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A Carer's Tale The value of unpaid support that carers provide has now reached £87 billion a year according to a new report by Carers UK – more than the annual total spent on the NHS, which stood at £82 billion in the year 2006-7. Carers though are never appreciated enough nor valued by society or the government.. Being a carer is a selfless act. Tony Rhodes writes a wonderfully thought provoking piece on his experience as a carer for his mother. Tony promised his mother she would never end up in a care home. He kept that promise. The Carer’s Reality My mother had become bed bound due to various factors. The first and most serious were the pressure sores that the district nursing service failed to notice. They had started to come to our house a couple of times per week when my mother developed serious arthritis and could not get about so much. She was also prone to leg ulcers. The resultant pressure sores put her into St. Thomas' Hospital London for nearly six months. The sore that she developed was on her coccyx a common place for pressure. The district nurses had not been checking on this even though my mother had complained on several occasions that her bottom hurt. She developed a high temperature because she had got an infected pressure sore. The consultants at the hospital could not believe how the district nurses had not reported this earlier. She spent many months in hospital and nearly died twice through blood poisoning. She contracted MRSA (Methicillin Resistant Staphylococcus Aureus) twice and was very ill. While in hospital, she also suffered with malnutrition, yes malnutrition! She nearly lost five stone, which is astounding. The malnutrition was caused by food being put out of my mothers reach, staff not bothering to feed her, and the general lack of empathy for caring for someone elderly and helpless. This would never happen on a children's ward. When mum came home, I had special equipment installed because the OT, (occupational therapist) said that she would require such things - namely a hoist, a special hospital bed, a special alternating air mattress, commode etc. Mum was so happy to be back in her own environment, she started eating, she regained weight and generally she was happy. I noticed right away that being a carer for my mother would be harder than I originally thought. The support I was told I would receive was pathetic. The caseworkers that came to our house knew less than I did at first. I found that I always had to teach them how to care for my mother - sometimes they would not be able to use the hoist. My mother and I found that they caused more work and also I could not get a routine going. After a few months I took over my mother's entire care. She was certainly much happier and I was certainly much more confident in my ability to care for her. 24 Hours Non Stop Caring became a 24 hour a day thing, you could never say “I am going to bed at ten” because you never knew what mum would need that day. Sometimes she would not be able to hold on before I got her to the commode. There was the constant washing of bedclothes, her nightclothes etc. The washing was something I did by hand as I did not have a washing machine. Sometimes I felt like I was in a deep haze, a state between sleep and being in the twilight zone. I could fall asleep standing up I was so tired. I lost all contact with the outside world. The family that we had hardly ever came to visit and they never offered to help out or give me a break. Holidays became a thing of the past. The only break I ever had was when I was rushed into hospital for three weeks because I had a gallbladder problem. Mum was put into a respite home for that period. When I came home and she returned back from the respite home, she had got a pressure sore on her. All that bloody hard work, all that effort I had made seemed pointless. I was nearly in tears. “Poor mum”, I thought, “who can you trust”? I came to the conclusion that when it comes to elderly care you cannot trust anyone but yourself. She was never left again. The isolation that I felt was huge. I felt alone and I did not realise at that time there were carer charities or organisations that I could turn to for support. I did not have access to a computer and depression always hovered on my shoulder. The black clouds were never far from my thoughts. Fleeting ideas of suicide were often in my thoughts but then they would disappear because I could not bear the thought of leaving my mother to the abuse and neglect that she would surely have to endure by care home staff or care workers. I could never do that, never! After mum had gone to sleep at night, I would often break down and cry like a baby. I could not stop the tiredness, the guilt, the sadness, and the feelings of helplessness. Being ill was no escape because you had to work through those feelings. I even broke my hand once but still continued to care by putting the plaster cast in a plastic bag so it would not get wet. Carers have to learn to adapt, and adapt quickly. Over my years as a carer, I learnt a lot about my mother. Her childhood, her life during the war, the sacrifices she made for her family. When our elders become debilitated, we often forget that they once had an active life. History of the Past My mother was born in 1922. She was an identical twin. Being a twin would have implied that they had both been close but sadly over the years they grew apart. Their attitudes to life and people were very different, my mother had a compassionate side to her whereas my aunt was completely selfish and only worried about herself. Mum always said that she took after her father and her sister after her very strict Victorian mother. My mother was her favourite but in later years her mother came to rely on her for her care. Mum went to work in the Ministry of Health during the war. She said that she spent some of the happiest days of her life in that environment. She loved people and she enjoyed being part of a team. The ravages of war brought out the best in people, people helped each other, they shared, they grieved together, the nights spent in the underground avoiding the bombing of London, they laughed together, everyone helped everyone else out, today that ideal