6FTD Changes Over Time

Mom says things started to change a few years ago but we didn’t know what was happening. Now we know things are getting harder for Dad because of FTD. At first he said things that didn’t make sense. Now he hardly talks at all. Sometimes now he forgets how to be safe when we’re out and Mom makes sure someone is with him. Grandma and Grandpa come over to help almost every day. Mom says things will keep changing with Dad as the FTD keeps changing his brain. It stinks for all of us; but we know he can’t help it.

Kids often know there is trouble even before the doctor says it’s FTD. Things you could once count on now start to change – maybe your mom doesn’t go to your school activities as much as she used to or your dad doesn’t tuck you into bed anymore. Maybe there are fewer fun times that you have together as a family.

FTD changes the way a person thinks and acts. The problems start slowly and may not be noticed at first. Little by little the person has more  that make it harder for them to do everyday things. The doctors call FTD a  , which means it gets worse over time. As the disease gets worse, the person will need more help from others. You may notice differences between the person now and how your remember them from pictures when you were younger.

Someone with FTD may not be able to say or show their feelings in the right way because of FTD. It is important to remember that their responses are not your fault. The disease changes how they act and talk, but it does not change their love for you.

What happens next?

Kids often want to know what changes to expect next but with FTD this is very hard for even the best doctors to say. FTD is different for every person. Also, things can change from one day to the next. No one can say exactly what part of the brain will stop working next or what activity will become hard. But in general, doctors talk about the symptoms of FTD going from the early stage, to the middle stage and then to the late stage.

Early stage

In the early stage the person with FTD is probably still able to work, drive, and take care of things at home. People outside the family, who don’t see things every day like the family does, may be surprised and may not think the person has a disease at all.

Someone in the early stage does not feel sick and may not know there is anything wrong with them. You may notice that things seem different from before. Some days may seem mostly normal while on other days it can be especially hard. This can be very confusing. Talking to your healthy parent can help make sense of all the things that are changing.

Middle stage

In the middle stage it is common for people with FTD to start to do things that seem strange, especially for grown-ups. They may not go to work anymore. They may have trouble talking clearly or use the wrong words for things. They may watch TV for hours or not talk at all when you see them. They may tell the same story over and over or eat lots of the same food every day. They may need reminders to take a shower or change their clothes and they may need help to finish a job.

Most people with FTD will stop driving because it becomes harder to pay attention to too many things at once. It may not be safe for them to go out on their own or be home alone. That is because they cannot make good decisions. You may notice that the person is sad, angry, moody, or nervous. They may not ask how your day was or notice how you feel. They may not be able to comfort you when you are sad. A mom or dad with FTD might do or say things that make you really upset. They may not seem to care that you are crying, or that they may play too rough.

All these things are happening because they are sick. They don’t do these things on purpose; they can’t help it. Be sure to ask for help anytime you are scared or upset by something the person does or says.

Late stage

As FTD damages the brain more and more, even really simple things become hard. The person with FTD may need help eating with a fork and knife or might need food that is soft and easy to swallow. They may forget how to use the bathroom. Some people in this stage still walk and are active but others may need a wheelchair to get around.

It is normal at this stage for someone with FTD to forget even very important things like who their family and friends are or what your name is.  They may forget how to talk. They may get upset that they don’t know the people around them or they may stop acting like they care about anything at all.

They will no longer be like the person who took care of you. At this stage, they may start acting more like a child and will need someone to take care of them. Some families ask friends and relatives to come to your house to help. Others get help from people who are paid to take care of people who are sick and come to your house.

Over time, the person with FTD needs so much help that it may become too hard to take care of them at home. They may be safer and more comfortable living in a special place, which may be called an assisted living facility or a nursing home. At those places, there are doctors and nurses who can take care of the person with FTD 24-hours a day. Learn more about  by clicking here.

What you can do

Not knowing what to expect can be really frustrating. Whether you feel angry or sad, confused, embarrassed or scared, talk to your healthy parent. They can help you find good ways to deal with your feelings. There are other kids who have someone they love who is sick with FTD just like YOU do. They have written stories and drawn pictures about what it’s like for them so you don’t feel alone. Check it out!

3Dad is a pretty big guy and when he started to fuss about taking a shower Mom needed help. Now a woman comes from an agency three times a week to help. Connor and I don’t like having her in our house. But she does know how to help Dad and having her here let’s Mom spend a little time with us.

Changes in the body, behavior or mood that can be seen and are a sign of illness or injury 
A disease that gets worse, grows or spreads over time. There are treatments for some progressive diseases, but some cannot be stopped or cured.
A place where people with various types of disabilities live. Supervision and assistance help ensure their health, safety and well-being.