Terminally-ill Littlehampton mum Mandy Paine has penned a heartfelt, highly personal letter urging families to be more open when it comes to talking about death.
Mandy, 54, has made her poignant plea not only to her own family, but also to her carer, doctors, friends and neighbours, as well as to the Prime Minister and to health secretary Jeremy Hunt.
Her letter is timed to encourage a ‘Big Conversation’, the theme for Dying Matters Awareness Week, this week, promoted by charities Care2Save and the National Council for Palliative Care.
Former singer and music teacher Mandy was diagnosed with chronic obstructive pulmonary disease in her early 20s. She writes: “It’s time we talked. For 16 years I have known I am terminally-ill. I’ve had to come to terms with the fact I won’t grow old with my husband, or see my grandchildren become teenagers.
“I’ve seen my body change; slowly, I am wasting away. I have faced the mental struggle of being told I’ve 18 months to live, only to see myself outlive the prognosis.
“I take 38 tablets every single day and rely on an oxygen tank to be able to breathe. My spine is crumbling; I’ve already shrunk by two inches. My skin is covered in painful psoriasis, and I have a growth in my stomach equivalent in size to that of a 30-week pregnancy.
“And yet, despite this turbulent existence, my biggest challenge is trying to talk to you about the fact that soon, I will die. There’s something about death that people can’t face. We thrive on life; we celebrate it at every opportunity whether it’s a birthday or a Christening. And yet, when it’s a certainty that everyone who lives will die, death remains the elephant in the room.
“This is a plea – to all of you – to start talking about death as much as we talk about life. Think of death as something you can control, where you can live out your last wishes safe in the knowledge that the ones left behind will be able to cope without you. Start talking to your children about death as a natural process, not something to be scared of. ”
She also tells the health secretary. “Please listen while I tell you I’m making the choice to die at home and not in hospital, because I’m so afraid I’ll lose control of my death if I’m on a ward.”
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