Since I was little, I was always bothered by the apology that followed my telling someone about my Grandma having Alzheimer’s. The sympathy they gave me felt entirely unwarranted. While I understood that Alzheimer’s was changing my Grandma, I never saw it as some villainous force taking her away. She wasn’t going anywhere.
Someone with dementia does not, contrary to popular belief, become an absence; they change. They change but they still have a life to live. They grow, they morph, they remember back, they live in the moment. Someone with Alzheimer’s can live in flux, like the rest of us, albeit a different sort of flux. I don’t mean to say you don’t lose things. There is great loss. Loss of memory and relationships. There were many times I was angry at the things it was doing, upset by having to sacrifice the things I wanted to do to take care of her. The disease forces the person with it to adapt immensely; I had to adapt as well.
Alzheimer’s gave my grandmother to me more than anything else and made our relationship all the closer. It’s the reason she lived with us. Her having Alzheimer’s gave us so much more time together. I never had to be fully introduced to the disease because I don’t remember a time before it was a part of my life.
I’ve been grateful to Alzheimer’s for giving me the relationship I had, and for being such a large part of my life. I’ve found a slightly grateful/ tolerant attitude has been a more productive attitude to dementia than anger. There is still room for anger and sadness, and grief. Being a little kid around Alzheimer’s I wasn’t as surprised by all the changes. Grandma becoming different versions of herself became my normal. Children are changing and growing they’re familiar with change. I think it can be easier for them to accept their grandparents’ changes. Children and elders just happen to be changing in different directions.
I’ve understood what Alzheimer’s was doing for as long as I can remember which helped make it normal for me. This allowed me to help my parents. I was in the loop. People can tend to avoid sad or difficult subjects with kids. It helps to be honest with kids. Honest as you can, you don’t have to go into detail about plaques and tangles, or share all of your fears, but being honest about what you understand will help them understand for themselves.
Kids of all ages can help care for a person with Alzheimer’s as well. They can decorate signs showing where rooms or kitchenware are in the house, help make breakfast together, remind them to take medicine. Neither a child nor a person living with Alzheimer’s have the skills or experience to do as much as another adult, but together they can do quite a bit.
I knew early on that while my Grandma was there to take care of me; I was also there to take care of her. As far as I was concerned, we were on an even playing field. We were able to be best friends. Ironically Alzheimer’s gave us a lot. Grandma was open to playing games as many times as I’d like. She never got bored with my stories. She would tell the same fun stories over again until I could tell them back to her.
Difficult things are much less scary as you try to understand them. When you communicate with kids about what is happening to the person with Alzheimer’s you give kids the chance to adjust and make the most of the world as it is.
Things kids and teens can do with people living with Alzheimer’s:
- Play games together.
- Show them your favorite things. What do you careabout?
- Tell them your secrets.
- Learn about their life, what did they do at your age?
- Kids shows have plotlines that are easier to follow.
- Bake together, what recipes did they love growing up? What foods make you happy?
- Pot some plants.
- Draw or do crafts together.
- Listen to the music they listened to when they were young.
- Introduce them to the music and shows you like now.
- Bring your interests to them and learn about theirs Think about ways you can bring their interests to where they are now.
To learn more, visit www.beinginthemoment.org on how to deal with some common questions or feelings children might have with someone living with dementia.
By Grace V. Carter
P.S. You may also like 4 Mealtime Ideas for Someone Who Has Dementia.
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