I’ve just listened to a very moving piece of radio which I wanted to share with you. Recently, I came across The Untold on BBC Radio 4 for the first time. It’s essentially a series of personal stories, told over a period of time. Real stories – the lives of “ordinary” people placed in extraordinary situations – are often fascinating and this episode of The Untold fitted that bill.
The two protagonists are Hayley, a young woman with a serious love of all things Disney and Kevin, her father. While Hayley was working in the United States, Kevin was diagnosed with Pick’s Disease, a form of dementia, aggressive in Kevin’s case. She came home but found it very hard to relate to the changes in Kevin:
“I was so close to my dad. He was one of my best friends…. . How have I come to dislike this person?”
While every person with dementia is unique and every experience different, that sense of struggling to get to know someone you have known all your life, and of mourning the living is a common one. I felt that that I mourned Mum for nine years after her diagnosis and then, when she died, I started mourning all over again. The mourning is different – the gnawing sadness the same.
Hayley has to make the difficult decision of whether to return to her dream job in the United States and in doing so, probably say goodbye to Kevin for the last time. I won’t say any more because the programme is available on BBC Sounds (I’m sounding dangerously like an in-house promotion there) but it’s worth a listen.
Life has to go on but for those for whom a loved one is living with dementia, that going on can be wracked with guilt. Hayley’s story is unique but it’s also universal.