Today I wanted to offer some advice from my personal experiences on how to tell children that a loved one has Alzheimer’s.
The reason that I’m doing this post is because last night (18th May 2015) I took part in the #DiverseAlz Twitter chat and this was the main topic discussed. I had a few ideas but I didn’t feel like I was getting my points across properly in 140 characters so I thought I’d follow up with a blog post!
First of all I just want to say that I think it’s REALLY important to tell children about Alzheimer’s for so many different reasons. For example:
- It can stop them being afraid of the ‘strange’ behaviour of the person with Alzheimer’s.
- It can make them feel included because talking in hushed tones or using ridiculous code words like ‘the problem’ when referring to Alzheimer’s will make the child or children feel left out because children, especially older children like to know what’s going on.
- It could inspire them to want to go on to find a cure or to help raise awareness or to even want to become a nurse / carer when they’re older because they know their loved is suffering and they’d like to help.
- It’s important to tell children about Alzheimer’s because it’s something EVERYBODY should know about. The more it’s talked about, the more people understand the less stigma there is attached to the disease and the less people will think of people with Alzheimer’s as being like the “lunatics” portrayed in old pictures of places like Bedlam. They’re not lunatics they’re humans just like us.
- If you tell children whilst they’re young they’ll grow up with an understanding of the disease and they won’t be judgemental (or at least you’d hope they wouldn’t be) towards people with the disease. Knowledge is definitely power.
They’re my five main reasons that I think it’s important for children and indeed adults as well to be told about Alzheimer’s. There’s so many other reasons I could list but for me they’re the most important. However I’d love to hear your reasons so let me know in the comments below, on Twitter @MissCharlotteEm or on any of my other social media pages which you can find by clicking here.
So let’s get on to the main point from last night’s discussion which was how to tell children that a loved one has Alzheimer’s.
Let me start by explaining for those of you that don’t know, I’ve been saying the long goodbye to my Grandad for 5 years now, I’m not a medical professional nor am I any kind of Alzheimer’s professional I do however have an abundance of personal experience obtained by caring for him for the last 5 years that’s why I offer my opinions.
I have two little sisters who live in France and come to visit us once or twice a year, they were 8 and 10 when Grandad was ‘diagnosed’.
At first we didn’t tell them about his Alzheimer’s, we just said he was poorly and left it at that because it was easier than fully explaining. In hindsight though we all really wish we’d told them straight away. I’ll never forget the day the eldest looked straight at me and said “What’s really wrong with Grandad?” Kids aren’t stupid, they pick up on things even when you think they don’t.
When we explained to the kids what was really up with Grandad we all did a lot of talking and a lot of explaining, we made sure that in the nicest possible way they understood that he was only going to get worse but that he still loved them both very much even if he forget to say it. We encouraged them to play lots of games and dance and sing for him and to just carry on being silly and having fun like they always used to. We also made it very clear that although Grandad would sometimes act out of character and get angry he never meant it, it was just part of the disease.
They actually accepted it all really well and were and still are brilliant with him. I think it helps that they don’t see him very often so they seem to really cherish the time that they do have with him when they’re visiting.
In July 2013 my little sisters actually co-wrote a blog post talking about how they felt about Grandad’s Alzheimer’s, you can click here to read that if you’d like.
Anyway, here’s some of my tips on how to tell children:
- Be honest from the very beginning.
- Remind them regularly that the person with Alzheimer’s still loves them even if they forget to say it.
- Remind them regularly that the things done out of character such as anger are just part of the disease and shouldn’t be taken personally.
- Encourage them to behave exactly as they used to with the person, play games, sing, dance, act, BE SILLY!
- Encourage them to be patient and to not get upset when they have to repeatedly tell person with Alzheimer’s things.
- Make sure that they know in the nicest possible way that the person isn’t going to get better, it’ll only get worse.
- Make sure they understand what’s happening every step of the way, just as it’s hard for you it’s hard for the children too and not knowing makes it harder. If person is being put in a nursing home TELL THEM, if person is advancing on to next stage and deteriorating more TELL THEM, honestly it’s so important to tell kids. They listen even when you think they’re not, they overhear your conversations about ‘the problem’ and piece things together in their mind that are at times worse than reality.
- Encourage them to take part in raising awareness of Alzheimer’s. Make teaching them about the disease fun.
- Talk! Have family discussions and include the kids, keep everything out in the open. Make sure they know that it’s okay for them to talk to you about it if they’re upset, worried or just don’t understand.
- Don’t get angry when the kids ask loads of questions about it, asking questions is good!
- Don’t tell them they’re “too young to understand” or it’s a “grown up problem” Alzheimer’s affects the whole family not just the adults, so don’t be an ass about it.
There you have it! My 11 tips for how to tell children about Alzheimer’s. If you’d like to discuss these tips further with me feel free to comment below or catch me on twitter @MissCharlotteEm or on any of my other social media sites which you can find by clicking here.
If you’re new to Alzheimer’s, whether you’re caring for a loved one with the disease, know someone who’s just been diagnosed, work as a carer, have the disease yourself or just want to know more and talk to more people about it I highly recommend you get yourself on Twitter and join in #AlzChat every Monday night from 8pm UK time and #DiverseAlz which is normally every Thursday at 8pm UK time.
Just use the hashtags to follow along and join in the discussion, some truly amazing people take part in those chats!
Thank you so much for taking the time to read this blog post. I apologise for how long it is but I wanted to get my point across properly!