*This story has been shared with Swindon Carers Centre to raise awareness of the complex challenges caring for a family member, friend or neighbour can bring. We have used a pseudonym, but all the facts remain correct as told to us.
Caring for my dad: How my caring role began
My Dad had always been a hoarder, and feel that I began caring for him when he asked me to help him sort his house out. It had got too much for him. He had filled it with junk and then, when full, had befriended a vulnerable woman nearby and was filling her house up too! Originally, the help that he wanted was not to clear his house, but to bring more things in. My first caring job was to try to get him to see that his actions were not leading to a good quality of life.
Other than my brother and I, my Dad had no other family and no friends, he had always been a loner. We had hardly lived with him as children, as we had been in care for a long period, so we had no great emotional bond. Things came to a head when, amongst his junk at his companion’s house, was an air pistol. Her carers saw him inspecting it, called the police and an armed response unit arrived and he was removed from the property.
Back at his house, it became so full, that my Dad tripped on the stairs breaking his hip and hitting his head. Whether it was the anaesthetic from the operation or a head injury, nobody knows, but when he came round, his behaviour changed. He always was eccentric and had a temper, but in hospital, he was abusive to staff and patients, (unless he was propositioning marriage to them!) and he threw full urine bottles and cups at people who did not meet his demands. No mental health illness could be detected, so no treatment could be given. In all, 60 incidents of aggression were recorded. He refused to engage with physiotherapy and only left his bed to go to the toilet.
I worked with the Social workers to discharge my Dad with a suitable care package. My brother and I rented him a ground floor flat and worked on getting his house cleared and sold. He lived about 100 miles away, so caring visits took a lot of travel time.
After dad’s discharge from hospital: Helping him in the home
Within a month of discharge, all the agencies involved in his care had withdrawn because of my Dad’s behaviour. The doctor would only attend if the police were present and a male social worker was the only person who was prepared to visit once a week. This put a lot of strain on my brother and I, as we took it in turns to visit at weekends, to try to bring in food, clean and wash him. We were verbally abused if we did not immediately do as required – or if we only offered to help to get him into the shower, using a shower seat and not the bath. One person lifting him would have been dangerous. The social worker was patient with him, but could come up with lists of things needed by my Dad and would imply that I should be visiting more to sort them out as it was my responsibility. I felt guilty that I was not doing enough.
Soon, my Dad could not get out of bed as his muscles became to weak. He use to save up his urine in milk cartons and collect his faeces in newspaper. My brother or I had to clear this up at the weekend. I called in psychiatric services to reassess him and the Social Services hired a Consultant Behavioural Psychologist to try to manage his behaviour.
According to my Dad he did not want help, and wanted to live the way he was. He didn’t want to move to a residential home. The psychiatrist could not find anything wrong with his rational thinking or intelligence, and believed he just had a personality disorder, so again, no further help could still be provided. There was, and I believe still is, no residential help for people who have a personality disorder. Any talking therapies available could not be accessed due to the risks to the staff and my Dad not wishing to engage in them.
I was then called to an emergency meeting at Social Services. The NHS had just been given powers to issue ASBOs to violent patients. My Dad was going to be given the first such one and it would be in the national TV news and in all the national papers. I was so embarrassed that the shocking conditions he was living in would be revealed and I broke down as I did not know how to cope. The Consultant Psychologist told me that my brother and I could totally withdraw from my Dad’s care and we had no legal obligation to him. She was also trying to persuade the NHS not to issue the ASBO. This was a defining moment for me, when the whole burden of emotional and physical responsibility was lifted from my shoulders. I felt empowered and in control of may caring situation that had previously been so difficult to manage.
Taking control of my caring situation: Caring for my own mental health
I went straight to my Dad’s flat and said that I would no longer be able to visit unless he was prepared to move into a residential home that could meet his needs. He said he would think about it, and I said I would ring daily, but definitely not visit. My brother also took this strong line. It was a great relief as well that the NHS decided not to go ahead with the ASBO.
Soon, my Dad was ringing to say he was running out of food and I needed to come to help him. It was a heart wrenching decision, but I said I would not come, but I would ring for an ambulance to take him into hospital so that he would have the immediate care that he needed. At first he refused, but after a few days of calling me repeatedly he agreed to me calling for help. He was taken into hospital. It took six months to try to find a nursing home that could meet his challenging behaviour, He stayed on the ward at hospital throughout this time, refusing to get out of bed.
I found a care home for my Dad in Swindon that would take him, so at least if I visited and he was aggressive and I had to leave, it was not a 200 mile round trip. Unfortunately just before he was going to be transferred, he had become so weak that he died.
Caring can engulf people emotionally and physically, so I believe that a lesson from my experience is that carers have the right to take control of their own lives and should not be judged on the decisions they make about whether to care or how much they want to care.
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