Helen Johns: A Duck Out of Water: Mum, dementia and care home life

In 2012 I was minding my own business – quite literally – running a small education consultancy. My world (and that of my two sisters) changed when our mum was diagnosed with dementia and urgently needed 24-hour care. There was no gradual decline that helped us get used to the changes we were about to face – although I now recognise symptoms that we missed earlier. For Mum, it was a rapid downward spiral that took her straight to the doors of a local care home. 

I hoped that Mum’s terrible anxiety would be soothed by having all the things we could not provide: the safety of a secure but homely environment, 24-hour care and professional expertise that would assist with her symptoms, help with Mum’s many medical issues and most importantly – the companionship of people of a similar age and frailty.

However, surviving care home life turned out to be much more complex than I had imagined. Carers were kind and polite, but their priority seemed to be on getting things done rather than how people spent their day. Activities were sporadic and relied on entertainment-type events; singers performing in the lounge to a large group of residents. Initially I thought this was a good thing but soon learned that Mum was either too shy or anxious to attend these so politely declined. She needed something else.

The communal lounge – far from being a comfortable base where Mum could enjoy the company of others – was dominated by one lady who constantly berated others. Of course, this lady was living with dementia too – it wasn’t her fault – but her shouts created a scary atmosphere that Mum often avoided and chose to stay in her bedroom. This isolation made the symptoms of Mum’s dementia worse and very quickly she would become distressed. She seemed more bored, lonely, confused and frightened than she was when she lived independently.

There were other difficulties too related to her care which added to her plight. Of course, I met with senior staff and managers to try to fix these, but the same things came up repeatedly.

Observing my mother’s traumatic experience made me determined to do something to improve care home life – for her and others. I immersed myself in the world of dementia care, meaningful activities and distressed behaviour. Eventually I changed my career and started working with activity coordinators locally and nationally. I also worked on various projects with my local Healthwatch and became an Expert by Experience supporting CQC inspections.

For almost 9 years Mum and I navigated care home life together. It was far from easy, and it changed us both. I’ve now written it down in a memoir, A Duck Out of Water: Mum, dementia and care home life.  I’d read a lot about dementia, but nothing reflected our experience. This book tells the story from a resident’s (and relative’s) perspective and considers ways to thrive rather than just survive. The book is available from my website www.hmjconsultancy.co.uk/bookstore  or on Amazon.