Jason’s Accident by Liz Masurier - Part 3
The return home after hospital
After a full year in hospital and rehab, Jason’s prognosis was very poor and we were told to plan on spending our life savings on his care, after which we would have to depend on NHS care at home for the remainder of his days.
Jason, at this stage, was still fully dependent on care and barely able to engage in conversation. He slept for 18 hours a day, had to be helped into a wheelchair from bed and his speech was unrecognisable – he uttered the minimum necessary in halting monosyllables. Gone was the animated and joyful conversations of our yesterdays: nowadays, when I came to his room with our son Jack in a buggy, I was invariably met with the simple utterance: “I … need … a … bedpan”.
The reality of being incarcerated in a rehab bed, especially at the weekends when staff numbers were cut, meant that relatives were often the first person someone in a rehab bed would see for a few hours. By this stage, he was most often desperate to simply go to the toilet.
Jason’s new presentation was shocking and he was nothing like the person he used to be. He was unable to hold up his head, so when he sat up to be wheeled into the garden for a walk in the sunshine, his head slumped onto his chest for the duration of the outing. He had simply lost all power on the left hand side of his body and had no energy at all. His recovering brain was coping with learning to do literally everything again from scratch and he was constantly overwhelmed with exhaustion. This phenomenon, known as fatigue, is something all brain injury survivors will be familiar with and is very significant but was not something that was flagged up as an issue in his care, so for some time I had no idea what was going on with him. Frequently, in meetings about his care, I would look at Jason, perhaps when a doctor or occupational therapist was addressing him and would be embarrassed to discover that he was sitting there with his eyes closed.
The second biggest change was that he couldn’t engage in conversation. Most of our days together for the first year after his accident were spent in complete silence. He was able to haltingly respond to questions from visitors, but most of the time he was too heavily fatigued to try to engage and simply ate in silence or slept. What I missed so much was the relationship we had, which was completely gone.
However, though it was so difficult and frustrating on a daily basis at that time, there was still hope: Jason still had his wicked sense of humour and his wit and his children and I would enjoy seeing flashes of this every so often. Lying in the bed apparently comatose, with his eyes closed, he would come out with some comical line and we would think, “he’s still in there!” In the first few weeks after he woke up, he counted to ten in Cantonese for the children.
There was also one tiny chink of hope of his possible recovery: a brand new and experimental treatment that Dr. David Shakespeare of Preston Neuro Rehab Unit wanted to try out on Jason. One of Jason’s cognitive injuries was to his concentration. He could not concentrate on more than one thing at a time, so it was impossible to make any progress with rehab. Dr Shakespeare suggested the use of Ritalin, which might help his ability to concentrate, and hence allow him to progress with rehab. This treatment is usually given to children suffering from ADHD who find it difficult to block sensory messages and it helps them to calm down. Dr Shakespeare seemed to be quietly confident about this treatment and we were consequently quite excited about it. It turned out to be our salvation – a game changer.
Dr Shakespeare put Jason on Ritalin in mid January 2008, and very slowly over the next few weeks his Mum, Joyce, and me noticed a slight improvement in Jason’s demeanour. He began to be able to look around, exchange eye contact and most importantly, engage in conversation while eating, which meant a lot to us as we had sat beside him in almost complete silence for a full year.
Spring 2008 was a time of hope for us. Memories of that time: sunshine streaming through lace curtains on long glass doors; friendships with staff and other patients in the unit; longer days, with warm Spring sunshine penetrating our consciousness and lifting our hearts. I began to breathe again, to be grateful for the miracle of Jason’s recovery and to hold on to hope that he would be able to walk again and to enjoy a meaningful life with his children, engaging in some of the activities that he used to do. Jason was someone who truly was a “hands-on” Dad, so devoted to his children and full of concern for their welfare. They had a full life with their Dad when they were able to spend time with him, walking, rock climbing, surfing, sailing, skiing and swimming and were still so little: his loss was deeply poignant. Was all hope of playing, sharing activities and enjoying life with their wonderful Dad now gone? It was very hard for his family to accept that he would never again be able to participate in these activities which had formed such a large part of their lives together.
