What Dementia Meant to Me as a Child – Interview with Caitlin Mooney
The Ally Bally Bee Project is particularly interested in what dementia means to children and young people. We got in touch with Caitlin Mooney, BA Digital Art Student at University of the West Scotland, to find out more about her experience of dementia as a teenager. Please get in touch if you have a similar story to share.
Caitlin – what’s your connection to dementia?
I was around 14 when my Gran was officially diagnosed with dementia, although she was definitely changing long before that. My Gran was a very strong woman; she was kind, caring, and passionate. She hadn’t long made it through the passing of my Grampa when we began to notice changes in her personality. We had just decided to start going back on our annual October trips to Blackpool – I think we had one ‘good’ year but the next one wasn’t the same.
How was dementia first explained to you?
I must have been between 14 and 15 when I actually heard it referred to as dementia. You see, my family had really sheltered me from it as I was extremely close with Gran but it was a relief to know that she wasn’t just going a bit loopy for no reason. Even though I was well into my teens, I had no clue what dementia meant. I don’t really remember it being explained to me, I just had to make of it what I could from my own experiences and time spent with my Gran. However, a few years ago my Mum took a course on dementia and I found her workbooks to be a real insight into what was going on. My Mum, Aunt and Uncle eventually became her full-time carers and I learned from them how to take care of Gran in my own ways.
How did your granny’s dementia change her – what behaviour changes did you notice?
The first time I probably noticed anything ‘wrong’ with Gran was in Blackpool. We were all sharing a room and my Aunt had weirdly made a point of leaving the light on in the bathroom one night. I thought this was odd but I soon found out why when Gran woke up in the middle of the night and couldn’t locate the bathroom – even with the light on. She was adamant that she was in her house back at home and I could see my Aunt was in a lot of distress. After that I started noticing more and more things. At first it was just things like phoning me constantly in the middle of the day and phoning in the middle of the night. Then it bumped up to her getting ready to try and leave her own house to get a taxi back to her house and phoning the police and taxi companies by accident. Eventually she wasn’t able to walk or string a sentence together – this was probably the hardest part.
The family had put her into a care home and she had been hospitalised once or twice because she refused to eat or drink but these places were not for her. We’d often find her slumped on the beds looking worse than she did prior and she broke her arm while in care. The family was understandably furious and took matters into their own hands. With the help of Alzheimer Scotland my Gran was able to live her last couple of years comfortably at home constantly surrounded by her family.
How did your granny’s dementia affect the family and your childhood?
I wasn’t actually as upset about my Gran’s condition as I thought I would have been. It definitely made me sad that I couldn’t spend the quality time with my Gran like I used to and I missed our Blackpool trips greatly. But I made up for that lost time by visiting her whenever I could and helping to feed and care for her. I actually enjoyed this time with her and she had a point of continuously staring at me whenever I visited – that made me smile.
My Mum has always been a strong woman (she is definitely a rock) and being the manager of a care home for people with special needs, as well as helping to manage two other houses of the same kind, she would then come home to care for my Gran. I think she had it the hardest work-load wise but she always put her Mum first. My Uncle has been very strong throughout it all but I know it must have been hard for him to watch such a strong person deteriorate and not be able to do anything about it. My Aunt has by far taken it the worst. She is definitely lost without her and she took the brunt of my Grans insults and head-butts when she was alive – a memory we now look back on with laughter.
All of the family took it a different way – most have been strong because, even though she was not the same, Gran still knew how to make us laugh in the few words that she spoke. My Dad always treated her like the same old Doris she used to be whenever he visited but he was definitely shaken by her condition inside. I think none of us really understood in the beginning what was happening to her and it was harder then but we have all grown over time and learned about this horrible disease as it developed.
Why is it important to teach children about dementia?
I was very sheltered from my Gran’s condition when I was young and I think I would have benefitted from knowing more at the time. I like to think I was a strong person back then and I would rather have been able to help more, than to be sitting around helpless. I think my Mum understood this somewhere along the line and I was able to help and visit. I think the family was just as clueless as me at that point though and it was a scary time for them.
I think it’s important to teach children about this as young as we can because it can happen to anyone’s grandparents at any given time and it is the understanding that will help a child to be less upset. I think it is also important to teach a child, especially in the early stages, what to do or say during an episode of dementia. I know I didn’t know what to say but that I just had to be reassuring and go along with it. As a creative person I would definitely have benefitted from books or websites that showed me how to deal with what was going on.
Knowing what you know now, how would you explain dementia to a child?
Dementia is a tricky subject to explain, even to an adult! I would probably tell a child, that dementia isn’t a scary thing; it’s nothing to be upset over, but that the person is just very confused. I would tell them that even if the person seems different or strange to just to go along with it and not further the person’s confusion or make them feel crazy. If it was a child’s grandparent who was affected I would assure them they are not going anywhere any time soon – and to just treat them like they always would. I would show them how they can help and to get them as involved as possible so they can learn as they go along.