Talking to Kids about Alzheimer’s

by Laura

“Can someone help us? Grandad’s stuck again!” was a common request from our kids. My Dad was the kind of grandfather that actually hid playing hide and seek with his grandchildren.  Inevitably, someone would need to help this enthusiastic 80+ year old man up from behind the couch or out from underneath a desk.  There was no way to discourage him when it came to his grandchildren.  He lived to see them laugh and marvelled at their every move.  It the kids wanted to dig for worms in the garden, he happily obliged. If they wanted to make a fort, out came the tools and they built something magnificent.  Together.

Three years ago, my father received the diagnosis of Alzheimer’s. Finally, a word to blame the disturbing changes my mother quietly lived with for years.  He refused to believe the doctors and kept his health a secret from friends and extended family. Although we respected my father’s wishes, we did not keep information from our children.  Kids can sense stress and anxiety.  We used simple language and reassured the kids with an open dialogue about changes with Grandad and our family.

I viewed the diagnosis as an opportunity for our children to see my husband and I, and our family, deal with sadness and challenges.  It was also a chance to show the kids how we care and support the people we love.

As my father’s symptoms changed, our children needed more information and I turned to a variety of resources for guidance.  The Alzheimer Society run excellent education seminars and support groups.  There are websites* with specific information about talking to young children and teens.  I also spent a lot of time at the library.

I found a children’s book “What’s happening to Grampa?”  by Maria Shriver. There are few books about Alzheimer’s geared to young children.  This is a simple story with lovely illustrations appropriate for an 8 and 10 year old.  This story provided the words I needed to explain the disease, experiences and feelings in a gentle but truthful way.

We sat on the couch, the four of us and I read.  Half way through my throat tightened and tears started flowing. The girls looked up when I paused.  I felt my husband take the book from my hands and continue where I left off.  He read the rest of the story beautifully.  After, we talked about Alzheimer’s, Grandad, sadness and the possible changes ahead.

My father used to read books and help my kids play board games.  Now they read to him and patiently talk him through simple games.  The kids draw special pictures and use photos in their art to help him remember. We visit him often in Long-term Care. We reframe our holidays, trying to celebrate in an institution and make it meaningful.  Every visit requires thoughtful discussion with our children explaining their Grandfathers words and behaviours.

Now we have to protect our kids.  They do not need to see the scary or ugly side of Alzheimer’s.  We never force them to visit or talk to him on the phone.  We reassure that Grandad loves them and that they are so special to him.  

Recently, we made a family decision to participate in the Walk for Memories January 30th 2011.   Our family relies on the Alzheimer’s Society for help, support and information.  The work they do in our community is invaluable and I am grateful.

We are raising money and walking in this fun family event to raise awareness, support vital programs and a cure.  If you ask our kids why we are participating, they will tell you one reason – Grandad.

I wish I had a plan about how we manage the last stages of this disease.  I do know we will continue to advocate and support my father. We will get through it, together.  I also know we will never forget Grandad.  We will hold and treasure our memories of a great man.

Laura is a wife and Mother to beautiful 8 and 10 year old girls.  She describes herself as an eco-advocate and moderate neat freak with a recessive frugal gene.  Laura provides light-hearted commentary for every day, practical green living on her blog the Mindful Merchant.

13 Responses to Talking to Kids about Alzheimer’s

  1. Laura, what a moving and loving tribute to your Dad, and such a thoughtful post about what your family is going through. I am sure your girls will never forget the grandfather who played with them so happily. Tears here, and hugs to you and your family.

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  3. I am struck how this disease affects young families. I had no clue. Our elderly neighbor has Alzheimers and his frail wife is caring for him. I should make more of an effort to help them. Thanks for sharing your story. It’s very touching.

  4. Thank you Finola. It feels strange to send our story “out there”.

    Thanks LC – I encourage you to reach out to your neighbours. Little kind gestures can make a HUGE difference to brighten someones day.

  5. This is such a wonderful article. You touch on something very important: developing the inter-generational communications, connection and understanding between kids & their grandparents. We are also looking for ways to help reach out to our Grandma and your article has sparked new ideas. I am going to send it along to other people

    Another thing that also inspired us was watching a documentary we got on amazon about how creative activities such as art & music help reconnect to the person who has Alzheimer’s. In the film doctors & researchers also talk about how the emotional & creative part of the brain is there all the way to the end. Also in the film you see kids & their grandparents doing drawing and games together. Wanted to share as this film “I Remember Better When I Paint” really inspired us. We read about it in an article over the holidays: http://www.miller-mccune.com/health/art-and-alzheimers-another-way-of-remembering-25996/

  6. This brought a tear to my eye. My uncle passed away from Alzheimer’s a few years ago, and it was a terrible struggle for my aunt. Fortunately, she had her big brother (my dad) there for support, right up to the end. It’s wonderful that you are able to express your emotions so openly with your kids and that you are serving as an example to them. Their grandfather will never be who he was, but you honour him by not turning away from who he is now. All the best to you and your family.

    • Hi Teresa. Your words “Their grandfather will never be who he was, but you honour him by not turning away from who he is now.” – really hit me. Such a powerful phrase. That is exactly how I (we) feel at this moment. I will share your comment and all the kind words above with my Mom and sister. Thank you.

  7. Thanks Susan, I am glad you found the post helpful. I am keen to read anything I can get my hands on when it comes to Alzheimer’s and dementia so thank you for sharing the film information and the link too. It sounds interesting. :)

  8. Laura, I got to the part of your post when you couldn’t finish reading and found tears springing to my own eyes. Such a sweet, beautiful, sad and lovely post — thank you for writing it. Both my paternal grandmother and grandfather battled Alzheimer’s and dementia, and it was awful. I’ve dreaded the possibility that it makes another appearance in our lives. :(

    Thanks for writing this, and good luck with the walk!

  9. Thank you for sharing this – I too needed to pause in my reading around the same time you did. It is good to know that there are at least some resources out there if we ever need to talk to our kids about this.

  10. Pingback: January: what you might have missed | Kids in the Capital

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