Finding out that someone we love is unwell and will not recover is one of the toughest pieces of news many of us will ever receive. There is a lot to come to terms with as we try to make the most of the time that we have left together.
This is a situation that we faced at one of our supported living services. Three gentlemen – Roman, Clive and Anthony – had lived together for more than 15 years. They were firm friends and loved each other’s company. They did everything together, including going on holiday.
Roman had suffered a long period of ill health following a stroke, but the team were supporting Clive and Anthony to visit him regularly in hospital. Everyone hoped that he would one day be well enough to return home. Unfortunately, it became clear that his new mobility problems meant Roman would not be able to come back to live here again. Clive and Anthony continued to visit him regularly and looked forward to their visits a great deal. A new housemate, Stephen, moved in.
But then we learned the very sad news that Roman had cancer and it was not treatable. This was a big shock to his support team, many of whom had been with Roman for a long time. As they were beginning to deal with their own sadness, their thoughts turned to how best to tell his friends.
The team knew that they would need to take great care in explaining things in ways that Clive and Anthony could understand. This was particularly important for Anthony, who does not use speech. It was also important to make sure that their new housemate, Stephen, was included in this process, so that he could understand why Anthony, Clive and the support team were upset and sad.
The team sought the advice of a psychologist for extra support. The psychologist visited to get to know everyone. She then created special social story books about what was happening to Roman and how this might make everyone feel.
The books used pictures and a few words to help to explain that cancer is an illness and that Roman’s cancer will not get better:
She also created a book to help Stephen to understand what was happening, and why his new housemates might be sad and upset:
The books also helped to prepare Clive and Anthony for what to expect when they visited Roman. For example, he would not talk as much as he did before, and he would look different because he had lost weight:
The final book helped to explain death and what the funeral would be like and how they might feel.
The books were really helpful in supporting the team to help Clive and Anthony begin the process of coming to terms with this very sad news. They also helped them to understand that other people would be sad too, and that is was okay to feel sad and to express their feelings. It gave everyone a chance to talk about why they love Roman, and remember happy times they had spent together.
The team continued to support Clive and Anthony to visit Roman. They were able to visit shortly before he passed away, which was very important to both of them.
Although it was a very sad time for everyone at the house, talking openly and honestly with Anthony and Clive meant that they were better able to express their own feelings, too. They were very sad that they would not be able to see their friend again or do the things together that they used to enjoy.
The creation of the books has been a really useful experience for everyone involved, and we will be using this approach again in future if a similar situation occurs. We are also looking at ways to adapt the idea for other important life events, such as preparing to move home, or when a long-standing member of staff leaves.