Death can change everything – priorities, perceptions, abilities, view of the world, view of ourselves, relationships and so on. Sudden death brings with it the added dimensions of being unexpected, untimely and sometimes traumatic. The shock of the death can also be exacerbated because the family had not been told of any risk – or even told there was no risk!

In addition, with sudden deaths the bereaved are thrust into an unfamiliar world of investigation into the death. This can have a considerable impact on the bereaved particularly when the body is taken away and they are unable to see and spend time with the deceased. At best unhelpful, this situation can also be detrimental.

So, it is not surprising that those who contact the support team of Epilepsy Bereaved feel their world has fallen apart and is, perhaps, frighteningly out of control. Everyone’s reaction is different, as is their way of grieving. However to begin with people generally want information and answers to their questions – what is SUDEP? Why weren’t they told about SUDEP? How could this happen? Could they have saved their loved one? Why did resuscitation not work? They may also want information regarding the legal process, the post mortem, the coroner, the inquest, and their lawful rights. We can explain legal procedures and requirements since families can feel too daunted and upset to ask questions from the authorities.

Research commissioned by Epilepsy Bereaved from the College of Health with bereaved relatives (Kennelly & Riesel 2002) reveals the emotional impact on the family ranging from shock and devastation, to guilt, anger, difficulty accepting the death, and loneliness. Time and again, as the family support manager, I have been told how helpful it has been for people to discover they are not on their own. Others have died from epilepsy and so there are people out there who have also experienced the unthinkable. This helps to lessen their sense of isolation.

For some people it is very important to talk about what has happened and the effect on them. They want, and need, to express the strong emotions they are feeling particularly to someone who had not been personally involved in any way prior to the death.

Calls to our contact line or emails to the charity from bereaved relatives are managed by myself as family support manager. Family support volunteers are also involved in our work. These volunteers are at least two years beyond their own experience of bereavement and are trained in listening and befriending skills. For newly bereaved people talking to someone from the family support team regularly over a period of time helps them adjust to the huge changes in their lives. Knowing that the listener really does have an understanding of their experience can reassure them that they are grieving rather than disintegrating or becoming mad. It also indirectly gives hope that they, too, can have a future.

After receiving information some bereaved people want to grieve by doing rather than talking so we believe in developing the charity’s work to mirror the needs of those in contact with us. The charity produces two magazines a year which include their writings, poems and other contributions. People can also be directed towards focused activity within the Education and Awareness section of Epilepsy Bereaved. They are offered a range of opportunities such as running an information table or joining our speakers team.

Each year we organise several support group meetings on Saturdays in different parts of the country. This gives our members a chance to meet with others from their area and beyond, who have had similar experiences. These occasions are structured to include plenty of informal time, around refreshments, when those attending can meet and chat with each other. It is not uncommon for people, especially first-timers, to arrive saying they need to leave early but then to stay the whole time. This shows the value they have found in meeting together. Some want to talk to many different people while others prefer to say very little. All approaches are respected, and we in the family support team do our best to enable everyone to benefit as much as possible. Interaction and contribution are also key features of the more structured part of the day, as is flexibility regarding the programme and its contents.

Every three years Epilepsy Bereaved holds an inclusive memorial service. This is another occasion for meeting together for remembrance of our loved ones, celebration of their lives and recognition of their deaths.

Within the family support team we are very well aware of our limited resources. But, rather than being daunted, we are eager to do what we can to help others bereaved by epilepsy.

Written by: Patricia Johnston
Family Support Manager, Epilepsy Bereaved, UK

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.