This section should be used in conjunction with our section Living Through Grief which explains what happens to us physically, mentally and emotionally when we experience the pain of loss and separation.
People with disabilities experience the same pain when someone they love dies. This leaflet highlights this fact. It also identifies some additional aspects of grief that might be experienced by people with disabilities.
The Experience of many Losses.
Some people with disabilities may have experienced many losses over the years. They may have left home and moved house several times, leaving family and friends behind. It should always be remembered that a residential change may be a major loss in life.
People who live in residential settings may experience loss when staff members, whom they have been close to, depended on and confided in, leave. People with disabilities may need support to maintain friendships when they move house or when someone close to them moves away.
People with disabilities may have few possessions in their lives so that the loss of a favourite possession can lead to a surprisingly severe reaction.
Loss can also be seen as a failure to receive something that everyone takes for granted. For a person with a disability, this might be the ability to walk or to experience good health.
Over the years, many people with disabilities may have had family members and friends in school or in the workplace who have died.
Grief can be intense when someone experiences such multiple losses.
After bereavement it is common for people to become aware of previous losses in their life. The person may feel overwhelmed, as their losses may not have been recognised by those around them, or they may not have had time to work through each loss. It can be beneficial to spend time talking about these losses at this time, so that feelings are not bottled up.
Grief after a death.
It is essential that a person is told of a death in their way of communicating and that real terms i.e. died rather than ‘passed away’ are used. They should, if they wish, be included in the rituals. Some bereaved people may need reassurance that they are not to blame for the death. It may also be important for them to have personal reminders of the person who has died. In residential settings changes such as staff and programme changes should be made at a pace that minimises the trauma of the loss.
Thinking about someone who has died can cause anxiety and fear about our own death. This may particularly be the case if the bereaved person has the same medical condition as the person who has died. Talking about such fears allows them to be confronted. A medical check up may also help to reassure the bereaved.
Differences in the way Grief is expressed.
It should never be assumed that people with any form of disability do not feel loss, nor should it be assumed that a person does not feel any grief because they cannot verbally express it. Behaviour rather than words can indicate true feelings. A change in behaviour, such as a person who is usually quiet, having outbursts of verbal or physical aggression may indicate that they are experiencing emotions such as anger and disbelief. The behaviour of a person with a learning disability may regress to a previous stage of development. It could be some time before they miss the person who has died and understand what has happened. So grieving may be delayed. For all bereaved people feelings can be physical, emotional and spiritual. These feelings are normal emotions associated with the grieving process. It is important that those helping the bereaved can make a proper assessment of the grieving person’s understanding of what has happened.
THE LOSS OF INDEPENDENCE.
In the case of the death of a parent or carer, it may be that the bereaved depended on this person for both physical and emotional support in their daily routine or living arrangements. They may now need to have different support so that they can manage their future. Talking about personal needs and about loss and change can be an emotional support at this time. Grieving takes time. For this reason it is often thought better for bereaved people not to make big changes in their life until they have had time to grieve.
All bereaved people need time and space to grieve in their own way. It is important to find a suitable way to help people with disabilities to express their emotions in the way that suits them best – maybe through music, art, play or by talking to somebody they can trust to understand their particular problems.