Heron |  Adult Grief Directory Contents ]
 

Learning Disabilities and Bereavement
 

Clues To Unresolved Grief During Bereavement and Loss
Practical Recommendations Before the Loss Of  a Loved One After Bereavement and Loss

Introduction

If you are caring for someone who has learning disability, they will need extra support should they experience a major personal loss, such as bereavement. As with most of us, such a loss will have an impact on their lives, and it is important that it is handled sensitively. The extent of the impact of the loss could be missed because of a limited ability to express feelings. They will need help to express their feelings and emotions and to come to terms with their loss. How we mourn will often depend on how close we were to the one who has died. For the person with learning disability, the extent and expression of grief will also relate to the extent of their dependence and their personality. A past history of depression, or other losses can make someone particularly vulnerable.

Understandably, you may want to protect them from experiencing the pain of their grief. However, it is important to recognise and acknowledge their feelings and not underestimate their capacity to mourn. Clear communication, giving all the available information and not concealing anything through fear of disturbed behaviour is important.

If there are addition physical special needs or disability such as blindness, lack of speech or paralysis, then they will be even more dependent on whoever is caring for them. The death of the carer could mean that they may have to move and be subjected to living in alien surroundings, with strange smells, textures, lights, with strangers feeding them, hearing unfamiliar voices and being touched by unknown hands.

Clues to Unresolved Grief

There are several aspects of behaviour, which may be a pointer towards unresolved grief. These include sudden changes in mood and behaviour. They may be unable to speak of their loss without intense emotional reactions such as crying or shouting, or other indications of anger, such as verbal or physical aggression. The theme of loss may tend to recur frequently in conversation, and minor events can trigger a fresh grief reaction. Some people may cling to the possessions of the person they have lost and be distressed if they are taken away. They may isolate themselves socially and stop joining in activities, which they usually enjoy. They may show a personality change and develop depression, anxiety, or lose touch with reality. Challenging behaviour in the form of verbal or physical aggression, apathy or regression (like bedwetting, soiling, smearing of faeces) can occur. Some symptoms of unresolved grief require specialist help. These include self-injury, severe eating or sleeping problems or becoming mute. Should you be concerned about such behaviour, then it would be wise to get some help.

General Principles

S Be sensitive and supportive
H Be honest with yourself and the person with the learning disability
A Be aware of, and acknowledge and individualís emotions
R Respect the individualís wishes
E Empathy

Practical  Recommendations

What can families do?

  • Try to communication clearly and honestly about the impending loss. It can be hard to deal with your own painful emotions, and as a result it can be difficult to talk.
     
  • If possible try to arrange visits to the dying person. This will allow some preparation for the impending death and can help them start to come to terms with their loss.
     
  • When opportunities arise, try to encourage discussions about life and death. The way a death is handled in TV soaps can prove a useful talking point in helping someone to understand the meaning of loss and the painful emotions that accompany it.
     
  • Find out what they know or understand, and offer the opportunity for their questions to be answered.

What can staff do?

There are things that staff in day and residential settings should do in addition to the recommendations listed above for families.

  • Be aware when a resident is about to lose a loved one and try to anticipate his or her reaction to the loss.
     
  • Communicate clearly and truthfully with the resident about the impending death, with the help and permission of the family.
     
  • Recognise that people get attached to one another in group homes or at day centres. Any impending loss of a friend should be communicated as soon as the information is common knowledge.
     
  • If staff are worried about a residentís ability to cope with bad news, seek support from colleagues.
     
  • Staff should be aware of their own feelings, and seek advice at an early stage from colleagues. This will help staff who are supporting a resident who is facing an impending loss.

During Bereavement and Loss

What can Families and Staff do?

  • Bereavement and loss within a family is a very traumatic period for everyone. A person with learning disability will sense this loss and the accompanying emotions.
     
  • Communicate clearly and honestly about the loss of the loved one or any other significant person in their life. Sometimes inappropriate links can be made with a long-term problem and excessive pressure brought to change behaviour, i.e. 'Now mum has died you must not wet your bed anymore'; or 'Now mum has died, you must learn to feed yourself/dress yourself.' 'Now dad has died, you must be the man of the house and help your mother'. These sorts of pressures will add to their unhappiness and worries.
     
