Telling the People You Raised

You have spent their whole lives protecting them. Now you have news that you cannot make better. Here is how people have found the words, for grown children and for small ones.

Should I tell my children at all?

In almost every case, yes. They usually know something is wrong already, and not knowing why is harder than knowing.

People delay this conversation more than any other. You may want to protect them, or wait until you understand it better yourself, or avoid seeing their faces when they hear it.

One woman in her fifties, newly diagnosed, wrote that she was not mostly afraid for herself. She was afraid for her husband and her daughter. That fear is common, and it is often what makes the conversation feel impossible. But children of every age tend to notice changes: a repeated question, a missed birthday, a short temper. Without an explanation, they fill the gap with their own guesses, and the guesses are often worse.

How do I tell my adult children?

Plainly, in person if you can, with some time afterward to talk. Then give them something to do.

• Say the word. "The doctor says I have Alzheimer's disease," or "early-stage dementia." Euphemisms leave people unsure what they have heard.
• Say what it means for now. "Day to day, I'm still mostly me. Some things are harder, and that will slowly change."
• Say what you want. "I want to keep living my life. I want to make some decisions while I can, and I'd like your help with a few of them."
• Let them react. Some cry, some go quiet, some jump straight to fixing things. All of those are normal. You do not have to manage their feelings in the moment.
• Follow up. A second conversation a week later, once it has sunk in, often goes deeper than the first.

Adult children often ask how they can help. Having a short list ready gives them somewhere to put the worry: coming to an appointment, helping set up autopay, being your trusted contact on accounts, visiting on a regular day.

If you have more than one adult child, consider telling them together, or at least on the same day, so no one hears it secondhand.

How do I tell my grandchildren or young children?

Short, true and simple, in words they understand, and expect to say it more than once.

The Alzheimer's Association's guidance for talking to children comes down to a few points:

• Be honest and use words they understand. "Grandpa has an illness in his brain called Alzheimer's. It makes it harder for him to remember things."
• Reassure them about what they might fear. It is not contagious; they cannot catch it. It is not anyone's fault, including theirs.
• Explain the changes they will see. "Sometimes I might forget your name for a second or ask the same question twice. That's the illness, not because I don't love you."
• Answer questions as they come, including the same ones again later. Children often process in small pieces.
• Give them a role. Reading together, listening to music, helping with a recipe.

Teenagers may want more detail and may be more aware of what lies ahead. Let them ask. Some will want to read about it; others will avoid the subject for a while. Both are normal.

How will they react, and what should I watch for?

Many different ways, and not always in words. Worry in children often shows up as behavior.

The Alzheimer's Association notes that children may feel sad, confused, afraid, guilty or embarrassed, and may show it indirectly: withdrawing, stomachaches, slipping grades, more arguments. Teenagers may pull away, or may feel embarrassed in front of friends. Grown children may become overprotective, or may keep their distance because they do not know what to say.

None of these mean the relationship is broken. Making regular, ordinary time together, without a big conversation every time, usually helps more than a single perfect talk.

How do I stay close to them as things change?

Build something into your time together that does not depend on memory. That part can last a long time.

• A shared activity. Cooking a family recipe, gardening, fishing, a puzzle, a card game, music.
• Recording things for them. Your stories, your voice reading a book, a recipe in your handwriting. Some people make a box of letters for future birthdays.
• A regular day. Sunday calls, a Thursday visit. Rhythm is easier to keep than plans.
• Honest updates. As things change, tell them, so they are not surprised.