Charlie: About 4 years ago we went to see our Grandma’s House in Champaign, Illinois - just like we did every vacation since we were born. It was always fun. We ate out of her cookie jar and her fridge. Then we went and played in the park. Just like normal.
Charlie: So we decided something had to be done. We turned our lower level rec room, a walk out basement overlooking the swimming pool and the woods where dog walkers come by often, into her new home. So Grandma came to live with us.
Charlie: On New Year's Eve, for no reason, she just went upstairs to my parents room and parked herself in front of the television. We sat on the floor with her, she was smoking, using the soap dish as an ashtray, drinking diet Coke and eating cookies. Those things plus her dog were her most precious things in the end - diet Coke, cigarettes and cookies. We still have her dog.
Charlie: She would come upstairs and lie on the couch and smoke and swear. She would poke through any food in the kitchen. Or the pizza that we were eating. It wasn't good. We had to throw loads of food away. She even washed her hair in the kitchen sink when we had company. Soon our friends stopped coming over.
Charlie: She liked us though so it was easier for us to take her dinner in the evening. One of us would take her her dinner and the other one would take her pills down to her.
Charlie: We would spend time with her in the evening but she normally didn't want to talk much.
Charlie: Then the disturbances started. They were usually at night. She slept all day for the most part.
Charlie: But then it started happening 2, 3 or 4 times a week. Mom would go down first usually, then me and then A.J., then Dad if it got serious. He’s the grouchiest of all of us in the middle of the night. It took ages to calm her down.
Charlie: It also got a bit scary. She would scream for help all night. Or she would break things. She would pull out knives - even though we had hidden all the knives. She would slam cabinets. One night we found the stove turned on and she had put a pile of flammable things on the stove.
Charlie: Sometimes she would walk upstairs and then she would forget how to walk down the stairs, sometimes she would lay on the floor screaming, sometimes she would forget how to walk, sometimes she would forget how to stand up.
Charlie: Sometimes it made me a bit angry because I was tired a lot. I don't like being angry.
Charlie: But it wasn't easy. And school didn’t make it easier even though they could have.
Charlie: There was a teacher at the school whose wife had Huntington's disease, he understood us - along with another kid whose grandma had Alzheimer’s. And our friends and their families were really understanding. But that was it. At the school they said it was a YOU problem. Their problem was grades and sport. But not stuff like this. No allowances were made, no help or support was given. Nothing. When she died we got lots of support from friends and family. School was sympathetic when she died. I think they understand that moment, that week when someone dies, but they didn't understand the two years when we were caring for her.
Charlie: At least we managed it and we learned from it. Other caregivers have it way worse than us.
Charlie: There are over 1.4 million documented kids in the United States caring for family members. No-one knows how many there really are. Except most of them are not like us. We are the lucky ones. We learned about caring for people early, about the importance of life, about the dependence of people on each other. And yes our social lives suffered and maybe our grades were B's instead of A's. And I got angry sometimes and we both were sad and tired a lot. But the thing is we are not average child caregivers. In fact, as hard as it was, we had it pretty good. So when the school said it’s a YOU problem there was quite a lot of US to deal with it.
Charlie: Here are 10 reasons why we had it easy compared to some of the child caregivers out there living in homes near you.
AJ: When we look at that list we think we were really lucky
Charlie: Imagine if we had been alone, or older like in high school and needing to earn money AND do school AND care for someone - all of it.
Charlie: And their school is probably also only understanding when somebody dies.
Charlie: By that we mean the people in schools, the state officials, people in Government. You people should be supporting and recognizing those kid caregivers out there. How is it different from Boy Scouts or Girl Scouts or Planting a garden or volunteering with Special Olympics? Surely Kid Care takers learn just as much life skills at home, unseen and unrecognized as doing those things?
AJ and Charlie: So - please - Do Your Job. Support and recognize the Kid Caretakers. Thank you.
