Helping Children Understand Alzheimer's Disease

Q: My mom has Alzheimer's, and it has changed her personality. She will be spending some time this summer with us, and my children ages 6 and 10, remember her only as "grandma who was fun, smart, and did fun things with us." What should I tell them?

A: This question reminds of a time I visited a nursing home to offer Reiki to some of the residents. A family was leaving, and the little girl asked her mom "why did grandma keep asking me my name when she knows who I am, and why did I have trouble understanding her?". It is so difficult to watch a person you love lose their abilities to a neurological disease, and so confusing for children to understand this.

Young children need to know that you are also seeing the same changes in grandma that they do, that it concerns you, and that you are doing whatever you can to help. Don't be surprised if your children ask if their grandma is going to die. While you want to protect them and say that no, grandma is not going to die, you might want to think carefully about using this opportunity to have a realistic discussion about grandma's prognosis. If you do this with love and attention to their concerns, it sends your children a much better message than a patronizing response intended to stop an uncomfortable discussion. At an age-appropriate level, make sure your children understand how grandma's condition limits her ability to do things now. Let your children know that they may need to remind grandma to do things over and over, because it is the nature of the disease.

Preschool children probably won't focus on the illness, but they will ask about what they see, and worry about what grandma is doing that they don't see other people doing. For example, if they ask why grandma is walking outside with her pajamas and bathrobe on, simply answer that grandma is confused because she has a disease called Alzheimer's. It means that her brain doesn't work very well any more.

School aged children will ask more specific questions that may make you feel uncomfortable. Remember that seeing grandma act this way will bring up fears about their own safety. They will want answers, but also reassurance. If you don't know the answers, tell them so, and offer to get more information. It won't hurt them to give them the information they ask for. It could be as simple as saying that grandma's brain that controls her memory is not working as well as it used to because Alzheimer's has damaged it. Or it could be more technical, depending on your child. Information that creates a sense of understanding reduces some of the powerlessness we all feel when dealing with Alzheimer's.

Teenagers are likely to already a good idea about what is going on. And it's all right to express your own worry and concerns, and feelings, which will most likely bring you closer together. Keep in mind that at this age, when teens have questions they don't always go to their parents for the answers, but will turn to their friends and get misinformation. You need to find out what your teen knows, and if necessary, redirect them.

So talk about it, but more importantly be sure to listen. Children want to be heard. Let your children do most of the talking. Listen to their fears, concerns, opinions and feelings. You won't have all the answers, and certainly no solutions, but that's all right. Acknowledging and and not disregarding their feeling is a great help by itself.

Best wishes to you and your family, and let me know how you are doing.

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