LIFE AS A CARER

This member wishes to remain anonymous

 

When I married in 1972, I had all kinds of plans for my life. I wanted a nice place to nest and have children with my husband. He had a good job, I had a good job, but I knew if I were to become pregnant, I would have to give it up. We were living with his parents but I thought it wouldn't be too long before we would find our own place where we would be happy and live happily ever after. (Every girls dream).

How wrong I was. Nobody would give us a mortgage and there was nowhere to rent, so we stayed with his parents. In 1974 his dad died of cancer, so we stayed with his mum who I didn't particularly get on with. Two years later in 1976, I gave birth to a little girl. I fell in love with her almost immediately and it was at this stage in my life my husband got his first symptoms of MS. He started getting pins and needles in his hands. When our daughter was 10 months old, we all moved from the flat in London to a three bedroom council house in the country. (His mothers house). After my husband had paint stripper thrown on his car, we had to get out of there and go private. By this time he had changed jobs and was earning a good wage. Anyway, we managed to get a mortgage and bought our own house on a private estate and lived on a hill. Steps everywhere, but a nice house. We took his mother with us because she helped us a little with the deposit and she didn't want to stay on her own.

In 1978, our son was born. A little girl and boy, a nice house, car. What more does anybody want? When our son was a few months old, my husband's leg collapsed under him and he fell over for no apparent reason. Cutting a long story short, he underwent all the tests, Lumbar Puncture, ECG etc to rule out what it WASN'T. He would get better but wouldn't be quite the same as before. He kept getting attacks and he would have ACTH injections which made him feel better. But after each attack, he was that much weaker. He got to the stage where he had to give up his job and would crawl around the house refusing to go into a wheelchair. He wasn't told for two years that he may have multiple sclerosis. He became agoraphobic and didn't go out through difficulty and embarrassment but had to go into a wheelchair eventually.

There is one instance that will stay with me forever. We went to see my mum and he had to hold on to me so as he didn't fall over. He was mocked by a group of youths for doing so.

We had to find a bigger house now, because the children were getting bigger and his mother was still with us, so we needed four bedrooms and somewhere with no stairs. Luckily, we found one and still live here. I got cleaning jobs until they were coming out of my ears to try and make ends meet. His mum was also getting older and weaker and had a heart attack and was left with angina. My husband, by this time, had gone right down hill and I was helping him up the stairs every night to get to bed, having to lift him on to the bed after he crawled from the top of the stairs to the bedroom. He would heave himself up with his arms and I would pick the bottom half of him up lifting him on to the bed. If he needed the toilet, the same procedure would happen. This went on for about 3 years. He was getting more and more difficult to lift up the stairs so we had a room built on with a shower room downstairs where we moved into to sleep and as our bedroom. His condition was worsening more frequently. I was finding life extremely difficult. I was going out cleaning until 1.30 in the morning building it up to a business where I employed a few girls. But the hours were very long. So….I had a disabled husband, a mother-in-law with a heart condition, two young children, two dogs now (who needed walking at least twice daily. Guess who did that?) and run a cleaning business and keep house, do the chores, shopping, cooking, washing, mending, DIY etc etc. We were getting by but it was hard work for me. The children didn't get any holidays unless one of my sisters took them and money was scarce. My mother-in-law eventually had a massive heart attack and died which was so upsetting for everybody and something else we had to deal with.

My husband's disability got worse and worse. He now needed a catheter after using convenes for a few years that kept coming off and he was always wet and his bowel movements were awful as he lost the ability to push because the MS was now going to the later stages. He would stay on the toilet for 3 hours sometimes wanting to go but unable to. We had to get homecare in to help him wash and dress. I was still doing everything else for him. He once developed a pressure sore so bad, he lost 4 stones in weight and was admitted to hospital for 3 months and had to have plastic surgery and a new blood channel in his bottom. He now has to go to bed every day to prevent this from happening again.

I had now given up the cleaning. I was getting older too, and it was just too much. I didn't get much sleep because there was always too much to do.

Eventually, the children left home and found their own lives. I am still looking after my husband who now has an electric wheelchair, a ceiling hoist to get him to bed and up in the morning. He has a stoma for his bowel movements and a catheter for urine so doesn't need to use the toilet. Homecare come in three times a day and sees to his personal care. He has completely lost the use of his right arm and his left is very weak. He has to be fed as he can't hold anything now. He is also a smoker, so when he wants a cigarette, I have to hold it for him. He had a Baclofen pump fitted inside him that feels like a small tin of beans. This releases an anti-spasm drug that controls the leg spasms that used to throw him out of the wheelchair. He has a "Possum" (a control system) which is a button he can press to turn the telly over, switch the lights on and off etc. TV is his world and watching football is his love. I escape for a few hours a week doing something I love.

Much as I feel sorry for my husband's condition, I have been here for him doing everything I can possibly do for the last 28 to 30 years but get nothing in return. He is selfish, and speaks down to me a lot of the time, never thinking that I may need some sort of life, always thinking just of himself. (Although he is charming with everybody else - although it is said you take your grievances out on your nearest and dearest, but that fact doesn't help). We are like chalk and cheese, but I have stayed here making life as comfortable as possible for him. I actually feel like his slave as he really can't do anything and doesn't appear to appreciate me which I am now seriously beginning to resent. But there's nothing I can do. I have to stay otherwise they'll put him in a home and I couldn't live with myself if that happened. He went to respite for one week after years of social workers and doctors and family trying to get him to go, to give me a break. He went for the first time a short while ago when I was able to do some decorating which I couldn't possibly do when he is here, because he needs 24/7 care. Will he go again? Tomorrow is another day. This is what this carer's life is like.

 

 

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