- AJ: But the thing is this trip was not normal. She slept all day this time, she hardly talked to us and she really wasn’t herself. It was clear to all of us she wasn’t doing very well. She had Alzheimers. My parents tried to help grandma stay in her house. She didn't want to go anywhere else. But the people my mom and dad hired were unreliable and wouldn't always show up. And care homes in Illinois had waiting lists that were years long. Or really horrible. Virginia options near our house were no better.
Charlie: So we decided something had to be done. We turned our lower level rec room, a walk out basement overlooking the swimming pool and the woods where dog walkers come by often, into her new home. So Grandma came to live with us.
- AJ: The first Christmas was cool. It was a real family Christmas. Grandma loved Christmas, it was her everything. She helped decorate the tree, went to our Christmas pageant at school and she even liked Mom’s cooking. Which is actually great but grandma loved to criticize a lot of things my mom did.
Charlie: On New Year's Eve, for no reason, she just went upstairs to my parents room and parked herself in front of the television. We sat on the floor with her, she was smoking, using the soap dish as an ashtray, drinking diet Coke and eating cookies. Those things plus her dog were her most precious things in the end - diet Coke, cigarettes and cookies. We still have her dog.
- AJ: Before Grandma we always used to have friends over. We always had lots of food in the house and Mom was a bit more relaxed than some of the other Moms. And we invited people over a lot. It was the designated party house.
Charlie: She would come upstairs and lie on the couch and smoke and swear. She would poke through any food in the kitchen. Or the pizza that we were eating. It wasn't good. We had to throw loads of food away. She even washed her hair in the kitchen sink when we had company. Soon our friends stopped coming over.
- AJ: Grandma was pretty aggressive with Mom. She would swear at Mom a lot - Mom says Grandma was always that way. She started shouting and swearing even more with Alzheimer's.
Charlie: She liked us though so it was easier for us to take her dinner in the evening. One of us would take her her dinner and the other one would take her pills down to her.
- AJ: We had to learn how to get her to take her pills. We would say “Here is your dinner grandma, it’s your favorite - it’s chicken - but first you have to take your medicine.”
Charlie: We would spend time with her in the evening but she normally didn't want to talk much.
- AJ: It was quite boring but I think she liked it. We would do our homework in her room just so that she would have us near her. Charlie started to draw.
Charlie: Then the disturbances started. They were usually at night. She slept all day for the most part.
- AJ: The first night it happened it was kinda exciting. Being up at night past our bedtime during the week. Like an adventure, it was a new experience for us. And the next day was school, and we were tired but it was ok.
Charlie: But then it started happening 2, 3 or 4 times a week. Mom would go down first usually, then me and then A.J., then Dad if it got serious. He’s the grouchiest of all of us in the middle of the night. It took ages to calm her down.
- AJ: But sometimes she would be ok after 15 mins, sometimes 2 hours and sometimes we would be awake all night. It was erratic random and unscheduled. When we went to bed we didn't know whether tonight would be peaceful or not.
Charlie: It also got a bit scary. She would scream for help all night. Or she would break things. She would pull out knives - even though we had hidden all the knives. She would slam cabinets. One night we found the stove turned on and she had put a pile of flammable things on the stove.
- AJ: She didn't have a routine. Everything was very random. It was like taking care of an angry toddler. Sometimes she would forget who mom was, who Charlie was, who I was.
Charlie: Sometimes she would walk upstairs and then she would forget how to walk down the stairs, sometimes she would lay on the floor screaming, sometimes she would forget how to walk, sometimes she would forget how to stand up.
- AJ: Sometimes she would ask where her mom was. Or her dad. What do you say to your grandmother when she asks where her mom is?
Charlie: Sometimes it made me a bit angry because I was tired a lot. I don't like being angry.
- AJ: Sometimes I wished we didn't have her with us and then I thought about the options - it felt a little mean. If it was me being cared for - it would be tough on my family but I would want to live with my family in my last days - like we did, they would learn about life - see the progression - it’s better to have caring family members around you, good food, your dog and no strict rules like you have in a nursing home.
Charlie: But it wasn't easy. And school didn’t make it easier even though they could have.
