Jason 36 years old and Sonia 42 years old
Sonia May 4, 1972- September 5, 2014 Jason July 24, 1973- October 16, 2009
Jason’s father had told me that his father had Parkinson’s disease, whom had passed away in 1970 in what we now know to have been a mental hospital/institution.
Jason’s father and I separated when Jason and his sister (Sonia, 14 months older) were still very young due to his abusive behavior towards both myself and the children.
As a child Jason was shy and lacked confidence, he struggled with school work and needed remedial lessons to keep up with the other children. He suffered from Asthma and this held him back at times. He occasionally had temper tantrums but never uncontrollable, he was also loving and affectionate. Jason was a quiet boy and found it difficult to mix and make friends therefore he had very few close friends as he grew up. Being quite shy he only had a few brief relationships with girls.
As a teenager Jason participated in the usual youth activities i.e. Youth Clubs, T.A., Paper round etc. He left school at 16 with no formal qualifications so started a YTS (Youth Training Scheme) to learn mechanics. He became frustrated with this as he didn’t feel that he was getting anywhere and struggling financially as he could not afford the usual teenage lifestyle (clothes, clubbing etc.) and would spend most of his spare time playing computer games. He eventually gave up the mechanics training and took up another YTS in butchers shop. By this time his temper was getting more uncontrollable and this started to impact on everyone around him mainly myself and his sister, his work life and his friendships. He could no longer hold a job down and moved from one training job to another.
It had been many years since anyone had seen or heard from Jason and Sonia’s father, however, it was around this time that Sonia said she had seen her father whilst she was working in the City. She said he was being pushed in a wheelchair. I queried how she knew it was him after all this time would she recognise him but she was adamant that it was him. We thought maybe he’d had an accident or maybe it was an illness (bringing to mind what he’d told us about his father) we’d probably never now so we put it to the back of our minds.
Jason’s behavior was now becoming more irrational. He would fly off the handle at the slightest thing, smashing things in the house and even physically assaulting and threatening myself and his sister. After one particularly bad outburst, I convinced Jason to come to see the doctor with me. We discussed the situation with the doctor who asked Jason some questions. Jason told the doctor he loses his temper too easily and he didn’t know why. The doctor suggested that Jason be given more responsibility and that being a teenager he needs to start becoming a man. I think what the doctor was really saying was that as a single mum and with no father figure around this is what happens. Needless to say, I came away feeling responsible for everything. The next few years were extremely difficult, Jason was getting more and more out of control and more worryingly he didn’t seem to understand the consequences or care about his actions. Eventually he stopped working altogether. He began to lose interest in himself and it became a battle to get him to bath, change his clothes or take any pride in his appearance. At the age of 19 Jason left home. I knew deep down that he would not be able to cope but made myself practice some tough love and not be at his beck and call as I thought this would either make him or break him. He could not cope and after he nearly got himself shot by a gang of youths that he had upset, I stepped in and helped him sort out another move. Things continued much as before and Jason kept getting into difficulties which I would usually sort out for him. As time went on Jason was becoming more apathetic it was clear to everyone else that he was not able or willing to look after himself. I was slowly helping him more and more without realizing I was actually caring for him, I just knew that something was not right but didn’t know where to turn, what to do or who to see.
By this time Sonia was living with her partner and they had begun to experience problems. Sonia had started an NVQ in care course but she was not coping with the written work and finding it unusually difficult. She had always been very capable and could have done this standing on her head. She also told me that she had become very clumsy and her leg was buckling when she walked. The alarm bells started ringing in my head at this point but was at a loss as to what to do. Shortly after this Sonia fell pregnant and after the birth of her son she seemed to deteriorate. It was now vital that we sort this mess out.
Remembering about Sonia seeing her father in a wheelchair and now suspecting that his father may not have been suffering from Parkinson’s as we had been led to believe, was the only information that we had to go on. So when Sonia went to see her doctor she explained what she knew and her symptoms. The doctor concluded that there were at least 4 illnesses that were possible and that she would have to find out which one before he could treat her.
We set about trying to find out – her grandfather had died over 20 years ago so there would not be any records of him so we needed to find her father. We had no idea if he was alive or not by now. We went on the assumption that if he had been ill, he would have died by this time so Sonia and I (Jason was not aware of any of this) went to the register office, equipped with no real facts except her father name and dob.
The lady at the desk said they would not be able to help unless we had the date of his death. We explained our predicament and she said that they could do a search 2 years either side of a date but without a date they could not do this. We sat outside and contemplated our options and came up with only one solution which was to guess a date and hope for the best. If this did not work then god knows what we are going to do, he may even still be alive. We worked from the year that Sonia had seen her father in a wheelchair and added a few years on. We came up with the guess of 1992. We submitted our application with this as the date of death and waited. After a while, the registrar called us through to a side room and said that the search did not turn anything up for the year 1992. We explained the importance of finding this information and the registrar said she would continue the search of 2 years either side of this date. We waited again and this time the registrar appeared with the documents we needed. The death certificate cited Huntington’s disease as the cause of death and pneumonia as secondary. Reading those words that day will haunt me forever. We didn’t know what HD was but he’d died because of it and our fear was that both Sonia and Jason had this.
We stopped at a bookshop on the way home and found a medical book/dictionary. The book only described HD in a couple of paragraphs but the words “a genetic, degenerative, neurological disease” and “each child of a sufferer had a 50/50 chance of inheriting it”, jumped out of the page at me.
