Gauchers News Contents
Gill's son Jon has Gauchers disease. In September 2001 he started university. He has been receiving enzyme replacement therapy since he was 11 years old. How does he manage his infusions away from home? Gill explained how she handed over this responsibility, at the Gauchers Conference in November 2003. This is her story:
Jon was diagnosed when he was 5 years old and began receiving enzyme replacement therapy at home three times a week when he was 11. This routine changed a few years later with infusions given once a fortnight.
September 2001 and seven years later, Jon started university . When I am asked how Jon manages his infusions, I reply: 'He sorts it out - I have nothing to do with it. But I can tell you how we got from me doing it all to me having no responsibility.
I call it the hand-over of power. It ended with a Box In a sense it ended with a big cardboard box in which I packed all the medical equipment for Jon's leaving for university aged 18½. But the hand-over started much earlier, on a long journey from adolescence to adult, from age 11 to 18.
Jon aged 11: Home infusions - getting used to them and regarding them as normal. He with his younger sisters loved to swing on the new toy, an ex-hospital drip stand. How do you disguise a heavy-duty non collapsible black drip stand? We decorated the downstairs bathroom into a desert scene, pushed the drip stand in one corner and hung above it a crown of green paper palm leaves. There it stood, masquerading as a palm tree in a designer bathroom.
Age 12: the first step of handing over responsibility was the hardest. The arguments, upsets and tears were heart breaking. I'd do everything else but I insisted that Jon chose which hand we would be infusing. For this Jon got his choice of TV or video and a can of Pepsi. Both significant treats in our home. It was tough love.
Age 13: the map book. Jon and I named his veins, there was old faithful the crossroads, the M6, Tiny Tim and many more. Old faithful hardly ever let us down, M6 was a big vein. There was concern infusing three times a week that some of his veins might become unusable and that it was best to ring the changes to allow recovery. Jon's job was to tell me which vein to go for.
Age 14: I stopped saying when we were going to infuse. The infusion rate altered from three times a week to every two weeks. Jon had the respon-sibility of saying which day and time he wanted. He did need a gentle shove now and again and at 14 not every-thing was sweetness and light but I was determined that the rebellion would not be about infusions. It was important for me that Jon took control over this aspect of his life and that I fit into his time-table. I encouraged Jon to speak and ask questions at his hospital appointments.
Age 15: bribery was quite effective. With list in hand, (so he knew what was needed) Jon earned money by getting out all the equipment, setting it out ready for me, and then putting it all back after the infusion. I went in with Jon for hospital appointments, but only spoke if absolutely necessary.
Age 16: stock control. I taught Jon how to order the equipment, showed him the Healthcare at Home book, encouraged, nagged, supported until at last he took this on. Healthcare at Home were great in accepting that Jon was being asked to pick up this task and would phone and phone until they got the order ... from him! He started to attend hospital appointments without me. I was only the chauffeur.
Age 17: Jon learned the aseptic technique for reconstituting the drug, then used this every infusion. He was trained in the local hospital at my request. He attended hospital appointments without me.
Age 18: Jon organises his own medical supplies, both at Sheffield where he is a student and at home during brief holidays. I understand he is a favourite with the medical centre nurses who make him tea when he turns up fairly regularly to do his infusion when it fits in with his timetable. Tracking Jon to attend regional centre appointments, MRI scans etc is more difficult. I have found that texting him on his mobile phone is a way of creating convenient appointment times.
Did we get it Right?
So, did I gauge it right? Who can tell for sure but here are three sources to support me:
I asked Jon to help me and he remembered more about the can of Pepsi than he did of being upset. His words to sum up Gauchers disease and infusions: 'It's not a big thing.'
I am now qualified in youth and community work and I see the majority of distress in adolescence marked by an inability to have a sense of control in difficult situations.
'An effective transition programme must recognise that transition in health care is but one part of the wider transition from dependant child to independent adult. The aims of preparation are to provide education and to allow the individual to develop the skills necessary to manage their illness.' That quote is taken from the Autumn 2003 Share An Idea magazine from Contact a Family entitled Transition from Paediatric to Adult Care.
Like many parents up and down the country I made sure my child had developed the skills for independent living. Jon went to university knowing how to shop, cook, wash clothes, iron, get up on time and slightly more unusual I'll grant, how to manage his infusions that keep him well.
Gill Greenhalgh is a member of the Gauchers Association's Executive Committee and advises on government benefits.
Gauchers News Contents
Source: Gauchers News March 2004.
© Copyright Gauchers Association 2004.