Tim lived at the home for thirteen years together with seven other people, enjoying life to the full with his friends. In the summer of 2005 the staff team observed changes in Tim’s general health and well being. The manager liaised closely with Tim’s GP and the community learning disability team. A full health screening and dementia assessment resulted in a diagnosis of Alzheimer’s.
Tim’s parents had passed away. His remaining relative was his brother, who lived in Devon. As soon as the Alzheimer’s diagnosis was made, the home manager engaged with Tim’s brother, the community health team and funding authority, to start planning how Tim could be supported both at that point and through the potential unpredictable time ahead. The dedicated staff team were all committed to helping Tim live the last part of his life as he wished. Training, awareness and preparation was sought for them.
In August 2009 Tim entered a later stage of dementia. He could no longer manage stairs. No downstairs bedroom was available. Through the creative thinking of the team, the office on the ground floor was converted into a bedroom. It was achieved in one day and Tim was able to keep some level of independence and mobility for a while.
Physiotherapy input was very important. It helped the staff to learn new skills around how to support Tim. It also helped to identify equipment that would be of assistance. The home had developed an excellent relationship with the local GP practice over the years, which meant that when Tim’s health changed, access to community nurses and other professions were deployed with minimal delay.
Regular care planning and review meetings were very important, engaging the support of key professionals. At one review Tim’s changing support needs were discussed and it was clear that further funding was required if his higher level of personal support needs were to be met. The funding authority wanted to make enquiries about mainstream provision for dementia care in elderly care services in the area local to Falstaff House. At this stage Tim was still quite able to state that his choice was to remain at Falstaff house. The team advocated determinedly for Tim, so that he could achieve this goal. They used the Mental Capacity Act to demonstrate that Tim had the ability to make choices. The team talked with Tim’s brother who was happy that Tim should try and stay in Falstaff house, as it was his home. The home manager continued to liaise with Tim’s funding authority about the funding of equipment and additional hours of staff support including some waking night hours. The care home organisation, Hft, had funded extra hours to make sure Tim was safe and well—but this was not something that they could sustain so they had to negotiate hard on this. Eventually, after long and difficult negotiations, agreement was reached to pay for the additional support hours, which enabled the home to continue with the support that Tim needed.
In February 2010 Tim became immobile and needed to be hoisted in and out of bed and into his wheelchair. Tim was assessed for a new wheelchair and for a specialist bed and air mattress . Advice and further training was taken from the community and incontinence nurses about skin care and the use of equipment, as bathing was now not possible.
Tim’s care and support was now well managed and although the Alzheimer’s disease did mean that he had some days when he was less well, and he had a lack of mobility, he was able to be with his friends. The staff support team felt Tim should be able to get out and about and visit the day centre he had been attending regularly before his health deteriorated. The home’s minibus was not suitable for Tim, so the team looked at the option of an adapted vehicle being acquired for Tim. In August 2010 he had a demonstration of an adapted vehicle. Tim was delighted, showing smiles, pointing and saying he was happy to have one. Tim received delivery of his vehicle in January 2011.
In late January 2011 Tim became acutely unwell and was admitted to hospital following a period of unconsciousness from which staff were unable to rouse him. During the following months, Tim was in hospital several times, sometimes for a number of weeks when he was too ill to remain at home. He had suffered a cerebral bleed. It was becoming apparent that Tim was coming towards the end of his life. His last admission to hospital was necessary as he experienced further periods of unconsciousness and a prolonged seizure. Hospital liaison commenced for Tim to be discharged home as no further medical procedures were needed, but just prior to discharge it was discovered that he had tested positive for M.R.S.A. The manager and support team felt that Tim and he could best be supported back in his own home, with his friends and familiar surroundings. They wondered how they should support him at home, bearing in mind that there are other vulnerable people sharing the house with Tim. The local GP practice was contacted who reassured the team that there was no threat to others and that given normal good hygiene practice, there should be no problem.
Tim came back to Falstaff house in May. He was pleased to be home and as always the perfect gentleman. He thanked everyone for their help and support. Tim seemed to be stable but tired. He snuggled into his own bed that night, surrounded by things he loved and photos of his family. The next morning Tim was pleased to be supported by people he knew. His friends popped in and out throughout the day . Later Tim indicated his wish to go to sleep, so his pillow was plumped up and his duvet tucked in. A short while later a member of staff popped their head around the door. Tim had passed away peacefully in his sleep.
Although everyone was very sad that Tim had passed away they felt that the right things had been done to make sure that Tim spent the last two years of his life among the people who knew him, and that this had clearly been his wish. To achieve this for Tim the team had needed to mobilise all of the support that was available. They had to review constantly their own processes in terms of how they worked with and supported Tim. Most importantly, they needed to be completely honest about whether what they were doing in terms of helping Tim stay where he wished was in his best interest and could they continue to provide the support and care that he needed. This was a team effort in every sense of the word.
Tim’s family have agreed to the use of his name