How Can I Help?
It’s weird that Sophie and I can do things that our Dad can’t do anymore. We keep learning new things, but Dad can’t keep up. FTD is really hard on all of us. We can’t change FTD, even though we wish we could. There are lots of little things we can do that help in big ways. Plus, when we do something for Mom or Dad it helps us feel better. It’s one of our new Super Powers!
When a parent gets sick it is hard on every member of the family. With so much going on many kids want to DO something to help but may not know what to do. Here are some ideas for things you can do to help at home:
Even though the person with FTD may have trouble showing you how they feel, they love you very much. FTD changes how a person thinks and how they act but will never change the love they have for you.
One of the best ways to help is to show someone who is sick how much you love them. A person with FTD may not say thank you or react the way they used to when you do something nice but you can be sure they still feel your kindness. Find some quiet time to hold hands, sit beside them, or gently help them. Tell them you love them. It may seem they don’t understand but they DO like to hear it.
Do something together
Ask an adult friend or relative about what things the person with FTD enjoys doing. Pick a few things that you can do with them. It might be as simple as watching a TV show together, singing songs with them or having them sit with you while you color together. You can even play a simple game with them.
Many people with FTD start to have trouble finding words and talking. Make a word book with labeled pictures of objects you use every day or things the person likes. Keep the book handy and have the person point to the pictures when they need help to find the right word.
Don’t worry if it takes longer to tell you something or if they don’t follow the rules of a game or color outside the lines. Doing something together is a great way to show your love and help the person stay active. Plus, you will be making memories that will stay with you for your whole life.
Stay strong and healthy
You are very important! One great way you can help is by taking extra good care of yourself. Work hard at school; have fun with your friends; get plenty of exercise; and eat healthy food to help keep you strong.
Ask questions about FTD and talk about your feelings whenever you need to. If you’re not comfortable talking about it at home, your family may have adult family friends, aunts/uncles or other grown-ups – like teachers, school counselors, your pastor/priest/rabbi or even your family doctor – who could be trusted to listen and help.
Keep doing things that are important for you. It is okay for you to have fun and be happy.
In most families kids already have to pitch in around the house to help set the table, pick-up their toys, or watch a younger brother or sister. Your parent with FTD may no longer be able to act like a parent. This usually means everyone needs to work a little harder to make up for the things the person who is sick can no longer do.
Talk with the others at home about what you can do to help out more around the house. Together you can make a list of what needs to be done. Maybe you can do a few of them! Can you keep your room clean or help more with the dishes or out in the yard? Can you keep the TV a little lower, or play noisy games in a different room? No matter what it is, the little things you do can be a BIG help to the rest of the family.
This may seem like a strange way to help, but it’s not! Some of the things that people do when they have FTD may make you laugh. You would never laugh at the person for being sick, but some situations may seem silly. [Sophie and Connor’s dad wore his pajamas to an ice cream shop!] FTD and the changes it causes are not at all funny. If something silly does happen though, laughing about it can help everyone.
FTD is called a “rare disease.” This means that not very many people in the world have FTD. There are lots of people who don’t even know what it is. Teaching people about FTD is an important way to help your family and other families, too.
Even kids your age can teach others about FTD. Learn all you can about it from this website. When you’re ready, talk with your healthy parent about ways you can tell others about FTD. Click here to read about some of the ways other kids are teaching others.
To be honest, some of the things we do to help out around the house are totally boring but I have to say it feels good to know we are helping- even when it isn’t fun. One of the cool Super Powers we have is knowing that the little things we do can pack a powerful punch. Pump up your family by finding little things YOU can do to be a Super Hero at home!