All of us encounter grief during our lives. Queen Elizabeth, speaking to relatives of people killed in the 9/11 attacks said ‘Grief is the price we pay for love.’ The death of a loved one can cause intense grief and it is believed to be amongst the most painful of all human experiences. John Bowlby (1980), writing on attachment and loss, said that ‘without attachment there can be no sense of grief.’ Death is the ultimate destroyer of attachments and the resulting grief affects people at a physical, psychological, emotional and spiritual level. Grieving is often referred to as occurring in different stages; most people experience periods of shock, denial, bargaining, anger, guilt and anxiety. These stages may not occur in a linear or sequential manner. Even when people adjust to the loss they often experience surges of unexpected grief and it can be difficult to put a time line on the end of mourning. However, most people eventually manage the loss and find new meaning in a changed world.
This article focuses on the bereavement and loss of people with an intellectual disability and gives an overview of how this group experience and manifest grief. Like others, people with these disabilities have many losses during their lives and their grief is comparable to that of the general population.
Information is also offered to families and carers on evidence- based supportive strategies which may help the person express grief and cope with the bereavement.
Understanding the grief of persons with an intellectual disability
In the 1970s, researchers started to document evidence demonstrating that persons with intellectual disabilities grieve like others. Patricia Emerson (1977) and Maureen Oswin (1982) contributed to raising awareness of the impact of loss on this population; their research showed that grief is experienced and expressed by people with mild, moderate and severe intellectual disabilities.
However, there are a number of differences in the ways in which this group process grief. For example, cognitive deficits may prevent the person understanding death, they may also have difficulties articulating their feelings and others can have problems understanding their modes of communication. Sometimes, this leads to grief reactions being disregarded or attributed to other causes. CS Lewis (1961), writing about his own loss, said: ‘No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning….I keep on swallowing.’ This quote gives an accurate snapshot of the physical effects of grief which resonates with many people. In turn, it also gives us glimpses of how confusing and disturbing bereavement can be for a person who has difficulties naming their physical and emotional reactions to loss. Realising that the grief of people with intellectual disabilities is similar to all others can motivate carers to search for creative ways to promote helpful coping strategies.
How can a person be supported through grief?
The first step in any supportive strategy is acknowledging that a person with an intellectual disability has the right to express their grief and to be socially supported. Carers are crucial to helping a bereaved person cope with the diverse experiences of loss. Below are some key points for those in a supportive role:
■ Protecting or shielding a person with an intellectual disability from the pain of grief is never recommended, even if it is well intentioned. They have an intrinsic right to be informed of the illness and death of a loved one.
■ Use accurate language to communicate news of a death and avoid euphemisms which can be confusing for a person who may have difficulties with abstract concepts.
■ If possible the person should be prepared for the anticipated death of a loved one.
■ Remember grief is a process and it may take some time for the bereaved person to realise the full implications of their loss.
■ Each person’s grief is unique to them and we cannot take away their pain. However, we can be present, listen, comfort and give reassurance that there will be others to support them.
■ Because many people with an intellectual disability have difficulty naming and articulating their grief, behavioural changes may be the only method through which they express the pain of loss.
■ Have patience with the bereaved person who tells and retells the same story of how their loved one died; retelling stories is a normal part of grieving.
Application of supportive strategies
Support starts by breaking the bad news sensitively in simple, truthful language. Continuing support involves acknowledging the grief, facilitating expression and promoting choice about attending the funeral and memorial rituals. The rich symbolism of these rituals helps to convey the mystery of death, as well as facilitating emotional expression. The reality of mourning starts when the funeral is over and others are back to their usual routines. If the bereaved person is emotional and withdrawn, time should be allowed for expression of feelings and a quiet space provided. Balancing emotional times with returning to daily routines which involve meaningful tasks has been shown to be helpful in coping with the intense feelings associated with death (Stroebe and Schut 1999). These strategies establish security and continuity and help the person gain confidence in their own ability to cope.
Klass et al.(1996) emphasise the importance of maintaining spiritual bonds with the Deceased: ‘remaining connected with a deceased loved one provides solace, and support, it can ease transition from the past to the future.’ For example, many people are conscious of their deceased loved one’s spiritual presence during important family celebrations and often use a symbolic way to represent them, such as a lighted candle or an empty chair. Cultural and religious memorial services are especially helpful in maintaining bonds; people can include their deceased loved one in their ongoing personal and family narrative. Faith in a divine plan is an important contributor to helping many, including those with intellectual disabilities, to endure suffering. Trust in God’s promises also gives hope of being reunited with a loved one in the afterlife (Morgan and McEvoy, in press). Below are suggestions for remaining connected with the deceased:
■ Being present at the funeral ceremonies along with family and peers is an important part of the grieving process.
■ Visits to a place of worship and the cemetery help promote continuing bonds.
■ Help the person retain an object which belonged to the deceased; this can be a piece of clothing, a book, jewellery or anything which was meaningful to the deceased.
■ Design a scrapbook which could include a copy of the obituary notice, a list of their loved one’s favourite foods, ‘sayings’ and a diary recording their own day-to-day feelings.
■ Help the person gather information on their family tree and to create photo albums.
■ Other expressive therapies such as music, reminiscence and reflexology can help a nonverbal person express loss-related emotions.
Bereavement and loss support groups are helpful for some people who are grieving. Seasons for growth is one such programme which has been found to be beneficial in promoting appropriate mourning. The approach is based on Worden’s task model of grief which proposes that the bereaved person needs to perform a series of tasks in order to adjust to a world where their loved one is no longer present. These tasks include: (a) accepting the reality of the loss, (b) working through the pain of grief, and (c) adjusting to the environment without the deceased. During Seasons for growth sessions, the imagery, colours and symbolism from each season is used as a framework to demonstrate how loss and change are interlinked. The programme can help the grieving process by encouraging expression of thoughts and feelings and by sharing stories of loss with others who are also bereaved. These group sessions help to educate the person on death concepts, as well as promoting resilience by drawing on peer support. Different coping skills are explored, as well as naming other significant people who are in the person’s life to love and support them. (Information on training of facilitators can be found at www.goodgrief.org.au and firstname.lastname@example.org.)
When somebody dies, the world of those close to them changes forever. Often people with an intellectual disability have secondary losses; this can include loss of the person who understood them best, as well as their familiar home environment. These changes may interfere with and prolong the grieving process. There are differences in each person’s story of loss; supports are needed which are holistic, person-centred, sensitive and oriented to each individual’s experience of grief.