A sliding-door moment
All my life, I have strongly resisted the suggestion of a carer. I have been comfortable with my routine, feeling like the number of professionals assigned to me already exceeds the severity of my disability. It is also one more thing that identifies me as being different to my able-bodied friends. Part of me has always linked 'carer' with 'babysitter'.
In October 2011, a friend encouraged me to attend a meeting of the Youth Disability Advocacy Service (YDAS). This was a
sliding-door moment that changed my life. Several of my new close friends from YDAS, including those similar in ability to myself, received the help of carers without fuss or fanfare. It was a classic case of being told the same thing repeatedly, yet only through the right circumstance and identification with the people involved, was I open to it. The greatest hurdle turned out to be my own attitude.
A heated discussion at home ended with my sister saying,
even if carers can only do 10 per cent of tasks to help Nick, that's at least 10 per cent less that Mum has to do. I understood the practical concerns, but I also thought that left to my own devices, my ability to weight bear and take steps at a rail could bridge the gap. Also, I knew that people with more restricted mobility than mine had managed to find ways around many issues without the intervention of a carer.
Would a carer help?
My auntie was a strong supporter of my independence. She sat in on a home visit with my occupational therapist (OT) as we worked through a list of steps needed to achieve my goals. At that time, I wasn't receiving the disability support pension, so it was suggested I try the local council. My OT rang on my behalf, and a trained nurse agreed to review my morning routine and assess whether a carer could help.
When the nurse came, I was careful to show what I could do. She gave some advice, and was confident that carers could be organised. I asked when, not being optimistic, and was very surprised when she said my first session with a carer could happen in the next week. We decided on sessions lasting 45-60 minutes, two days a week with my mum to help other days.
I now count them as friends
January 14 was the first day. It has taken several months to get into a settled regime. For example, I have changed my routine so that I am standing for less time, and therefore don't strictly need to wear my orthotic footwear. This saves considerable time.
My mother has been caring for me for 24 years, so having a new carer in the house was quite an adjustment. But when she felt comfortable enough to go out and do the shopping, leaving the carer with me – that counted as a success.
There was one carer with whom I was not comfortable, and I asked for a change. But overall I feel very comfortable with my current carers, and often debrief about my week with them. I now count them as friends in a professional context.
A reliable pattern
There is now a reasonably reliable pattern. Sometimes they might call and say the session needs to change, or ask if I would be looked after if a session were to be cancelled. If this happens, I don't mind, because I am living with my family and so have people around me who can help with my personal care. I do understand what faces others; I strongly believe that I should have a lower priority for carers than those who live by themselves and are relying solely on assistance.
I feel the process of using a carer has achieved its purpose. It has given me the initial, positive experience of having carers, and is a point of reference for when I move out. And now, that now feels like a very achievable goal.