Sophie and I have had lots of questions about our dad and his FTD. At first we didn’t ask too many questions because we were afraid of the answers. Now we know the information can make us feel stronger, like Super Heroes, even if it isn’t easy to hear. Here are some of the questions kids usually ask when they’re first learning about Dad being sick:
What’s wrong with your dad (or mom, uncle, grandfather)?
He has a disease called FTD. It affects how his brain works and it makes him talk and act differently from before. Not many people know about FTD and you can’t always tell from how the person looks that they are sick.
Who can get FTD?
Anyone can get FTD but not very many people do. It’s rare.
How do people get FTD?
Doctors don’t know how people get it. They DO know it is not the person’s fault. The person did not do anything to get it and there’s nothing they can do to change it. When someone with FTD acts differently or talks differently they can’t help it. It’s because they are sick.
Are you afraid you’ll catch it?
Nope. It’s not like a cold. People with FTD can’t spread it to anyone else. They can still hug and kiss their kids and share ice cream. FTD is not .
Why doesn’t your dad (or mom or aunt, etc) coach soccer anymore?
FTD makes it hard for people to do many of the things they used to do. Even though they can’t do all the same things anymore, we still spend time together in different ways, like at the park or watching our favorite shows together at home.
Can we still play at your house?
Sure. You just need to know that you might see someone with FTD acting a little funny sometimes. Another grownup will be home with us so we can play and not worry about the other stuff.
Is there medicine to make it go away?
No, there is no medicine to make FTD go away. There is medicine that the doctor can give to make the person with FTD more comfortable. Doctors and scientists are working so that someday there will be medicine that makes FTD go away forever.
Will someone with FTD ever be healthy again?
No. People with FTD will not get better. They will get sicker and need more help over time. This makes everyone very sad. Everyone wishes they could help the person with FTD get better and go back to normal but we know that cannot happen.
In what ways will someone with FTD get sicker?
It’s different for everyone. Some people stop talking or have a hard time walking. Some need help in the bathroom, at the dinner table or even getting dressed. People with FTD forget how to do things that used to be really easy and might even forget other people’s names. As they get sicker they will need more and more help.
Will the person always live with you?
A lot of times, people with FTD need more help than we can give them at home. When that time comes, they may need to live in a special place where there are doctors, nurses and other people who can help with things like eating and taking baths. It’s really hard to think your mom or dad might not live with you but it can help to know that the person you love is getting the very best care.
Is the person with FTD going to die?
We know that everyone will die sometime. People with FTD will probably die sooner because of the disease but no one knows when. Some people with FTD get sick really fast. Others change very slowly over a long period of time.
Will people with FTD forget who their children are?
Sometimes. They might forget your name or act like they don’t notice you or even like you. They don’t do this on purpose. It’s because of the FTD. They may not be able to show you they love you, but in their hearts they love you and know who you are. No matter what, you can keep showing and reminding your mom or dad how much you love them. Someone with FTD can hear you and can feel your love.
Don’t kids get scared or angry about it?
Of course. It’s scary to think about someone you love being really sick and not being there for you. Sometimes the way they act or talk can be scary, too. The best thing is to talk to other family members or to really close friends about your feelings. It’s less scary when you share it with someone you’re close to.
What can you do help someone with FTD?
There are many ways to help someone who has FTD. Kids can tell the person that they love them and they can still do things with them that everyone enjoys. The kids can help out at home with chores and it really helps to know that everyone is doing their best.
These are the questions we are asked most often. Do you have a question people have asked you about FTD that we didn’t think of? You can see the questions others have sent in and the answers the people at AFTD have given. You can also send in a question of your own by clicking here.