  • Use clear language when giving the news of a loss. Try to avoid euphemisms like 'He has gone to a better place', or 'She has gone to sleep'. This adds to confusion and delays the mourning process. Be aware that they may think that the disappearance of their loved one may be as a result of them being difficult.
     
  • Do not withhold news of death for fear of difficulties in managing emotional expressions of anger or sadness.  Neither should the truth be withheld because of a fear that they will not understand.
     
  • Respect, comfort and listen. Encourage them to cry and to show appropriate emotions openly. Like anyone else who is grieving, they will want to talk over again and again about what has happened and how they feel.
     
  • Do not try to jolly them along in an effort to make them feel better.
     
  • If possible allow them to be involved from the very beginning when funeral arrangements are made. If possible make arrangements for them to attend the funeral and partake in the rituals. Being able to experience what happens; to see other people showing emotions; to touch the coffin; take flowers and to say goodbye can greatly help them mourn.
     
  • If they are left alone in the family home by the death of the main carer, try to support that person at home in the early stages of grief, even if he or she will be resettling in new surroundings later.  This can be achieved by health and social services staff and relatives liaising closely. Helping a person to stay on at home provides space and time to start the grieving process in his or her own surroundings.

After Bereavement and Loss

What can Families Do?

  • Be aware of a grieving person's feelings at birthdays, Christmas or the anniversary of a death. One way to respect and acknowledge these feelings is by arranging visits to a cemetery or other place associated with the loved one.
     
  • Watch for signs of delayed or prolonged mourning. If these signs are detected, approach your general practitioner or social services. Unresolved grief needs specialist help.
     
  • If your husband, wife or partner dies and you are now caring alone for someone with learning disability and experiencing difficulties approach your GP. They can help in finding respite care, and/or day care tailored to the needs of the family.
     
  • There is a tendency for persons with learning disability to blame himself or herself for the loss of the loved one. This may manifest itself in depression, guilt, anger or problem behaviours.  Be aware of this and help them through by comforting them, listening and offering reassurance. If you experience difficulties handling this situation approach professional or staff at Day Centres.
     
  • They may cling to other family members for fear of losing them after the loss of a loved one. Be aware of this possibility and help the person to express their feelings so that you can reassure them.
     
  • Whenever possible, try to talk about the loss to the bereaved individual. Photographs and videos and books like When Dad Died or When Mum Died are extremely useful in helping people to express their emotions. Other methods are making a life book and personal album using photographs, drawings and cuttings.
     
  • Helping someone who is grieving can pose a major problem when they have multiple physical and sensory handicaps.  Profound physical and sensory disability may make it difficult for them to understand verbal explanations of loss. Physical touch and cuddles can be extremely comforting.  The touch or smell of items, such as blankets, rings or watches used by the person who died, may help to bring them back to mind and these should be made accessible.

What Can Staff Do?

  • Follow all recommendations to the families in the previous section.
     
  • Be aware of any sudden change in mood, behaviour, eating and sleeping habits. These could all relate to grief reaction. If these symptoms are prolonged, delayed or intense, contact professionals for advice and management.
     
  • Try to arrange a group of fellow residents who have suffered a similar loss. This may help them to express their feelings. Involve carers and friends in what you are doing, as this will give them the opportunity to discuss any issues raised between the group sessions.
     
  • Arrange visits to the dead personís family on anniversaries and birthdays, or invite family members in on these occasions. Encourage them to talk about the dead person.
     
  • Be aware that mourning is not a brief process. It may take a long time for the person with learning disability to work through feelings of loss.
     
  • Try to maintain a normal lifestyle for the bereaved person during the mourning process, as this helps to minimise feelings of loss.

This information has been adapted from ĎBereavement and Loss in People with Learning Disabilitiesí from the Oxfordshire Learning Disability NHS Trust.

Written by Dr Raj Nagraj, MBBS, MRC Psych, DPM and Bala Moddia RGN RMN, RNMH, Dip N