A Carer/Caregiver's Story

Hi. My name is Shirley. I am a carer or caregiver.

If you look at the Earth from outer-space, my village is just a tiny little pin prick in the small island of the UK on the globe. I am nobody special. Just another human living as best as I can like millions of others in the world. That's me in the picture above looking pretty happy with myself. It's me doing my job. I was happy entertaining people with my sister. We would sing our little hearts out and loved every minute of it. Alas, as we got older, the equipment we used just got heavier and I lost confidence with my driving so at the end of 2007, we decided to stop.

My job as a singer was my escape from my home life. If you look at the picture, you see a happy bubbly fun-loving girl. I certainly don't look like a carer or caregiver. (Although, what I we supposed to look like?) But away from the lights and the glamour, I lead a very different life. My husband is totally dependant on me. I have nursed and cared for him for thirty years. He used to be a fit and healthy young man until Multiple Sclerosis took both our lives.

I thank God I was blessed with a voice. This enabled me to work a few hours a week knowing he was safe in bed and would come to no harm.

There are thousands of carers looking after somebody who is disabled. Depending on what is causing the disability would determine where you can go for help and advice. There are many organisations out there ready and willing to help with any problems but they're not always practical.

As I have been a carer for many years, maybe I can help you with any problems that you may be experiencing with the person you care for. I will tell you what I did when encountering new problems and how I dealt with them.

When you are on your own with your "caree" things can happen when there's nobody there to help you. In the middle of the night was a favourite time it happened to me.

My husband Pete has deteriorated over this thirty year period. He is currently bed bound with a grade 4 pressure sore and cannot use three of his limbs. He can use his left hand to press a button to work his “Possum”. (This is an environmental control system and was installed by a company called Possum’s. It’s much easier to call it a possum). The possum button has to be placed within an inch of his hand, otherwise he can't reach it.

He has a stoma for his bowel movements and a suprapubic catheter for urine. This dilapidating disease has destroyed the best years of our lives but we have both had to deal with it as it has progressed. I am, and always have been, his main carer. We have both struggled with the different problems we have encountered over the years regarding his condition.

Most of my days consist of "fetching" for Pete. When he coughs or sneezes, his right arm springs across his stomach trying to contort. This is due to muscle spasm and unless his arm is "tied down" somewhere I am constantly moving it off of his stomach. I have to feed him his meals and give him his drinks using a special cup or a straw. He needs to drink at least two litres of water a day to keep the catheter flowing, so I am forever giving him drinks.

Pete's life is his telly and Chelsea FC.