Get Help Get information Information for carers & family Dealing with bereavement The Encephalitis Society runs a virtual gathering for bereaved families on 10th August between 6-7 pm (UK time). If you would like to register or find out more please email Laura, our Wellbeing and Volunteer Manager at [email protected] Download PDF Dealing with bereavement By Dr. Ava Easton, Encephalitis Society It is a shattering blow when someone who you know or love dies. Whenever and however death comes, it brings with it intense and painful feelings. Each and every loss is personal. We are all unique as the relationships we share with others are. Although bereavement affects us in very different ways, the experience of others may help us to acknowledge and face the reality of our own feelings, while reassuring us that coping with the loss in our own way is acceptable and normal. Bereavement—feelings The initial feeling following someone’s death from encephalitis may be one of numbness and disbelief. This feeling may last some weeks. It may help you to cope with the tasks and arrangements that need to be undertaken at this time, as well as enabling you to attend the funeral. Intellectually you know what has happened but emotional recognition will come later. In these early days, family and friends often provide support and encouragement, but gradually they need to return to their own lives. This can leave you with an overwhelming awareness of the reality of your loss. With this reality can come distress, sadness, physical pain, and crying. Your self-esteem and confidence are rocked. You are left yearning to return to life as it used to be. There may be real fear and bewilderment at the strength of your feelings. A common feeling is anger: against your faith, the hospital, and the doctors or even against the one who has died for daring to leave you with so much pain. Bereavement can be followed by a continuous and disbelieving search for the person we once knew, and we can be left feeling frustrated and angry. Bereavement nearly always brings regret. Death frequently leaves us with feelings of unfinished business, or the wish that we could have a second chance to do things differently. There may be guilt for what we may have said or not said, done or left undone. Guilt may also arise if a sense of relief is felt after a painful or distressing illness. These feelings are natural, understandable and common. It is all part of trying to make sense of what has happened. People’s reactions to you may change because of their embarrassment and uncertainty. They may expect and want you to come to terms with your grief more quickly than you feel able to, or they may simply be feeling powerless to remedy your loss. Remember that whatever you are personally feeling, it is right for you; it is completely normal and you will eventually learn to cope with this tragedy no matter how you feel right now. The various stages of mourning overlap and most people find their ability to cope improves over time. People from other cultures may well deal with death in ways that seem unfamiliar. People in different parts of the world have developed their own ceremonies and ways of mourning. Some see death as part of a circle of life. Some rituals or ways of mourning may be public and demonstrative, others may be quiet and private, and some may have fixed times whilst others do not. Whatever way a person chooses to express their grief, you can almost guarantee that the feelings differ little. What helps? No one is left untouched by bereavement, each member of the family will be affected, to a greater or lesser extent, each will want to help and support the others but each will have an uncertainty of how to do this. Each person will react to, and will deal with their feelings, in different ways. Perhaps by discussing your own worries with a friend, counsellor, GP or a member of the Encephalitis Society, you may be able to find ways of helping yourself as well as your family. Life is shaken up by loss and you may suffer panic attacks, loss of appetite and sleep, nausea, aching limbs etc. If this state continues over several days or weeks it is advisable to visit your doctor. Whatever you do, try not to neglect yourself: allow time and space for the grieving process. When someone close to you dies it can be as if a part of you dies as well. There is a period of time when you may feel very low and it may seem as if you are carrying a heavy burden of pain and sadness. Things may appear hopeless. Don’t give up hope, everything is temporary and no mood lasts forever. Children and bereavement Children may not always comprehend the implications of death or bereavement, however they still feel loss in much the same way; they will still grieve and feel distressed. Their period of mourning may be shorter than for adults. Children may feel responsible for the death of a relative and may need a good deal of reassurance. Young people may not speak of their grief because they can’t find the right words or because they do not want to make the adults around them feel worse. The grief of children and adolescents and their need for mourning should not be overlooked when a member of the family has died. It may help their understanding to include them in the arrangements and attendance at the funeral. Family and friends: how they can help Family and friends can be of most help by spending time with the bereaved person. Being there during painful times, listening to them and sharing good and bad memories show you love and care for them when words are not enough. Don’t tell people to pull themselves together or that life goes on. Allow people to mourn in the way that is right for them. In time they will get over it but right now they may cry, scream, repeat the same stories a lot or simply be quiet. If you don’t know what to say or how to help, tell the bereaved person. This allows them the opportunity to tell you what they need. Don’t avoid talking about the person that has died, this will only add to their feelings of isolation and grief. You may be able to help the person in a practical way: childcare, cleaning, shopping or helping the person with the responsibilities that may once have been the remit of the deceased person for example. Remember that birthdays, anniversaries and Christmas can be sad and lonely times – friends and relatives can make a special contribution on those occasions. Organisations that can help The Bereavement Trust runs a helpline for those who have been bereaved. Contact details: Telephone: 0800 435 455 6pm-10pm every evening, The Compassionate Friends provides helplines, a forum, leaflets, legal support, siblings support and retreats to parents and their immediate families after the death of a child/children of any age and from any cause Contact details: UK Helpline: 03451232304; Northern Ireland Helpline: 02887788016 Cruse Bereavement Care can help with support, counselling, education, advice and information. Counsellors are available by phone or email. They run with local cruse branches that provide a range of services including individual and group support. Contact details: Helpline: 0808 808 1677; Email [email protected] WAY is a national charity in the UK for men and women aged 50 or under when their partner died. It’s a peer-to-peer support group run by a network of volunteers who have been bereaved at a young age themselves, so they understand exactly what other members are going through. Contact details: Email: [email protected] MuchLoved is a charity which helps create your own unique, beautiful and lasting memorial website in memory of your loved one. Rosie Crane Trust provides a number of services aimed at supporting bereaved parents Helpline: 0146055120 Winston’s Wish is a childhood bereavement charity helping bereaved children to make sense of the death and rebuild their lives. Helpline: 08088 020 021 Useful books for your reading available from Amazon Through Grief by Elizabeth Collick ISBN 0232516820 Facing Grief: Bereavement and the Young Adult by Susan Wallbank ISBN 0718828070 The Early Days of Grieving By Derek Nuttall ISBN 0906584299 A Grief 0bserved By C S Lewis ISBN 0571066240 What to Do When Someone Dies By Paul Harris ISBN 0852028164 I Will Remember You: What to Do When Someone You Love Dies: A Guidebook Through Grief for Teens By Laura Dower ISBN 0439139619 You’ll Get Over It By Virginia Ironside ISBN 0140236082 When Parents Die By Rebecca Abrams ISBN 0415200660 Muddles, Puddles and Sunshine This is an activity book for children to help them deal with the death of someone close. You can also order it from Winston’s Wish (please see contact details above) First Year, Worst Year: Coping with the Unexpected Death of our Grown-Up Daughter by Prof. Barbara Wilson, OBE and Michael Wilson ISBN: 978-0-470-09359-7 FEEDBACK Please tell us what you think about this information by filling in this very short feedback form FS041V4 Dealing with bereavement Date created: May 2003; Last updated: August 2019; Review date: August 2022 Disclaimer: We try to ensure that the information is easy to understand, accurate and up-to-date as possible. If you would like more information on the source material the author used to write this document please contact the Encephalitis Society. None of the authors of the above document has declared any conflict of interest which may arise from being named as an author of this document.