On the 27th August 2008, my dad, Malcolm, was discharged from hospital. He’d been an in-patient for nearly seven months whilst the doctors tried to work out what had changed him from being out-going, funny and sociable to a very different person. He was eventually diagnosed with Frontal-lobe dementia, a rare form of this disease.
During his stay on the mental health ward, my dad’s well being had deteriorated dramatically. By the time he left hospital, he could no longer understand things and he couldn’t wash, eat or look after himself. During those lost months, he had virtually given up hope so we knew he needed to get out of hospital before we lost him completely. We felt his best chance was to be in an environment that allowed him to feel safe, secure and loved. There’s only one place that would allow him to feel that way and that place was home!
A care package had been put in place for my dad’s discharge which was designed to meet his health and social needs. He would attend a day centre for four days a week (Monday – Thursday) between the hours of 8am and 5pm to provide some respite for me as his full-time carer. Initially, my dad prospered in his new routine. He was thrilled to be home and his whole demeanour changed. After barely speaking during his final two months in hospital, he was telling jokes again – bad jokes that were always considered to be one of my dad’s trademark characteristics. He even laughed from time to time.
Our family were delighted to have him home again. We felt we’d been blessed with the gift of time, as we’d been told by various health professionals that he’d need to spend the rest of his life in a care home. After seeing what my dad had endured during his seven-month stay in hospital, we thought differently. Thankfully, he was proving us right.
Entrusted with my dad’s care, it was my responsibility to look after his personal needs. Every day I’d shower and dress him before we tackled whatever obstacles we faced during the day. I thrived in my new role and it was fantastic to see my dad have some joy in his life again, something that had been missing over the preceding months. We did various things together – going to football matches, the cinema, on walks and sometimes out on drives as a family.
My dad was responding reasonably well to his time spent in day care and his health needs were being looked after. However, when I went to get him up each morning, I knew that I was sending him to a place that he didn’t really want to be. He was able to share his thoughts from time to time and even said that he didn’t want to go. It hurt to know that after everything he’d been through and knowing everything that he’d lost, that I was still forcing him to go somewhere that he didn’t want to be. It was a double-edged sword. He didn’t want to go but I knew it was important to maintain some level of professional support; I just wished there was a different way to do it.
During the spring of 2009, about eight months after my dad first came home, my mum and I were approached about changing the way my dad’s care was provided. I’d contacted my dad’s social worker to find out whether we could organise some overnight care at home for my dad because I hadn’t had a single evening off since my dad’s discharge from hospital. We discussed the possibility of overnight stays at the ‘home’ which provided his day care, but knew it would unsettle him. This led us to discuss his care package as a whole.
My dad’s social worker introduced us to our Local Authority Personalisation Lead. He talked to us about taking more control over my dad’s care through the use of a personal health budget. What he said, really appealed to us. It would enable my dad to regain some control over his life. My mum and I had already raised some concerns about his current care package such as the lack of flexibility in his care, the hours that it was provided and lack of suitable activities so a personal health budget sounded like music to our ears. My dad was also saying that he wanted to spend more time in his own home.
We were offered the chance to join a ‘support planning live programme’ which would enable us to review my dad’s support and develop a person-centred plan. This would highlight what was working and what wasn’t working in his current package. It would also establish what was important to him as a person and what was important for him to stay well. It was an opportunity to rethink everything and we jumped at the chance.
My mum and I attended four one-day sessions. In each session, we discussed in depth, what my dad wanted in his life, what eased his anxieties, who was important to him, how he liked to spend his time, and ultimately what it was that he needed in order to feel safe and secure. We were introduced to someone who’d been through a similar process and had fought for a better life for her son. She offered us her support and the benefit of her experience and together we developed a great plan.
We felt confident to move things forward. What we needed now was to identify the best way for us to hold and manage my dad’s personal health budget because we don’t live in a personal health budget pilot area with direct payment powers. We were introduced to the Chairman of Ribble Valley Crossroads who said he could help. Acting as a third party for a personal health budget was something Ribble Valley Crossroads hadn’t done before, so we sat down and talked things through. There were questions that needed to be answered to feel comfortable with each other because we knew that a good working relationship would be really important. I immediately felt at ease; it was important to us as a family that we maintained as much control as possible over my dad’s personal health budget and to advocate HIS choices. Ribble Valley Crossroads were clear that it should be that way; we could choose our own staff and set rates of pay to ensure that the care plan was sustainable. They also shared our vision for a better life for my dad; we were a match!!
By December 2009, my dad had a personal health budget so it was time to implement the support plan. We had chosen several ‘outcomes’ :
- more consistent support
- more flexible hours
- more choice over how he spent his days which included Blackburn Rovers home games
- fewer hours at the ‘day centre’
- more time at home
Three years on, we employ four members of staff who have all worked for us for at least two years. My dad no longer attends the day centre and spends more time at home. He enjoys doing things that HE chooses, more often, like feeding the ducks, going for walks, listening to music and going to football matches. He uses his personal health budget to rent a flat so that he can enjoy some peace and quiet watching the TV programmes of his choice with a single personal assistant who understands his needs and wishes…and much, much more!
When we first decided to bring my dad home from hospital in 2008, we were told by health professionals that we wouldn’t be able to cope, he’d be back in hospital and then in a care home within six weeks. Three and a half years later, and my dad still lives at home, supported by those he loves and that love him. It is because of this love, and my dad’s personal health budget, that all this is still possible.