has gone. My mum married a pilot during the war in 1944. Later I think she regretted that although she did have three children. She should never have married my father as he did not enjoy family life and over the years cheated on and abused my mother terribly. He finally left my mother not long after I was born. She struggled to bring me up and there was always a shortage of money. My father never paid any maintenance but she never let us go without anything. My mother did a good job raising her children, she loved us, and we were privileged children as we had a kind and loving mother. Many kids did not. When I look back on my mother’s life I realise that I am very much like her. That's what people who knew my mother tell me. I have empathy and patience; I tend to want to help people if I can. Caring for my mother was an easy decision to make. I always told her I would not let her go into a Care home and I kept that promise. Opting for Heaven My mother officially died in St.Georges Hospital Tooting on the 26th October 2006. She had called out to me that afternoon and I came running down the stairs to see what the matter was. She was telling me she could not breathe and she was going blue. I was phoning for the ambulance and trying to perform mouth-to-mouth resuscitation at the same time. I was crying she was not responding. The paramedics arrived and put her on oxygen right away. She was still alive but not conscious. We got to the hospital and we were separated. They worked on her for what seemed like ages but then this nice consultant came out. He said that my mother did not have long and that there was nothing more they could do. They would make her comfortable but she was not aware of anything. I went and sat with her, told her how much I loved her and held her hand, stroked her face and kept on kissing her hand. Her breaths became shorter and shorter; about an hour and a half later she took her last breath. I screamed out. The pain was like nothing I had encountered before. She had gone and I was alone. I am very good at handling pain but that pain of losing your mother is like someone tearing out your very soul. In Grief I spent a few days with my sister after my mother’s death and I will always be grateful for her kindness. We are totally opposite in our views on my mother. I won't say anymore than that. Mums death changed my life in ways I never believed would happen. My sister bought me my first computer. I taught myself the basics and went on to build my own website. I started to contact other carers and ex-carers through various forums message boards. I started to help others with their caring problems and I found I could talk with people and listen to their problems. This in turn helped my grieving; some people had far worse problems than my own. My depression was bad but I always felt I had to help others when they contacted me. The anniversary of my mother’s death was just recently. I had time to look back and think about what I had learnt from my experiences caring for my mother. I realised that love is precious. I also learnt that given the same circumstances again I would do just the same. Finding Love Being this close to my mother during her final years has made me a better human being. It has made me open to other peoples love. I never thought that I would fall in love and I never dreamed I would one day get married. I came into contact with a wonderful woman who is also a carer. She cares for her mother as well. We have only known each other for nine months and we cannot be together just yet but we are engaged and plan to marry one day. We speak everyday on the phone, we write, we send each other parcels, we are there for one another, we love each other so much, without her my life would be empty and worthless. Since coming into contact with her she has encouraged me and made me realise I can achieve things. She has made me believe in myself, because of her support and help I started the National Carers Forum and also have run several campaigns - the latest one is to end pensioner /elderly malnutrition, we are also planning on writing a book together on our caring experiences. We feel we have lots to give to other carers. The Future Is Bright A year ago, I could not have imagined that I would have been able to sit down and tell other people my experiences. My future looks good and I still suffer with some medical problems relating to my caring role but things look much brighter. I would just like to say that even though the role of carer closed off a part of my life, it opened another. I would never of found it, if I had not been a carer. I would just like to thank my mother for the love she gave me throughout my life. She always believed in me, god bless my mum, one day we will meet again and have a few laughs. The one good thing I can take from this experience is that I have come into contact with a group that mainstream society and government have totally ignored and set aside. The majority of carers are a wonderful bunch of people; their self-sacrifice, love and empathy for others should be an example that others in this busy uncaring world could learn from. It is very sad that the six to seven million carers of this country have to suffer in silence. The majority live in poverty, most will develop some illness, both mental and physical, they will have less chance of work when their caring role ends and one of the worst things is that the government treats carers like modern day slaves. Carers save this country nearly ninety billion pounds per year but are given a carers allowance that can only be described as pittance. Getting carers a decent amount of money to live on is top of the priorities when you ask what carers need. The government will have to decide and so will the people of this once great country. Do we want our society to be regarded as a caring society or do we want to be left behind like third world countries when it comes to caring for our elderly and infirm. I think I already know the answer to that question. I am just glad I will not be around to see the results in years to come. Related Links National Carers Forum Petition Campaign Against Malnutrition Extract from the Mirror Forums by Tony Rhodes
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