My name is
Irene Mackay, author of “The Forgetful Elephant,” which explains the memory
loss aspect of dementia to young children in a way they can understand.
When my Mum
was diagnosed with Vascular Dementia in 2010, I had no idea what dementia was.
I wish I had, as I would have handled and coped with her behaviour towards me
so much better. Following her diagnosis, I wanted to learn more about dementia
and help others who had this illness, so I went to work with Alzheimer Scotland
as a Home Support Worker.
There, one
particular gentleman whom I gave support to had a little grand-daughter who was
always there during my visits. Elyse was 3 years old at the time, and couldn’t
understand why her grandpa behaved the way he did or why he could no longer
remember who she was. This got me thinking that there must be many children in
the same situation as Elyse, so I did a bit of research to find out if anything
was available to give some sort of explanation to young children. When I
couldn’t find anything, I decided to do something about it, and wrote “The
Forgetful Elephant.”
When a family
member or someone close to us is diagnosed with dementia, it can be a very
difficult time. More often than not, it is a grandparent who is affected by
this illness; therefore there will be young children involved. It can be
difficult enough for adults to understand the effects dementia has on someone,
so we might think it would be easier not to try to explain this to a child as
we want to protect them. The child may already be aware that Grandma/Grandpa is
behaving differently, but they don’t want to mention it. They may even be
frightened if the person with dementia gets angry and perhaps think it is their
fault. I used to blame myself for the way my Mum behaved towards me, and my
concern is that young children will do the same.
After
self-publishing my book, I wanted to get out in to the community and speak to
children about dementia and read the story to them, so I began to approach my
local Primary Schools. I am delighted to say I have visited many schools,
reading my book to children and offering a question and answer session which
enables them to talk openly about dementia. The feedback I receive from
teachers and parents after my visits is always positive. Very often the
teachers who are present during my sessions are amazed by what the children
already know about this illness, by the questions they ask, and how many
children actually have a relative with dementia.
I have also
had the privilege of visiting Northern Ireland where an organization called
DEED (Derry Engaging and Empowering Dementia) are using my book as a tool to
educate children in their community about dementia. The Ulster Girl Guides also
adopted my book as a way for the girls to earn their badge by talking to The
Brownies about dementia.
I am very
proud of what I have achieved over the past four years. It hasn’t always been
easy, as so many people still don’t think we should talk to children about
dementia, and I have had many doors slammed in my face. On the other hand, I
have received many emails and messages through Social Media telling me how my
book has helped families, and congratulating me on the work I am doing, which
makes it all worthwhile.
My Mum sadly
passed away in August, 2014. I am thankful her strength, passion and determination
live on in me and help me to continue with my campaign to raise children’s
awareness of dementia in her memory.
You can find
out more about me, my campaign and my resources on my website. You can also follow
me on Twitter.