We took hope from the tiniest signs of improvement from Jason: a smile, a single word, a response to a question. Every day was another opportunity to follow the latest suspense drama … would he smile? Would he respond to a greeting? Would he show signs of his old sparkle returning again? … I had a feeling, just a hunch, a slim hope, that he was improving. Weeks and months passed. The improvements in Jason seemed almost imperceptible… but we continued to hold on to the glimmer of hope. That kept us alive emotionally.
However, the physio staff frustratingly refused to accept he was improving. Jason’s recovery was hampered by his extreme fatigue. His recovery was extremely slow - he seemed to learn something new, but was unable to perform that function again at the next physio session, so his current physiotherapist at that time decided that he would simply be unable to ever make any further progress and she stubbornly insisted on this conclusion. Her thesis became hospital policy, reinforced by all staff members, despite the evidence that his family could see his gradual improvement and thus his care plan did not include any attempts to increase his independence. This was very frustrating for us.
By October 2008, almost two years after his accident, they were still refusing to attempt to teach him to walk and he was sent to a care home in a maximum support wheelchair with a hoist. “You must accept that Jason will never walk again”, they insisted. Tearful, angry words were exchanged in team meetings between hospital staff and his family.
Having left hospital on 14th October 2008, we needed to find somewhere to live near Jason’s children. It was almost impossible to find a suitable rented house and I felt a sense of hopelessness that we would never be blessed with a house that had all the facilities which Jason needed. We were forced to agree to allow him to move into a care home in Morecambe, initially, a situation which could easily have gone on for many months as he was so profoundly disabled. However, we were incredibly lucky to stumble across, on a local estate agent’s website, a large rented house four miles from the children, which had already been converted for use as a care home, with a walk in shower and a stair-lift. What a gift! With the help of Kate, Louis and Jenny, Jason’s three excited children with Carol and Jason’s Mum and sister Michelle, we moved into this house – and into the brave new world of life outside the hospital, with the support of a large care team and a range of NHS professionals.
So in November 2008, after a month at Morecambe Bay Care Home we all moved into our fine Georgian house in Heysham and spent a happy Christmas there with Jason’s children. Home at last. To a new reality but one filled with relief and hope. Jason was able to engage better with the children, the intonation in his voice improved and he sounded more like his old self.
At this stage, Jason was still in a hospital bed on the ground floor of our newly rented house. This situation was to go on for several months. He slept for the majority of the day, had a wheelchair with neck support and a comprehensive care package from a local care organisation called Biju. Our house turned into a private care home, with a large team of care staff arriving in ones and twos every day to feed, change and toilet Jason and take him through his prescribed physio exercises, which at this stage consisted of lying in his hospital bed (with rails around the sides) and raising his arm and legs. We made arrangements to buy a wheelchair bus. We had twelve carers on our books, and they spent twelve hours a day in our house on a rota basis. Four times a day we had to have two carers to allow Jason to transfer to the toilet.
Our life at this stage was all about team meetings between a range of professionals: social workers, managers, occupational therapists, physios, staff and family and our family home felt a bit like some kind of organisation with Jason’s well-being at the centre of it. Every day was filled with the full time job of Jason’s recovery.
We were also paying privately for neuro physio four times a week. This latter was a gift from Jason’s Mum’s partner Alan, and cost £60 per hour, so it was prohibitively expensive for most people. However, it was actually possible to get back the use of his arm – even two years after leaving hospital. The key for us was the use of a Functional Electrical Stimulation (FES) machine. We used this machine on Jason’s completely inert arm for a full year, and by the end of that year he was swimming, cycling (in 2009) and skiing by 2011. When he left the hospital in 2008, his arm was sitting on a purple cushion in the wheelchair and he was only able to feebly lift his index finger. What progress we had made! We had gone from hopelessness to joy - it seemed miraculous to me.
The role of the NHS in Jason’s recovery
It was really a huge credit to the NHS and to the investment made in his recovery, as well as the fantastic support of all our family and friends. The UK is hugely lucky to have the NHS and although much maligned - it may not be perfect with all the government cut backs - it saves the lives of many people who would not be so fortunate if they lived anywhere else in the world and is a wonderful aspect of life in Britain. We are certainly very grateful for the care of the staff who worked hard to care for Jason over 22 months and who helped to bring him back to being able to live a fulfilling and meaningful life.
Liz Le Masurier