- AJ: I tried to keep it a secret at school at first. I didn't know how to approach it. It did affect my grades, I needed a tutor and extra lessons for a bit. And I noticed that sometimes I got more aggravated. Although I'm usually very positive. We didn't know how long she would be with us.
Charlie: There was a teacher at the school whose wife had Huntington's disease, he understood us - along with another kid whose grandma had Alzheimer’s. And our friends and their families were really understanding. But that was it. At the school they said it was a YOU problem. Their problem was grades and sport. But not stuff like this. No allowances were made, no help or support was given. Nothing. When she died we got lots of support from friends and family. School was sympathetic when she died. I think they understand that moment, that week when someone dies, but they didn't understand the two years when we were caring for her.
- AJ: The first few days were sad after she died, but then she was done suffering. Charlie said after she died there's a “little bit of happy” in this, because for the last six months she wasn't living she was suffering. I think I'm stronger now. Little things don't get to me any more like if I couldn't get a game or whatever it is that I wanted. I think it's a plus - I can be there for other kids.
Charlie: At least we managed it and we learned from it. Other caregivers have it way worse than us.
- AJ: Somebody asked me “Is it fair that this happened to us?” It can happen to anyone. It was better that it happened now rather than in high school when our grades and social life really start to matter. It will not stop us doing good in real life. It taught me to have empathy. You don't know what people are going through.
Charlie: There are over 1.4 million documented kids in the United States caring for family members. No-one knows how many there really are. Except most of them are not like us. We are the lucky ones. We learned about caring for people early, about the importance of life, about the dependence of people on each other. And yes our social lives suffered and maybe our grades were B's instead of A's. And I got angry sometimes and we both were sad and tired a lot. But the thing is we are not average child caregivers. In fact, as hard as it was, we had it pretty good. So when the school said it’s a YOU problem there was quite a lot of US to deal with it.
- AJ: It was our Grandma who needed help - not our Mom or Dad
Charlie: Here are 10 reasons why we had it easy compared to some of the child caregivers out there living in homes near you.
- Charlie: Our Grandma ‘only’ had Alzheimer's. There are even worse diseases out there that kids are having to deal with. Cancer, PTSD, HIV, Multiple Sclerosis, Huntington’s Disease
- AJ: Both our parents are working.
- Charlie: AJ and I have both parents living at home together.
- AJ: Sure we gave up our awesome rec room. But we had an area in the house where grandma could live and have some privacy. She came upstairs sometimes and messed with our life and our friends by smoking and swearing and poking her fingers in our food - but at least we had our own bedrooms and bathroom.
- Charlie: Grandma wasn't the breadwinner in the family - we were ok for money - we didn't have to worry about earning and buying the food and medicines that we took to our Grandma every night. Thankfully, we didn't have to do every little thing like cook or help with the really hard stuff like personal hygiene. But we saw really hard things that kids shouldn’t have to see
- AJ: We are young kids - we weren't doing really important life-defining college entrance exams
- Charlie: We had Maria, our nanny, who helped Grandma in the afternoons if she woke up then.
- AJ: And Charlie’s drawing really took off
- Charlie: There’s two of us.
- Charlie: Lastly-we have the chance to be kids again. Some kids don’t.
AJ: When we look at that list we think we were really lucky
Charlie: Imagine if we had been alone, or older like in high school and needing to earn money AND do school AND care for someone - all of it.
- AJ: Because there are kids out there like that.
Charlie: And their school is probably also only understanding when somebody dies.
- AJ: We are only kids. But the grown ups need to figure out how to help the kid caretakers
Charlie: By that we mean the people in schools, the state officials, people in Government. You people should be supporting and recognizing those kid caregivers out there. How is it different from Boy Scouts or Girl Scouts or Planting a garden or volunteering with Special Olympics? Surely Kid Care takers learn just as much life skills at home, unseen and unrecognized as doing those things?
- AJ: We don’t understand the details of how you do that. We have some ideas. But we are kids - that’s not our job. That’s your job. The grown ups in schools, universities and state governments.
AJ and Charlie: So - please - Do Your Job. Support and recognize the Kid Caretakers. Thank you.