Christina Neal writes about the launch of Dementia Help and what inspired her to do it…
Why did I set up Dementia Help? I’m a writer, editor and published author with 25 years of media experience. My second book, Dementia Care: A Guide, was published last August. I’m the Online Editor for The Alzheimer’s Show website and I work with a number of clients specialising in dementia and elderly care, including Re:Cognition Health (award-winning brain health experts) and SweetTree Home Care Services. I’m also a Dementia Friend and have received specialist dementia training courtesy of SweetTree. I speak about dementia at The Alzheimer’s Show and have given talks to company employees struggling to balance their busy lives with caring for a loved one.
But those are just credentials. The most important bit is my personal experience. I cared for my late mother, Hazel, who had vascular dementia, for almost a decade. She was first diagnosed in 2009, though I suspect she’d had dementia for approximately two years before that. When she was first diagnosed, I knew very little about dementia. I had no help or support. A scan confirmed the diagnosis and her GP prescribed medication to help manage the symptoms. After that we were very much on our own. Getting mum to remember to take that medication (and in the appropriate dosage) was just one challenge. Many other challenges followed over the next nine years. I learned a great deal.
At first, mum lived more than an hour away from me. We were separated by the M25. She lived in Essex and I lived in Surrey and worked in West London. I had one family member providing occasional (and unreliable) support. At first, I selfishly wondered why this had happened to me. I had a great job as Editor-in-Chief of Women’s Running magazine and was trying to build my career. I wanted to lead my own life. But as time went on, I realised that mum was far more important than my career. Just as I hadn’t asked for this responsibility, mum hadn’t asked to be diagnosed with dementia. As her confusion grew and her mood swings became increasingly frequent and unpredictable, I realised just how frightened she must have been.
You and I have choices. We wake up every day with a purpose. Even if we don’t like our job or our lot in life, we have a focus. A list of things to do that day. Imagine waking up not knowing what you have to do. Imagine wondering whether you’re working, retired, or feeling unsure about what stage of your life you’re at; whether or not your husband is dead or alive or whether your kids have left home. This happened to mum frequently. Mum would call me and ask if she needed to be anywhere or do anything that day. Of course, I never let her miss appointments and my memory became her memory. I took her to every appointment and always made sure she was where she needed to be. But she felt frustrated by the fact that she had to rely on me for so much. I tried to make out it wasn’t a big deal. But in reality it was very hard for both of us.
I wish I’d known then everything I know now. Dementia is like a roller coaster of emotions. You’re facing the daily challenges of caring for the person and keeping them safe, while grieving for them as they change and fearing for the future. It’s important you know you’re not alone. Someone else understands. Whatever you have experienced, or are about to experience, someone else will have been through the same thing. I will be sharing my experiences and encouraging others to do the same, in the hope that you find it useful and perhaps even comforting.