Grief-Fact-Sheet

BINSA Information on Grief

Acquired brain Injury (ABI) can mean the beginning of many new and often bewildering experiences for those close to the injured person, one of these is the process of grief.

What is grief?

Grief is the emotional response to loss and changed situations. These feelings include anger, sadness, guilt, despair, helplessness, depression and are normal reactions to an abnormal situation. Some people are able to pick up the threads of life and move on, others may feel lost. They may at times feel free of distress only to be plunged back into sadness. Although people experiencing grief are sometimes said to be not coping, this may in fact not be true.

The experience of grief will differ - it may be private, for those who wish to deal with their own feelings, or may be shared with others—in all cases reflecting the personality, beliefs, values and culture of the person who has experienced the loss.

Such strong emotions may not have been experienced before and can cause people to act differently from their usual behaviour. Quiet people may become angry and abusive or an outgoing person may become quiet and withdrawn. It is not uncommon to wonder if they are becoming mentally ill. People may go through a stage of ‘denial’, where grieving does not occur because the person ‘denies’ the loss or holds unrealistic hopes.

While it is possible for grief to be a barrier to resuming many of the functions of life, this need not be the case. It is important to remain hopeful. Accurate information will help in deciding what can be hoped for. If feelings become a barrier to normal living, or if they persist as a controlling force in everyday life, counselling may be helpful. Often it can help to just talk. The feelings of grief usually lessen with time, as adjustments are made to the new situation.

However, grief may reoccur or be unexpectedly triggered by other life experiences.

The initial shock Any unexpected, traumatic event causes shock. Emotions may range from numbness and inability to believe what has happened, to distress, anger or fear. This is a time of crisis and it’s not unusual to feel helpless. Comfort and practical help from those close to the person and the family, as well as from professionals can assist.

Learning about brain injury Generally people have little knowledge about brain injury. The injured person may be in a coma, or be unaware of what is happening. Those around the person begin to learn about brain injury, and what it will mean for them.

Along with feelings of joy and relief that the person is alive may be the realisation there is likely to be disability.

The medical staff will find it difficult to give a definite prognosis and if pressed, may describe the worst possible outcome so false hopes are not raised. Families may wonder how to deal with a loss that is not certain.

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BINSA Information on Grief

The person has not died, yet may not be the same as before the injury. Intense feelings of distress, uncertainty, and a strong sense of loss are common. Others may feel a sense of hope, which will strengthen as the person improves. Some may feel calm and able to give support to others or may be sustained by religious or philosophical beliefs. It is important to have the information, support and understanding that is most helpful to you.

To achieve this it may help: •

if several people are involved, make one or two responsible for obtaining information and asking questions of staff

•

to identify one or more from the staff to talk with

•

to leave a notebook by the person’s bed for people to record significant achievements, visits, observations.

(This may be of great value to the person later in retracing events.)

•

to deal with the situation one day at a time, and one task at a time to lessen stress—use staff to help with any practical problems experienced

•

to accept offers of practical help from friends and others

•

to use staff, particularly the social worker, or someone you feel comfortable with to discuss your feelings

•

to talk with others who have experienced the trauma of brain injury

•

to allow time for adjustment to the situation.

No-one is prepared for brain injury!

Uncertainty may persist for some time including the rehabilitation period after the person leaves hospital, depending on the severity of injury. Throughout this time, there may be continued grieving and a sense of loss, the nature and extent of which is not totally clear, in a situation which is always changing. Many people have already coped with crisis situations in their lives. Recalling that this has been done, and remembering what strengths were used then can help you feel more confident in dealing with the situation.

Grief, loss and adjustment For the injured person, the extent of grief may be determined by the level of awareness. Some brain injuries reduce ability to experience emotion or emotions become a focus for the person. Some may reduce the person’s ability to control emotion or to express it in ways that are acceptable to others. The task of grieving and adjusting to loss is complex—it means incorporating the ‘new self’ with the previous self image. They may be adjusting to disabilities while still perceiving themselves as the ‘old’, non disabled, person. Many need to deal with enormous frustration, fear and anxiety.

Losses may include physical function, cognitive function, relationships, roles and status, confidence and self esteem, or a loss of control in making even minor decisions that affect daily life. It may be difficult for the person, because of the particular injury, to clearly identify losses, or their meaning. It is possible, feeling depressed, sad and in desperation about that which is lost, suicide may be considered, or a wish that they had died when the injury occurred.

