Bob Pearce has worked for Mencap and supported people with a learning disability for many years. Here he shares stories of how people with a learning disability come to terms with the later stages of life.
The surprising discovery of your first grey hair can get you reflecting on your life. There really is no getting away from it – we are all getting older. Part of coming to terms with that means accepting that we will have to say goodbye to the people closest to us one day – including our parents.
All of us find the life-changing development of getting older tough to get our heads around, and we can need some time and a supportive shoulder to ‘get used to the idea’ and adjust to the life without them.
It is essential that we work hard to find ways in which people with a learning disability can be supported to gain an understanding of these types of major changes that will eventually happen to the most significant people in their lives.
Barbara* had been supported by Mencap since she moved from her family home several years ago. Her dad continued to be a huge part of Barbara’s life and visited several times a week. She always looked forward to her dad’s visits – so much that she’d often be waiting near the front door on the days he was due, ready to greet him.
When her dad became seriously ill quite suddenly and was not able to visit anymore, the Mencap team needed to find a way to explain and help Barbara understand his absence.
Following the advice given by the learning disability team’s psychologist they visited her dad at home and took a series of photos of him. These images were carefully chosen to show dad in familiar surroundings, sat in his chair and using the oxygen mask that he now required. These photos showed familiar surroundings, and that there was something different about dad.
The team then used the photos each day to help give a brief explanation to Barbara that dad was at home and would not be able to visit today. It was equally important for the team to ensure that Barbara had a variety of replacement activities planned for these times.
As Barbara did not wait by the door for dad to arrive after the team had used the photos to explain where he was today, it suggests that this helped her understanding and served to reduce her uncertainty and anxiety.
When dad's condition meant he had to stay in hospital, the team visited him there to take more photos of him in his new surroundings so that these could be used to explain to Barbara where he was now. The photos were also used to help Barbara prepare for the visits to see dad in hospital.
This work by the Mencap team is supporting Barbara to have an understanding of the changes that are taking place in her life, and helping to prepare her for bereavement when that time does eventually arrive. Trying to make sense of loss is a huge task. We want to help and support people with a learning disability to have the same opportunities to go through life’s many experiences and find their own way of making sense of them.
*Barbara’s name has been changed for reasons of anonymity
Have you been inspired by Bob’s story of how Barbara received support? Learning Disability Today is supporting Mencap’s Learning Disability Week which is inviting people with a learning disability to share stories of their incredible first times. For more information on how to get involved with Learning Disability Week or how to share your own story head here: Learning Disability Week