Unlike myself, Sonia was incredibly calm and her strength got me home that day. I now had to go back and break the news to Jason. I had to tell him his dad was dead and what had caused his death and also that it was possible he could also have the same illness. He took the news surprisingly well much like Sonia had. I didn’t go into detail about Huntington’s (and at that time I didn’t know that much anyway). He didn’t say much, no questions asked, just seemed to accept it but by this time his mental capacity was impaired and he had been having problems processing new information. I hoped he understood.
Sonia and Jason’s doctors referred them to the geneticist for the all important tests. Whilst we were waiting for the appointment to come through, I did some research about HD mostly through the internet and books on the subject, to try to prepare us for what might be to come.
Prior to the hospital appointment a genetic counselor made home visits to both Sonia and Jason. She asked questions about the family history and gave us some information to prepare us for the tests and the possible results. It was a very emotional period for all of us and although deep down I knew the outcome, I still clung to the small hope that I was wrong.
Jason’s appointment came first. The neurologist gave him a thorough physical examination followed by a blood test which he explained would take about a month for the results. However, he went on to explain that the blood test was just a formality and that his physical examination of Jason told him that Jason had Huntington’s disease and the blood test was just to confirm this. My heart broke for my son that day. There was lots of tears and sadness for many months to come. I suppose, in a small way, it was a relief to finally have the proof that there was an actual medical reason for all my son’s problems and that it wasn’t all down to his personality or his dysfunctional family and upbringing.
I tried on many occasions to engage Jason in discussing his feelings but I could never get him to open up and talk. All he said was that he knew before the results that he had it; he knew he was going to die but didn’t want to know any more than that.
Initially we received good support from the Regional Care Advisor of the Huntington’s disease Association who put us in touch with our local support group. The Support group meet for a couple of hours every other month. Sonia and I attended the meetings and it helped to meet other people and professionals affected by HD. I think Jason thought that he might hear something he didn’t want to know and this scared him.
We had involvement with Social Workers of which there were many. None of which seemed to have any knowledge of HD, its symptoms and affects and struggled to understand the complexities of the condition and some not even the basics. I was constantly trying to educate them about it but never quite managed to get the penny to drop before a new one came along and the process would start all over again. We found even GP’s new very little and would ask me to explain things more clearly for them. My own GP would bring his medical students to my home to get some insight into the illness.
We had fantastic support however from the hospitals Occupational Therapist; she often went above and beyond her duty to help us. She was one of the few people who cared enough to stick her neck out for us and anything which was in her power to do she would do willingly. I don’t know what we’d have done without her.
We managed to get Jason moved to an adapted flat close to where my husband and I lived. It was ideal for both of us and Jason was really comfortable and happy there, he became a different person and people around him began to warm to him.
I had been working full-time for many years but this was now becoming increasingly difficult as Sonia came to live with us due to her relationship with her partner breaking down. Her partner continues to care for their son. I struggled on for a while working and caring for my son and daughter but as their condition deteriorated and with the difficulties in finding and establishing appropriate care for them this became impossible. After some difficulties at work I reduced my hours. Any leave I had from work would be used to care for Sonia and Jason, arranging a multitude of appointments and meetings and the ever increasing run of errands as well as trying to fit in social activities in order to give them some quality of life and pleasure whilst they still could benefit from it. I received Social Services funding for 4 weeks respite per year for which I had to find suitable accommodation and care for both of them. It was very difficult to find respite care homes that could offer what they needed and that could accommodate both at the same time as respite beds are few and far between they get snapped up quickly. This would mean looking further afield and travelling long distances and planning respite at least a year ahead. There were occasions when I took them on holiday but this became impossible when they became wheelchair bound. The only way I could take them was separately. This meant that, whilst away with one the other would go into respite and vice versa effectively this meant using 2 weeks out of the 4 weeks respite and left me with only 2 weeks actual respite. Eventually I asked my employers if I could take unpaid leave which was granted for 2 years initially and then extended to 3 years after which I could either return to work or resign.
Establishing the care needs of someone with HD is complex at best. This is mainly because HD cannot be categorised simplistically i.e. it’s not just physical, not just mental and not just emotional but more a combination of all. Added to this is the fact that each person affected would not present with exactly the same symptoms and therefore the care needs have to be individually tailored to their needs.
Needless to say 50 weeks caring 24/7 inevitably took its toll on my own health. I injured my back and my health went spiralling downhill very fast. I reluctantly decided that the best I could do for them now was to find a suitable Nursing home where they could be looked after although this didn’t happen without its own difficulties. The Nursing Home is not ideal due to its location but as there was no suitable alternative nearer that had the space for both of them we opted for this one.
Jason settled in quite well and got on well with everyone which I was overjoyed at because I was worried that he would be unhappy but he seemed to enjoy the attention and love the care staff doted on him. Over the next few years Jason’s condition deteriorated quite rapidly. He was rushed to hospital with a mystery illness which almost took his life. He was saved at the last minute when medics treated him for septicaemia caused by MRSA blood stream infection. Although Jason’s life was saved, he never recovered completely and he became re-infected every few weeks for nearly nine months until the infection took over and it took his life on 16th October 2009.
Never a day goes by without thinking of my son, I will always love you my darling boy.
Sadly after this was written Sonia also passed away from jhd.
He’s Much More Reserved and Shy Rides at the Theme Parks Computer Games Movies ( he particularly like horror movies ) WWE wrestling and his Favorite was The Undertaker of course. Jason loved blue.
Sonia was very adventurous and up for anything exciting Bunji Jumping Theme Parks and Rides, the more scary the better. She wanted to do a sky dive but by this time she was not well enough, that was a big disappointment for her, she was friendly, outgoing and enjoyed meeting people. Sonia loved red.