Thursday, 23 September 2010

Helen & Aimee's Life with Type 1

I thought you would like to read Helen& Aimee's story. I have recently made a new friend, who without really knowing me, has helped support our Diabetes Power Event

Helen Kerins,

Northern region Area Team Support Officer, has two children aged 11 and 9. The younger, Aimee, has type 1 diabetes. Here Helen speaks candidly about her experience as a carer. Carer’s week (external link) runs from 14 June.
‘I don’t want to do these injections any more, Mum…’
What do you say to an increasingly independent nine year-old in response to this? Helen simply found herself thinking, ‘You have to do this for the rest of your life…’
When Helen says this the emotion in her voice is obvious. This is the only time, however, during a half-hour interview that Helen isn’t stoic – in the real sense of the word – about her situation.
When Aimee was three she became very ill, very suddenly. After rushing her to hospital doctors told Helen that Aimee had type 1 diabetes. ‘We spent two weeks in hospital trying to get her sorted and since then it’s been a complete and utter roller coaster!’ says Helen.
Helen’s immediate reaction was probably the same as most peoples’ would be. She feared for her daughters’ health and ultimately her life. ‘It’s obviously been hard at times. To think she’s now nine and we’re only just starting to get past seeing to her in the night,’ says Helen. A shocking thought for any parent who fondly remembers getting their sleep back after about two years – at most. Helen makes no bones about it being tiring, but says, with no wish for sympathy, ‘You just get into a routine and get on with it, you know.’
Amiee needs four injections a day and now has an insulin pen which means she can do her own injections. This has given her a new lease of life. ‘She can go to sleepovers and to friends' houses for tea and that sort of thing which is great,’ says Helen. ‘She does still need constant supervision though.’
As Aimee’s grown up things have got easier for the whole family, but recently she’s had trouble stabilising her blood sugar level. This has meant more trips to the doctors, new medication and more upset and stress for the family and everyone else in Helen’s broad support network. ‘The support I’ve had has been invaluable,’ says Helen. ‘Amiee had a carer at school until about 18 months ago and the nurses have been brilliant: meeting the family and teaching them how to do injections and even going into school to talk to the kids.’
Helen is keen to point out how much her family, including 11 year-old Aaron, friends, the diabetes clinic her daughter goes to and the Audit Commission have helped her. Without this help Helen is certain that things would be different. ‘She goes into hospital for regular check-ups and although I always want to be there, sometimes it’s just not possible. But there is always someone willing to step up, which means so much to me.’
The other side of the support that Helen values is the role of the Commission. ‘I do nine-tenths now (one day off in every 10). And my flexible hours mean I can start later and take Aimee to school. I can tell teachers what she’s had for breakfast and what her blood sugar levels are like. Basically, I do the first part of the day, then family and school take the next bit and I come home and do the rest after work.’
Helen also recognises the role her line manager has played. She states with great certainty, ‘If the Commission hadn’t been so good I don’t know what I would have done or what my situation would be now.’
Helen and Aimee meet a bit confusion over the type of diabetes Aimee has. People can think it is type 2, the type connected to weight and diet. This doesn’t help the perception of Helen as a carer. ‘To an extent diabetes is a hidden disability – unless she’s unconscious of course – and I think some people sometimes think: “Well you’ve not got it that bad. Others have it much worse. She’s only got diabetes!”
Helen agrees that yes, they do, but that doesn’t diminish the severity of Aimee’s condition. Helen never thinks of her daughter as disabled and the whole family lead as normal a life as possible, but in reality…‘She could go into a coma at any time, she could go into renal failure. There’s absolutely allsorts that could happen in only a couple of hours so it is quite severe,’ says Helen. ‘I do think though people can think it’s not that serious and wonder why I class myself as a carer.’
The adaptations the entire family have made are extensive: from diet to holidays, diabetes affects their entire life and those of people around them. But Helen shows no bitterness with her lot, instead getting on with life for her, her daughter’s and the family’s sake.
Now Aimee is nine and developing her own mind – strongly! Having always accepted the diabetes, Aimee has recently begun to look at her peers and compare herself. ‘We know as she gets older she’ll start rebelling: not doing her injections and wanting to be like everyone else,’ Helen says with the air of acceptance any parent has as their child develops their independence.
But things are extra tough at the moment with the problems with Aimee’s blood not stabilising. Helen recently had to take Aimee to hospital to see if there is anything that could be done. She was told that they might have to fit Aimee with an insulin pump, which would be permanently attached to her body.
Aimee’s reaction when Helen and her husband spoke to her about it was typical of any nine year-old: ‘No!’

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