Alzheimer’s caregivers frequently report experiencing high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other forms of dementia.
Dawn Vance shares with us how her journey caring for her mum has led her to write as a coping mechanism – through the different stages of her mum’s illness before and now using it to inspire others that are walking in the shoes she once did.
By Dawn Vance
Five years ago, I sat next to my mum while her doctor diagnosed her with Lewy Body dementia. It seems like a lifetime ago now. Actually, it’s more extreme than that: it seems like a different life. When I think about it now it feels like the last five years happened to someone else; it’s like watching a sad movie that nobody wanted a part in.
From that day in the memory clinic until my mum died last year, our lives changed beyond recognition. In a weird way I’m glad that the disease progressed quickly, as she soon reached the point where she wasn’t even aware that she was ill.
Prior to mum’s illness I’d spent most of my 20s living with my friends, partying too much and generally having a great time. I’d never had much of a life plan. I’d studied English Lit at university and, like every other English student, always quite fancied being a writer but never quite got round to it despite my mum always telling me I should. It’s a cruel irony that it was her illness that made me finally put pen to paper.
I wrote my first article on a gloomy Saturday in November 2014. I’d been looking after mum and it had been a really crappy day. She’d packed all her clothes in plastic bags and demanded that I take her home to Ireland. Usually I could settle her by claiming that the ferry wasn’t running, or that we’d go the next day, but that day nothing worked. She was hysterical, and by the time my brother arrived to take over in the evening I was at breaking point.
When I got home there was no wine in the fridge and I couldn’t be bothered to go to the shop. As my usual coping mechanism wasn’t available I turned on my laptop and logged on to ‘Talking Point’, the UK Alzheimer’s Society forum. I’d never posted anything on there but I found it strangely comforting to read about other people’s caregiving experiences and feel like I wasn’t the only one struggling to cope.
This time was different. I was angrier than I’d ever been. Angry at my mum for getting ill, angry at myself for feeling that way, angry that dementia had ruined everything, angry that there was no wine…
I spent the next twenty minutes venting, furiously tapping keys in a long forum post that became ‘Dementia – they don’t tell you these things’, a brutally honest rant about life as a caregiver. It was quite therapeutic to write it all down, but I never expected anyone to read it. I was pretty shocked when it ended up going viral. At first I felt guilty for sharing the details of mum’s illness, but then I figured it might help others to feel a bit less alone.
That angry vent led to other articles about dementia and caregiving. Despite being a complete technophobe I even started a blog. I’ve always found it difficult to talk to people about my feelings so it helped to write it down. When mum died I felt I had to get away from my home town and all its memories, so I accepted a job abroad and ended up writing about that too. I didn’t expect life to turn out like this, but if there’s anything the last five years has taught me, it’s to live for the moment and make the most of things. I still don’t have a life plan, but that’ll do for now.
In terms of finding an outlet for the stress that comes with caregiving, it all comes down to finding something that works for you. For me, it was writing. For my brother, it was sport. For my dad, it was having five uninterrupted minutes to read his newspaper. You might not find it straight away (it took a couple of years for me to start writing things down), but keep looking. It’s worth it.
Follow Dawn on twitter.