Marianne Talbot with her mother Yesterday mum was a star at the Conservative Party Conference. Carers UK had asked me to participate on their behalf in a debate with Stephen O’Brien MP and Tim Hammond, the MD of Barchester Homes. It was chaired by Martyn Lewis (yes, the one you used to see on television every night!). It was great fun. I hope no-one could see my hands shaking!
Just before the debate Terry Pratchett, the author, spoke. He has just been diagnosed with Alzheimer’s and is using the energy occasioned by this to campaign on behalf of those with the disease. He has donated £1/2 million to Alzheimer’s research. I was uncomfortably aware of him as I spoke. I didn’t pull punches about mum’s condition: how dreadful to have to listen – in public – to a graphic account of the nightmare to come. A brave man (and fun too, as I discovered over drinks afterwards!)
I started by showing a slide of mum aged 17, the one in which she looks like Catherine Zeta-Jones. I think it is important to remind people that she was once young, vital and full of dreams. Then I showed them a picture of mum now. As I spoke they could see both pictures.
First I told them about mum’s condition, describing everything from her joyous sense of fun and her love of children, to her weeping and desperate desire to die. I talked of her incontinence, her need to be fed and her inability, now, even to dress herself or construct a meaningful sentence. Finally I talked about being mum’s carer; the sleepless nights, the despair, the guilt, the tears and the pain as well as the love, laughter and joy. I’d like to think there wasn’t a dry eye in the house!
Afterwards lots of people came to talk to me. Everyone spoke of their mum/dad/aunt/granny. So many people, so many personal tragedies.
But so telling. The fact is that the end of life, with all its woes, is part of life. Few of us will escape untouched by the need to care or be cared for at the end. Sometimes, sadly, as with Terry, before the end.
Yet as every carer knows to become a carer is to become invisible.
Invisible, helpless and, all too often, hopeless. How can this be? How can even the most minor ‘celebrity’ command more column inches in our newspapers than this army of people who – unpaid and unlauded – are doing one of the most important jobs a person can do?
I hope the fact that at least one of the main political parties is addressing the issue is a sign this might change.
But I don’t think I’ll hold my breath.