‘Will you be all right when I die Mummy?’ The words hit my chest and stomach like a forceful kick. It was bedtime, we’d just finished story time, and I was tucking her in. Always a struggle, with the ventilator, bed rails, incontinence sheet, nigh time medication - not to mention the teddies. Everything had to be in the right place, EXACTLY the right place, or no one in the house would get any sleep that night.
Your child dying before you – that’s the wrong way around isn’t it? But a tiny little piece of me would think that it would be better. Because if I died first, who would know her enough to make sure her life was as good as it could be? Who would be her voice, her advocate, the person what would spend 4 hours or more, every evening, arranging things on her bed so that her OCD driven compulsions were kept at a minimum? Who would know the differences in her when her medication changed, and that the bad behaviour wasn’t her fault? Who would ensure her bed sheets were completely without a crease so that her immobile lower body didn’t break out pressure sores, who would communicate to the taxi driver, and school that she had had a bad night? And who would know what made her laugh so hard she couldn’t catch her breath.
Your child dying before you – that’s the wrong way around isn’t it? But a tiny little piece of me would think that it would be better. Because if I died first, who would know her enough to make sure her life was as good as it could be?
- Nicola Murgatroyd, MyLiferaft founder.
My disabled daughter did die before me. One cold, snowy January day. The same year, my father had a stroke, one which left him able, but not as capable to look after himself and his affairs as he had previously been. Having been a carer for 28 years, it was relatively easy to slip into the supporting role again. Help Dad apply for the allowances, arrange for rails in his house, speak with the relevant professionals, though the challenges to get the best outcome for him were the same as they had been for my daughter.
Ask anyone one who has been in a caring role and they will tell you the same thing, ‘Why is there not more joined up communication? Why is it hard to find the right resources? Why are there so many silos of information about me/my loved one kept everywhere, and not in real time, even in the digital age? It’s easy to find them, because one in three people in the UK are a carer.
My personal experiences gave me first hand appreciation of the challenges faced by people needing care. I couldn’t help thinking that there had to be a way of holding care related information safely, and to be able to share with other members of the family, and care team, which included a variety of organisations and individuals.
MyLiferaft. A digital platform that allows you to own, and store all of your healthcare information in one place, in as much detail as you want to. Designed to bring care back to the individual, while simultaneously keeping family, carers, healthcare and education professionals informed. MyLiferaft is a versatile and comprehensive tool, which gives people a voice in their care, and supports education, health, social care, transport, resources, risk assessments, and also plays a key role in supporting and maximising the benefit of other apps/platforms and digital health tools.
To create your own, go to www.MyLiferaft.com and click Try Now. You can set up your free lifetime health and care support tool, a must if need care and support from another, but a must for yourself too, as MyLiferaft can support you in achieving self-care, and staying well.