmer and in a better mood than when alone with you. Even infants and toddlers playing close by can lift the mood of someone struggling with the changes of Alzheimer's. "It really doesn't take a lot of language," Simard says. "They communicate in their own way. It's all about making human connections."
It's not advisable, however, to leave your parent alone with your young child. You don't have to make a big issue of it, but because Alzheimer's can make your parent's behavior unpredictable or her judgment unsound, it's almost always best to have another adult around.