The Evolving Conversation: Talking About Alzheimer's With Our Children

As the years have passed our conversations with our children have changed. Their grandmother was diagnosed with Alzheimer's disease several years ago. We have all been living together or in very close proximity for most of those years, and they have had a front row seat to the disease. They know how it has affected their beloved G'ma and it changed all of us.

Initially, we spoke with them factually and in an informative way. We talked about how G'ma was changing and we would all be okay. We let them know that we were committed to caring for their grandmother, my mother-in-law, and not much would change.

We would take her to their games, recitals, concerts, film premieres, plays, and other fun events. Their teen years were full of fun as we shared in family times.

The kids are growing up and so are our conversations

The kids have graduated from college. One lives at home and the other is close by. Their lives have changed as they are thinking about careers and their own significant others. G'ma has changed progressively as the disease has taken its toll.

Our children have seen the changes and our conversations have changed as well. We talk very little about the facts of the disease now. We talk about the impact is has on us and how we may support each other. We all know what is coming, but that is not the focus of our conversations anymore.

The conversations have been reframed in terms of how we can all enjoy each other and bring G'ma in on it. We look for ways to include her.

We talk about our own fears and hurts, and we are open about how we help others manage this difficult time. We talk about relieving each others burdens, and walking through this together. It's not perfect, but it helps each of deal with the pain of losing her a little each day. It softens the blow.

Keeping their relationship with G'ma at the center

Holidays and celebrations are very inclusive and G'ma is in the middle of it, especially when it comes to receiving thoughtful gifts from her grandchildren.

Recently, the kids got her a stuffed teddy bear that was chosen specifically by my mother-in-law at a well know specialty store in a local mall. She loves "Sweetie" and hugs it and talks to it lovingly. G'ma also received a fabric book with buttons, laces, pockets, and other items designed to enhance motor skills and senses.

From observers to co-caregivers

My children have gone from interested, yet passive observers to full fledged co-caregivers. I believe this is because we intentionally brought them into the conversation.

We helped them understand they could love their grandma by joining us in her care. We gave them opportunities gradually and supported them in their caregiving efforts. We talked about the privilege of legacy by giving to past generations who had given to us. We encouraged them to be creative in the way they expressed their care and love. We allowed them to see that our struggles were not fixed or permanent and could be lessened through teamwork and their participation.

We reframed the conversation with our children as they matured from the teen years into adulthood, and they have responded in ways that continues to lift everyone up. This has made all the difference. How can you talk to your children or grandchildren about Alzheimer's in a way that brings them from observers to caregiving participants?