This is an exciting time for me. In the past two weeks I’ve received double page spreads in several of the UK’s national newspapers and magazines relating to my experiences with Alzheimer’s disease.
As regular readers of this column will know, both of my parents were struck down by this vile disease and I spent a huge part of my life as a full-time carer to both of them.
My folks took Alzheimer’s one after the other. When my mother died, we had a brief hiatus and then my father developed the disease. When I got the phone call with my father’s diagnosis back then, I almost collapsed with fear and dread.
My knees literally went from beneath me when I was delivered the news. Of course I knew that something was wrong with dad, but I had somehow managed to kid myself that it wasn’t Alzheimer’s. Hearing someone actually verbalise my worse fear was nightmarish. Dad and I went through hell before he finally gave up his valiant fight against this monster in 2013.
As the third anniversary of my father’s death approaches, I have written and edited a book about my time as a carer, hence the reason I have received so much media publicity recently.
Anyone who has been or currently is a carer, will no doubt identify with my journey. I have been very honest in describing the years of aching loneliness I experienced when I was swept into the Alzheimer’s world.
Trying to battle against this disease with my parents affected my own health. I developed crippling panic attacks which arrived out of the blue and led to agoraphobia (a fear of open or public spaces) that lasted almost 10 years. Thankfully I have fully overcome this terrible affliction, it left me when I no longer had to deal with my parents’ dementia.
My book is called The House That Built Me and will be published by Accent Press this Thursday, May 19, to coincide with Dementia Awareness Week.
The book came about when the former resident of my home came to my door shortly after my father’s death in 2013. The man had lived in my house from 1944-1964. His mother had just died, sadly two weeks short of her 100th birthday.
My visitor had left North Belfast and had been living in New Zealand for decades and had come back for his mother’s funeral. We talked about our childhoods at the house and how I had lived there all my life and was now raising my son there.
When we said our goodbyes, I suddenly remembered a framed poem that I had written about the house for my parent’s 50th wedding anniversary. The poem hung in the hall. I grabbed it and rushed out after him as I wanted him to have it, but he was gone. All I know is that his name was Mr Moffat. After his visit I thought about how a childhood home can hold such wonderful memories.
The idea then came to me, that perhaps it would be a good idea to collect childhood home recollections from celebrities and put them together in a book - a collection of memories to help those who have lost their memories due to Alzheimer’s disease.
Many well-known people took part including Lorraine Kelly, Fearne Cotton, Alan Titchmarsh, Bill Oddie, Shane Richie, Dame Mary Peters and many more shared childhood stories with me.
This is Dementia Awareness Week. There are around 20,000 people in NI living with dementia, this number is expected to rise substantially in upcoming years. My life as a carer was greatly enhanced by the Alzheimer’s Society Talking Point Forum.
This is an online forum where you can chat (anonymously if you prefer) to other carers and those dealing with Alzheimer’s/Dementia. The advice, support and help I received there was invaluable to me.
Lots of awareness raising and fundraising events will be taking place in Northern Ireland this week including a unique exhibition of artwork at the Ulster Hall which runs until May 26.
The art has been created by people living with dementia and their carers, which aims to challenge misconceptions about the disease.
You can also purchase my book from Amazon and leading bookstores, 100 per cent of my royalties go to the Alzheimer’s Society.
In the meantime, I shall continue desperately seeking Mr Moffat, to let him know how his visit to his childhood home that day, resulted in a charity book in aid of Alzheimer’s.