Our dementia journey

One day in 1998, I got a call at work. My Mum had broken her hip and was in hospital. She had suffered a stroke – and it wasn’t the first. That was the start of our dementia journey together. She spent the next ten years in three care homes and the whole family went into a slow, painful mourning.

But her dementia was a huge gift to me. We had never been close, my Mum and me; but over time, even as her condition worsened, I got to know, respect and love her and we became increasingly close. By the end of her life, she still knew me – and finally, I knew her.

I was appalled by what the dementia was doing to her. With her fast-diminishing ability to grasp what was going on around her, I knew I would “lose” her – she could easily become just another stranger amongst strangers. So I started reading. I gobbled up every book I could find on dementia and dementia care, on memory, reminiscence, neuroscience, validation therapy and more, building a library of knowledge, wisdom and expertise about how we care for those with this terrible disease.

I came across a comparatively recent discovery, the “reminiscence bump”. I learnt that, with her long-term memory still in pretty good shape, Mum would still be able to enjoy – and communicate - her past life experiences and background if there were triggers for her and that this would help her carers to care for her better, too. I built an album of her growing-up years with simple autobiographical captions. “This is My Life” became her talisman, right to the very end.

Then, (rashly, some thought) I left a career in creative media to pursue the idea of doing this for other sufferers too. So now I have a new career; writing and speaking about my passions, facilitating skills development programmes for care staff and learning workshops for families; running conversation and life story projects for people with dementia and developing new products for them. 

All good stuff, but what I can never forget is that it's my lovely Mum who helped me do it - in ways she would never know and could never have imagined.

Read more from Sarah Reed on her blog The Age Page - and add your comments on this post here.