INDEPENDENT LIVING
I had a plan. I would study hard at school, get a good job, meet a nice woman and live happily ever after. It was pretty much the same plan as many young
people I suppose although by the time I reached my 40s I was a little more worldly-wise having seen many a fairytale wedding end in the nightmare of divorce.
Therefore at school the daily half hour of physio appeared to be a painful waste of time. I wanted to be learning things that would increase my chances of
employment. I expected to find a wife who would dote on me just like my mother; someone who would care for me and attend to my physical needs. The
problem is all the women I have met were looking for a man to dote on them!!!
When I reached 30 and found myself still living with my mother (dad passed away when I was 15) I wondered about the future. What would happen when she
was no longer able to attend to my needs? A social worker came out to perform an assessment and she calculated that the cost of providing a level of care
equivalent to that given by my mum would be £1,000 per week. She hesitated before announcing at that rate the care would likely to be given on a residential
basis (this was 1997 so things may have changed since then).
Residential care is not necessarily a bad thing but, given the choice, I think most people would prefer to live in their own home. I decided to make myself as
independent as possible to reduce the amount of care that I required. I didn't know if I could make any significant difference but if you don't try you don't get
anywhere.
The first thing I needed was some space. I knew if I tried to do anything for myself my mum's instincts would take over and she would be there helping me in a
flash. Thus we performed some modifications to our home, knocking two rooms into one to create a "bachelor pad".
While my mum was tolerant of all the motorsport and football that I loved to watch on TV, I think we both revelled in our new found freedom with regard to
viewing decisions.
As soon as the room was completed I put in a request for a powered wheelchair. I had one at home 10 years previously but used it so little that I handed it back.
I would come home from work and sit infront of the telly while my mum fluttered around me. What a slob I was!
Roughly 6 months passed before the new wheelchair was delivered. In the meantime I did a little experimenting to find out what I could do. I still remember the
look on my mum's face that said "Just what are you trying to achieve?" when she walked in to find me with my T-shirt off after I had pulled it over my head. What
she didn't know was that this small success had finally come after 4 evenings of trying!
When the powered wheelchair arrived I soon learned to get in and out of the armchair. This enabled me to come and go whenever I wished although it was a
culture shock to my mother after 35 years of always being able to find me where I had been left!
Having practised dressing/undressing prior to the arrival of the 'chair I was soon able to get changed and put myself to bed. (So long as I was not wearing
clothes that required buttons or zips to be undone.)
Best of all I learned to adjust my clothes and get on & off the toilet. This is probably the most liberating achievement as it means I don't need someone around
incase I get "caught short". It has given both my mum and me lots of freedom. Social services also provided a Clos-o-mat "wash and blow" loo which relieved my
mum of a most unpleasant task.
Oh yes... I learnt to close the curtains too! It's seems a small thing but I never dreamt I would be able to do this.
By now it seemed as though nothing was impossible. As it took an hour to be fed a meal, this was the next area to be targeted in my quest to reduce my care
needs. In hope rather than expectation I searched the internet for a foot-operated feeding aid. I found one called the Neater Eater.
Social services agreed to fund one if a trial was successful. To my delight, and the amazement of my mother, the engineer managed to adjust the device so that I
could use it quite easily.
I now feed myself whenever it is practical - which equates to 80% of the meals at home. I prefer it as I can eat at my own pace. Life is much easier for my mum
as she can begin the washing-up while I finish eating. It also means she can leave me some non-perishable supper (usually chocolates) while she enjoys an
evening out with her friends. It is on these occasions that the scale of my independence is realised.
This leaves showering which is the one aspect of my personal care that I have yet to "crack". I have tried using sponges on sticks but these soon fall apart.
The latest technology that is available on the High Street has also aided me in the quest to take greater control of my life. I can operate the TV Remote with my
toes. A hard drive TV Recorder means I no longer have to ask my mum to load video tapes and putting all my CD's on the computer enables music to be
selected without asking her to find the disc I want to hear.
All this activity has strengthened my body dramatically. I have developed some pretty impressive biceps! While others are losing their faculties as they reach
middle age I am gaining them. In many instances each task I master unlocks other possibilities.
For the first time ever I am willingly performing exercises, largely to keep fit and stem the ageing process. Once a day I hold on to the bar next to the toilet and
put weight on my legs. Recently I have built up enough strength to let go of the bar with one hand. I feel close to momentarily being able to stand up unaided -
how cool would that be?
But I can't progress as fast as I wish, if I over-do it my muscles become stiff; particularly those around my pelvis which I have never used before. On occasions
they have become so tight that I can hardly move with the result that all my hard won independence is relinquished. It's very much a balancing act; I'm trying to
improve without pushing my body too far.
So do I regret not being a more enthusiastic subject for the physiotherapists at school? If I knew then what I know now then my attitude would definitely been
different. Had I done more when my muscles were supple earlier in life, who knows what I could have done with my wayward limbs. But I was never really
concerned about being disabled (I'm still not) and so I didn't have the motivation. Only now can I see the possibilities on offer.
However I tend to prefer to have one big objective to aim for. When I was young it was to obtain the qualifications necessary to get a job and now it is to live as
independently as I can. I am not sure I would have been able to cope with tackling both goals at the same time.