The loss of friends who cannot relate to the ‘new’ person may be an extra cause for sadness. Younger people can have a great sense of being left behind while their peers move on through new experiences and phases of their lives. The person needs understanding, encouragement and sometimes professional counselling. It is important to focus on abilities at these times, and to look to the future.

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BINSA Information on Grief

Grief in this situation may be very different from any that has been experienced before. There are no rituals of expression (such as a funeral) to allow acknowledgment of loss. The grief is for someone who, in a sense, has been lost yet is still present.

Grief may return unexpectedly, on anniversaries, or when there is a sudden reminder of that which has been lost.

Friends may find this difficult to understand, and believe that the grieving period should be over. Family members may grieve at different rates, and for different losses. It may seem that as changes occur over the life cycle, the grief can never be finished and put aside.

Adjustment to grief and loss has different meanings for different people. There may come a time when both families and the person can say farewell to the ‘old person’. For some there may be a point where a symbolic act may be helpful, such as disposing of reminders of the person’s past. People can then move forward and develop an optimistic outlook for the future. For some there may just be a gradual process of adjustment as time passes.

Some may be able to attribute meaning to the loss, making them feel stronger than previously. Others may not, yet find they can still go on—although sadness may persist, optimism can accompany it.

For the person with brain injury, the road to adjustment may be long. There will always be new challenges and experiences and as each challenge is met it can help raise confidence and the desire to continue moving forward.

Adjustment may mean diverting energy into helping, in many different ways, such as caring, volunteering, lobbying for more services, or simply living life as it comes. It is important to remember there are many people with brain injury in our community who lead meaningful and productive lives.

Where to find help While in hospital, or having rehabilitation, a social worker or psychologist will be available within the agency to provide counselling and support. If this is not suitable, private practitioners can provide this service. Your doctor can make a referral.

Help is also available from: Brain Injury Network of South Australia Inc. (BINSA) Ph: 08 8217 7600 Carer Support Services provides practical assistance as well as support to those caring for a disabled person.

Disability Information Resource Centre (DIRC) provides information on various aspects of disability and where to find help. They also have a library where some information about brain injury may be found.

195 Gilles Street Adelaide SA 5000 Ph:

08 8236 0555 / 1300 305 558 (SA only)

Fax: 08 8236 0566 Email: dirc@dircsa.org.au A clearly written and useful book is: Head injury—The facts—A Guide for Families and Caregivers— Dorothy Gronwall, Philip Wrightson and Peter Waddell, New York, Oxford University Press 1990.

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BINSA Information on Grief

Waiting on information from Roger Rees for more current information for this section - have emailed him.

Mariann contacting him.

There are many grief and loss specialists throughout South Australia which can provide support and counselling.

For a comprehensive list, see The Yellow Pages – Grief and Loss.

A personal experience with grief Nothing can prepare a family for the news of an accident to a family member resulting in severe head injury. We were notified by telephone and given minimum details, an experience shared by many. It seems strange that the familiar word accident had more impact on us than the unknown factor of head injury. That was to change dramatically as a major Adelaide public hospital became all too familiar as our only world, even though it was quite foreign to us.

Within 24 hours our independent son was no longer in charge of his life and we felt helpless to assist him. Thrust into an alien existence of technology, efficiency, unknown sounds, tubes, procedures, terminology and tension, we soon came to know what ICU meant, and ABI, but it would be many months before we could begin to accept the full implications.

Our days consisted of a series of contradictions as we experienced remoteness from some but a closeness with our son; an inner strength but powerlessness within the system; stillness and movement; hope and despair; silence and sounds; anger and tolerance; questions asked but not always answered. The ebb and flow of our lives became a ritual of coming and going, watching and waiting, snatching a meal, a private time with private thoughts, just getting through each day and night meant the present moment was the most important. Others who have been through this type of experience will understand. Now, some years later, we can think in longer time spans, helped by the positive images of courage, determination, devotion, compassion, faith and healing in many forms.

I was surprised when asked if I had ‘done any grieving’ at a time when our son was progressing and we were coping. After a further sadness, I realised the fragile balance of my life needed attention. Following serious consideration I decided the time was right to attend a course on grief counselling organised by a local funeral bereavement service. Although disturbing at first and sometimes confronting, the long-term benefits were tremendous.

We were a group of eight, all new to each other, who laughed and cried together, shared, respected and listened, with the guidance of well-trained leaders. The individual causes of our grief were quite varied but all related to loss and feelings of inadequacy in dealing with it.

The most valuable outcome was getting back in touch with myself without fear of criticism or expectation.

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