There is food on the plate. The problem is getting it in to my mouth.
There is something horribly humiliating about not being able to feed yourself. I can manage certain types of food for a short while, until my arm tires too much. My right arm can take over briefly, but I am left-handed and my right arm has never been as strong as my left. The food simply tips from the fork before it reaches my mouth. Polly has had to help me in recent weeks, literally spoon feeding me all or part of my meal. She does this with typical good humour and grace but it is not a long term solution. The Occupational Therapist (O.T.) has suggested a Heath-Robinson type device that fits to the table called a Neater Eater, but frankly I'd rather starve. I think the solution, at least in part, lies with finding the right kind of cutlery, and so I am currently seeking a place to try out a range of knives and particularly forks in the hope of finding the exact right ones. How hard can that be?
The biggest challenge presented to Polly and myself in the face of my changing condition is normalising it for the children. We try to minimise any anxiety or frustration we may be feeling but it is impossible to hide such an obvious deterioration from them, and nor would we wish too. But we really don't want them worrying, they have enough on their plates. Matty is currently learning his lines to play Henry VIII in a play to be performed next month. I don't want their childhood blighted by anxiety about me. It is a tricky balancing act, being open and straightforward about how things are, and not giving them cause for undue concern.
Meanwhile, life goes on. The van has been repaired after its run in with someone's tow bar. The wheelchair ramp had been damaged badly and you can't weld aluminium. Fortunately the ingenious body shop man found away of bolting things back together. Also, Godfrey, my regular carer, is back after a period of sick leave. A new era with a degree of consistent homecare has begun.
And finally, for some reason Sam was saying the Lord's Prayer last night. Apparently it begins
Our Father, who aren't in heaven
Hello be your name.
Now, what's for tea? Soup served in a colander and eaten with a fork with any luck.
I know all about not being ablem to weld aluminium - a few years ago one arm of our caravan drawbar, or A-frame as it is known, fractured after years of use & an obvious fault. Problem was were towing it at the time! Thankfully we were only 2 miles from home so were able to get it back there without too much difficulty. But then came the challenge of repairing it! It CAN be welded, but only if you can fully clean it and put it in a sealed environment with special gasses - not possible without dismantling the caravan completely!! So I, too, resorted to bolting it back together, with additional aluminium angle both sides and plenty of Araldite. Four years on it is still being towed, so there is every chance your ramp will be fine for a long time to come, Stephen: I doubt the stresses on that are as high as on a caravan drawbar!!
ReplyDeleteIt's difficult to know what to say mate...it must be getting as frustrating as hell.
ReplyDeleteI for one (and I know that Bassbin is in agreement) still do not really see the wheelchair and the struggles there on....we still see 'the man', with his dignity and pride, humour and courage.
You are mate, an inspiration......and that is bloody infuriating.....the only one to get a record on top of the pops and now a ruddy inspiration....and I bet you could still thrash me in swing ball...git!
I stand with you and the food....my wife keeps threatening to buy me a bib and feed me as well....and I am (as they so eloquently put it) able bodied.
Right, I'm off to sponge the Spaghetti Bolognaise off of my white dress shirt.
God Bless Buddy