A CARER'S DILEMMA AND THEIR CONCERNS.

My wife has very severe MCS and I have been her full time Carer since 1998.

Back then, when she got too sick to stay home alone all day, I had to give up well paid job I had held for 25 years and go on a pension. Our income dropped to barely a third of what it had been before.

In the intervening 6 years my wife’s condition has continued to worsen. She is wheelchair bound and my wife would unable to look after herself of left alone.

She is a stage three MCS sufferer with permanent muscle and nerve damage having only about 25% use of her hands and unable to walk.

The situation is further complicated by her being an insulin dependant diabetic and now she needs help to administer her insulin due to her hand weakness.

Also, being wheelchair bound she is unable to get herself sugar in the event of a life threatening hypoglycaemic reaction.

Thus she cannot be left alone and requires someone with her 24/7.

In those 6 years I have never received any help or had any respite support.

Respite centres are far too toxic for my wife to even enter, let alone stay in.

Hospitals are even worse, (we just keep hoping my wife doesn’t get sick herself and require hospitalization!)

We have asked many times about emergency care if I am unable, for any reason, to look after her, but it is always put in the "too hard" basket! (We have no family able to help.)

We live in a semi rural area because my wife is far too sensitive to everyday chemicals to be able to live in a town with close neighbours.

The situation was highlighted in October 2003 when I was struck on the hand by a snake. I was getting wood for the fire and as I bent down to pick up a piece from the woodpile a snake struck me on the hand. The wound did not appear to penetrate the skin there were just two white blisters.

We rang Silver Chain in town give us some advice to see if they knew someone that could come and help look after my wife, if I went to hospital to be checked out for the snake bite.

I was fairly sure the snake had not got any venom in but as we live 100km from the nearest hospital we were both worried.

Silver Chain said they would not help with the respite care and that they wouldn’t take the responsibility of giving any advice about the snakebite because of public liability!

They called the ambulance even though I said don’t because I felt the risk in leaving my wife alone was greater than the risk I have been invenomated by the snake!

It was 4pm and my wife was due to have an insulin injection and a meal and if I went in the ambulance I would not be able to get back until the next morning! She is also very prone to hypoglycaemia in the night.

Reluctantly the ambulance officer told us the symptoms to watch out for and I had to sign a paper saying I had been advised to go to hospital and refused.

We had a bad night worrying and staying up in case I showed symptoms. Luckily that time it turned out alright.

Since then we have made many appeals to have the situation resolved and some emergency measures put in place but so far nothing seems to be possible.

We just keep hoping. Hoping I wont get sick or have an accident ___ and hoping my wife won’t get sick because she cannot attend a toxic hospital. We are both in our 50’s,  so it is doubtful our luck will hold out for much longer.

WE don't mean to discredit hospitals and such clinics; merely to point out these facilities because of the heavy use of chemicals are toxic to MCS Victims.

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