Many years ago I worked in a large hospital for people with learning disabilities. It could be a big, confusing place and little attempt was made to explain to it’s residents what was happening and sometimes people just disappeared with no explanation. Many residents showed signs of depression and bereavement for some years after losing a close friend, having been denied the opportunity to attend their funeral or to grieve in any way.
Over the years I have worked with families, carers and therapists to improve this situation and to talk about things which may be difficult – such as death, people moving away or an elderly parent being unable to visit. When someone died, particularly if it was a member of the household, there was a sadness, an uncomfortable atmosphere in the home, so it is important to give people the news as soon as possible. We cannot be sure how much an individual understands, or whether they can relate to photographs, so I would always use several props, backed up with simple words and phrases,” Mary has died”; “We won’t see her again”; “We feel sad”.
For example, when telling someone that their friend, with whom they lived, had died we would use the individual’s empty wheelchair, a hat that they always wore, or use a sound that we associated with the person who had died. If it seemed appropriate we would sing a goodbye song. We would pass round a photograph, all the time acknowledging peoples’ reactions and acting accordingly. It was rare for someone to react immediately by crying or openly seeming upset. If they did, it may have been in response to the sad atmosphere or uncertainty.
Wherever possible people should attend the funeral of a family member or friend, funerals are to say farewell. We should not just avoid a situation in case the individual becomes upset as it is an important part of the grieving process, but we can attempt to help their understanding and be sensitive to a person’s mood. Again we would use photographs, objects and music familiar to the person.
I have been with people who have responded to the death of a close person in very different ways. One lady took me to the bedroom of the person who had died every day for 15 days so we could check that she was not there. On the 16th day she decided not to come with me – she didn’t need to look any more. It was fortunate that the home staff didn’t clear the deceased’s room until after that point. Another person didn’t appear to react at all to the news that his mother, who visited him every week, had died. He showed no response to the sadness of other family members, at the funeral or to his mother’s absence. Several weeks later he went off his food, became withdrawn and agitated with no other obvious cause. We talked about his mother, made up a memory box and supported him throughout. Everyone reacts differently, so we have to watch out for any change in behaviour, mood or physically.
Care homes these days are much more aware of the emotional well-being of their people and have a policy on how to support them through bereavement, responding to their needs sensitively and respectfully. It’s always important to acknowledge a loss, to speak about a carer who is leaving or a friend who may be moving away from the area and to recognise that an individual may experience similar emotions to when someone has died.
The staff at Us in a Bus feel a close connection to the people they support and they take time at every Staff Meeting to remember any who have unfortunately passed away. This is done fondly with love, remembering the good times and the person’s many accomplishments. Us in a Bus has also developed a set of guidelines to help their staff support someone following a bereavement and there are many other resources available to help.
Chair of Trustees