Brain Campaigner!

Special interest: Huntington’s Disease

My Dad, Dewi was diagnosed with Huntington’s disease in 2004, we knew that there was a chance that he would get the hereditary condition as his mother had died from it at the age of 65 in 1980.  My dad was a joker, the life and soul of the party. He was always the last one standing, loved playing the guitar and having a sing song. Those that knew him said he was that laid back he was horizontal. Loved his motorbikes, classic cars and sailing. He was one of a kind.

I moved back from Cardiff in 2007 whilst I was in the middle of studying to complete my MA.  My parents relationship was very volatile during this time, and I was constantly getting calls from social workers and police. This had been happening frequently since my Fathers diagnosis. He hadn’t taken it very well at all. My mum suffered from depression during this time, which I believe stemmed from living with my Father and his illness which was beginning to get worse. 

My mother at this time refused to allow carers into the house to care for my dad and make sure he was eating the correct foods as he needed a high calorie diet. He was undernourished and not in a good way. Due to lack of help from any of the necessary support frameworks I had no choice but to move back to North Wales to care for him. When I returned home, we planned for the future, I arranged for an outbuilding to be made into a purpose built house for my Father so he could stay at home for as long as possible, knowing the disease would progress only one way. Once this was complete he settled in well to the new house and I lived with him so I could care for him.

We employed carers to come in a few times a week to help Dad with washing and cooking and feeding. At this point I was working for a company. In 2010, my Fathers condition worsened and I had to leave my job, so I set up a business working from home so I could be there to support him and his needs, which had got considerably worse. We were having little support from social services which I believe was due to lack of competency and lack of compassion. Reports were written which were incorrect, and no solutions were offered.  At one point we had to apply for funding for care from the HD charity as the social worker neglected to inform us that my Father would be eligible for some money towards care. I was offered a carers assessment in 2010 and then nothing happened. I had to fight for everything alone.

In 2011 the situation worsened and no matter how many calls I made to the doctors and social services, no help was offered. I was unable to work at this point as I was caring for my Father full time, 24 hours a day. My father’s behaviour was challenging, not knowing what time of day it was, wandering, being doubly incontinent, trying to overdose on his medication, choking on food, refusing to wash, trying to make hot tea and drinking it as as fast as possible, not talking, being aggressive, and the list goes on.

Some days I wondered how I would continue and often thought that the only way he would get the support he needed and to be cared for properly would be if I wasn’t around. In April 2011 a district nurse was called in to complete a DST assessment, an integral part of being assessed for NHS funding. She completed an assessment for mental capacity and stated that he had capacity, but there was no evidence to back this up even though I insisted that he didn’t.  (A month later a psychiatrist declared him mentally incapable. )

A Nursing assessment was then completed. The district nurse told me verbally that he would never get CHC funding (NHS funded care) as he “wasn’t terminal enough” even though the HD advisor, dietician and occupational therapist all believed he should get full CHC funding.  On May 17th we requested another assessment as Dads need had changed again. This was never done and the original assessment was never put into the local health board for the CHC panel to assess.

An emergency care package was eventually put in place by the social services. The care companies that were put in to help were not coping with Dad’s needs (due to no fault of their own) and staff had no training. They didn’t know how to deal with someone with HD let alone deal with the challenging behaviour. In June 2012, bank holiday weekend, we reached crisis point. We got a doctor in and I had to do something that I wish to never have to do again- I had to put my Dad in a mental health unit because I could no longer cope. It broke my heart leaving him in a small, smelly cell like room, with another patient, wondering how he was going to cope with being in an alien environment as he liked routine and his own home. I cried for weeks- I had failed him, I had tried but I had failed. The notes from the unit that took my father in stated, “ he was underweight, smelly and dishevelled. ”

My Dad had to stay in the Ablett unit for 7 months, while professionals that understood the condition carried out a proper CHC assessment.  As soon as that was done he got CHC in July 2012 (only 2 months after we were told he wouldn’t be eligible)  and we had to find a suitable care home that could cope with his needs. This took a long time as there were limited spaces available and finally in December 2012 he got placed in a care home. This home went above and beyond with the care that they gave my father. They had a happy informal atmosphere, which suited Dad perfectly, the staff were warm, friendly and took to him Dad immediately, even though he caused chaos around the place on the hunt for chocolate.

It wasn’t all sunshine and roses, Dad’s condition got worse, he couldn’t speak and was starting to become more and more agitated, he had no quality of life. He didn’t want to live any more and in January 2014 on my birthday, he tried to kill himself by bashing his head against a sink unit until it crashed from the wall. It took 5 careworkers to pin him down as he had an unimaginable strength that came from nowhere. The police were called and they had to tranquilise him to calm him down. He ended up in the local hospital- here as usual they had no idea of how to deal with his condition.  They put him on a normal ward where he caused chaos- the staff couldn’t cope with him, I got endless phone calls and CHC also cut his funding, taking away his care workers that he was used to from the care home. Again I had a battle on my hands to get the CHC reinstated.

I struggled for years looking after him, the last few months I cared for him were the hardest time of my life. I was suffering from exhaustion, anxiety and was very stressed and my business suffered.  If only some of the health care professionals had listened when I spoke, but they let me down, they let my Mum down, but most of all they let my Dad down.

My Dad sadly passed away peacefully in the care home in March 2014 listening to his favourite Bob Dylan cd.

My driver to being involved with this campaign is to make sure that people don’t suffer in the same way my family did. I will be working with Emma to make a positive change, raise awareness amongst professionals, and work to get more appropriate assessments for Huntington’s Disease patients.

I now have a son, Flynn, and I want to make him proud.