Do you have someone in your family who has something called dementia? Lots of people know someone who has this problem.
If your relative has dementia, they may act or talk funny sometimes. They may have trouble remembering things, no matter how hard they try. They might have trouble knowing where they are. They might choose funny clothes to wear, or lose things a lot. Sometimes they may not remember who other people are. They might even forget YOUR name!
"Dementia" is a big word that means that when people get older, some people start to have a problem with their brains. This problem means that they can't remember things and they get confused. It's like when you first wake up in the morning and you're not sure where you are or what day it is. People with dementia might feel that way a lot of the time.
It's nobody's fault that some older people get this problem. The doctors don't know how to fix it yet, but they are working on it. It may take a long time to find a way to fix it.
Dementia doesn't happen to children, and it's not catching - nobody can get it from someone else. It only happens to some people, and it only happens when they get much much older.
Sometimes the way your family member acts may make you feel sad or frightened. Dementia can be sad and frightening. Grownups have those feelings about it too. Nobody wants it to happen, but sometimes it does.
Sometimes it can really help to talk to other people about how you feel when your relative has dementia. Be sure to ask all the questions you are thinking about. You can talk to your parents or teachers or special friends about it. If a grownup doesn't know the answers you need, ask them to help you find out.
Later on this page there are some stories from other children like you who have a family member with dementia. There are lots of children who feel the way you do. If you would like to share your story with other children, you can send to me and I will post it here. Ask a parent to help you send it.
Even though your relative might seem to have changed a lot, they still have feelings just like you do! They will probably still enjoy spending time with people they like, getting lots of hugs, going fun places. And just like anyone else, they like to get presents. Here's one you can make on your own .All you need is some crayons or markers, some glue, and a photograph of yourself.
When you click on the frog underneath this paragraph, it will take you to a page you can print out. You can fill in and decorate this page, then give it to your relative to hang on the wall. It's a nice gift, and it may even help them remember things about you!
If you can't print this page at home, just look at it. Then you can make one of your own.
After you print the page, click on the "Back" button at the very top of your screen to come back here.
Ready? Click on the frog:
Sometimes it may be hard to spend time with your family member with dementia. It can be hard to think of things to say, or to understand what they mean when they talk. Here are some things you and your relative might enjoy doing together. If you start these activities yourself, they might just join in!
Color with crayons. Share a page out of a coloring book and some crayons. Even if you haven't colored yourself for a while, this one can be fun to do together.
Get out your old blocks or legos. If you start building, your relative may join you.
Old photo books are great to share. You can look through them together and talk about the pictures. If your relative doesn't seem to remember the people or places in the pictures, that's okay. You can remember for both of you.
These stories are written by children like you who also have relatives who have dementia. It may be called Alzheimer's, or Pick's, or Lewy Body, or something else - but these kids have some of the same feelings and experiences you have!
Would you like to share your story? Just click on the e-mail address at the bottom of this page, and write your story or feelings down to send to me. Please be sure to tell me your first name and your age, and who the person in your family with dementia is. Then please share a story or feeling. In about a week you will see your story on this page!
Don't worry about your spelling - I can help with that if you want. It's what's in your head and heart that counts.
This was written by Katelyn, age 7
It is hard to hear my Bampa because he has dementia (brain problems). It is hard to go to his house because it is boring and sometimes long and takes up half of our day.He used to take us for a walk near the creek but now he doesn't and I wish he would get over this stupid dementia but I know he won't. I feel sad because he will never get over dementia. All his caregivers are nice. Bampa is nice to me. I feel sorry for those relatives, grandparents, cousins that have this sickness and I hope you do too. It is very sad to have a family member that has dementia. It is hard to go through all of this.
This was written by Elaine, age 10, from Australia
My grandma has been a real pain to all of us and it's really hard on all of my family. Because she is really used to going out to places every now and then she likes to go out a lot . But because she forgets she thinks that she hasn't been out for a while and ends up going out every time we have spare time to do chores, but I remember and get bored of going to the same places that she likes to go to. I really just wish that she would just get over the difficult bit and just ... well, become a bit more handy and help to do some of the chores. I also get annoyed when she treats me like a 3 year old when I'm really 10! She does stuff like makes sure I go to bed when she's already done it 3 or 4 times, Make sure I go to the toilet when my parents go out to dinner and the worst thing is she panics really badly when no one else is around.
But besides all that life's good and I try to put it behind me and look forward. Who knows, they might just find a cure. P.S. Don't give up Katelyn!
This was sent in by a grown-up who has kids, and a relative with dementia
I am not a kid (or at least I am sometimes called a big kid), but I do have an older person in my family with dementia.
I know it can be hard, for kids of all ages, even grown up ones! You would be surprised at how many other kids have someone in their family with dementia. 1 out of every 5 people over 80 has dementia, most families have at least one person in that age group so 1 out of every 5 families has someone with dementia. If there are 30 kids in your class at school, that means probably 5 others have someone in their family with dementia!
It might sometimes help to look at it this way, as people get older they start to wear out, just like a car! Some people start to need stronger glasses, hearing aids, need help walking, or have other problems. With the people we love with dementia, it is their brains and memories that are wearing out. This doesn't make them weird, just special in their own way. I hope this helps you to cope! And I hope Carla doesn't mind a letter from a "big kid"
This essay was written by Rebecca Lynn Knox, age 16
Life with a Love One with Alzheimers
by Rebecca Lynn Knox
"Who are you little girl?"
"I am your granddaughter."
15 mins. later.
"Who are you get out of my house! I am going to kill you!"
This is a common sound you would hear in my house when I first moved in.
In a house with a Love one who has Alzheimer things can get out of hand. Especially with my Grandma, the never-ending remarks of "I am going to kill you!", "Who is this stranger?", and "Get out of my house!" were always among the most common.
Alzheimer is a hard thing to deal with. To have a Loved One with Alzheimer is a painful thing. Your Love One will not know who you are, because of Alz. No matter how much you try they won't remember you, so you will start your travel on the road that will kill your Love One and tear you in two. Even though it hurts that your Love One doesn't know you, she is still here, this will comfort you for a little while. Your Love One that is an adult and well educated, who could speak well, now can't speak at all. Instead they say "MrrpqustyVADmmR.", at this you will cry. Then you will wonder "WHY!", but this won't satisfy you. You may try to get them to speak, but it won't work and you will get mad. Your Love One will forget how to walk. This will be one of the hardest changes yet. Your sure to get worked up over this. When you go to carry them and you fail, you feel as though you let everyone down, but you have not. These are some hard stages but the ones to come can be harder.
The last stage and death can be filled with relieve and some of the gravest pain you have ever gone through. Your Love One will lose the ability to use the bathroom on their own. This will be embarassing and you will try to hide it and hide from it, but it will still be there. When you finally face the fact that your Love One needs your help going to the restroom, you'll cry. You will bite your tongue and do what you have to do. your Love one will become bedridden and will need to be turned regularly. This will be the hardest stage while your Love One is alive, you will be sure to hate this. this again will make you cry and you'll ask "WHY!", but you will face this too and you will survive.
About this time your Love one will pass on. This will give you relieve for the new freedom you've found but you'll feel guilty for this relieve. This will also give you a saddness that seems never-ending, but it will end. The death of your Love one is both dreadful and relieving.
In conclusion Alzheimer goes through many stages which are hard to deal with. They will not know who you are. they will forget how to speak. They will forget how to walk. They will lose the ability to use the restroom. They will become bedridden. Finally they will pass on.