9th May 2023
Sanctuary Supported Living
To mark Dying Matters Awareness Week 2023, Specialist Project Worker Jet Lengalenga shares her experience of supporting a resident who has a learning disability with his end-of-life planning.
Jet Lengalenga has worked at Sanctuary Supported Living’s Compton Road for over 20 years, providing care and support to adults with learning disabilities, and helping them to live as independently as possible. Dying Matters Awareness Week, supported by the national charity Hospice UK, aims to give people and communities a chance to come together and talk about death, dying and grief.
Jet said: “Edgar*, 63, has lived at Compton Road for 30 years. He has a personalised support plan, and we work with him to develop his skills, confidence and independence – and to help him achieve his personal goals, in all aspects of his life.
His mum had always been concerned about his ability to make decisions around his end-of-life choices, and she worried about what would happen to him when she died and wasn’t around to help him, but she didn’t feel comfortable having a conversation with him about it, so she asked the Compton Road team for support.
Being such a sensitive topic, and considering Edgar’s learning disability and level of understanding, I had to carefully choose the most appropriate way to discuss it with him, so that he could be fully informed and make decisions for himself.
One afternoon, we sat down together, and he began talking about the funeral of a friend and how the family members were part of the funeral procession. I asked him what he liked best about the day, and he said that he liked the gifts that were given out as a memento of his late friend.
Edgar has always loved collecting trains – it’s his favourite hobby – so I asked him, when his time comes, as we will all have to face one day, who would he like to give his train sets to? Edgar said that he would like his nephew to inherit his train sets, as they share the same hobby.
Edgar felt pleased to have finalised all his end-of-life wishes
I suggested that, if he particularly wanted his nephew to have the trains, he could write down exactly what he would like to happen when he dies, including who he would leave certain items to. The team and I then supported him to draft a will with a local solicitor, and also informed his brother of his wishes. Edgar was happy, knowing that his treasured train sets would go to a member of his family who would enjoy them as much as he did.
We also supported him to plan ahead and make end-of-life plans and funeral arrangements, so that he could be confident that when the time came in the future, his wishes would be respected. He said that he wanted his funeral to be like that of his late friend, so we helped him to access information from various different service providers, so that he could choose exactly what he wanted, even down to the type of car, the music and the floral arrangements.
Edgar felt pleased to have finalised all his end-of-life wishes and made his funeral plans official, and he said that he liked the fact that his chosen final resting place was close to home, so that his family and friends would be able to visit and lay flowers from time to time. His mum was also relieved that he had had the personalised support he needed to understand such a challenging topic and make informed choices.”
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*Name has been changed.
