Living with bereavement

Coping with the death of someone important in your life is a deeply personal experience. We are here for you.

When someone you love dies suddenly, it is a devastating experience. Nothing can prepare you for the emotions that follow. If you are reading this because someone you know has died, we are so sorry for your loss. We are here for you.  

Everyone grieves in their own way. Grieving, however we do it, is a necessary process.  

Our Support Service team are available to support you, your family and friends through your grief journeys.  

Available Monday to Friday, 9am to 5pm, we can speak to you on:  

  • Phone: 080 8800 3344 (UK) / 1800 41 33 44 (Republic of Ireland). 
     
  • Email: helpline@meningitis.org.
     
  • Live chat (bottom right corner of your screen).  

‘It’s okay to cry. It’s okay to scream. It’s okay to have good days. Its okay to have bad days. Everything is okay. It’s not wrong.’ Dawn Canham, Meningitis Research Foundation Ambassador

How you might feel during your grief journey

Everyone’s journey through grief is very unique and personal. People will experience a range of emotions, and these might be quite different to others around you. Grief can be an isolating experience. We have information on how you might be feeling, to help you know you’re not alone in your feelings.  

Shock and disbelief

The feeling of shock following a death can be overwhelming. This can show itself as numbness and withdrawing from those around you, or as uncontrollable crying or despair. Sometimes people experience muscle aches, bodily pain or shivering. It is not unusual to feel there must be some mistake, even if you were there when the person you cared about died.  

Anger

The death of someone you love can make you feel angry. You may have directed this anger at other family members or friends, the doctors or nurses who were unable to save your loved one, or at your faith. You may feel intensely angry with yourself. You may feel angry at your loved one for leaving you.  

Guilt

Guilt is a normal emotion following death, even if there is no rationale of the guilt. Living with the feeling of guilt can be very hard. Meningitis and sepsis are very complex diseases. Sometimes, no matter how quickly treatment is given, it’s not possible to save the person’s life.  

Even though rationally you know you did everything you could, you may be left with a feeling you should have done more. Parents and carers feel responsible for their child’s safety, and may feel their child’s death must have been their fault, however irrational that belief is. Some people feel guilt that they are still alive when their loved one has died. They may feel guilt about things said or left unsaid, or that they were unable to say ‘goodbye’ or ‘I love you’.  

Why?

It can be hard to make sense of what has happened, particularly with meningitis and sepsis which can happen so quickly and unexpectedly. Some people find it helpful by learning more about meningitis and sepsis. If you have any questions you are welcome to get in touch with our support team.  

Others may not feel able to face medical facts until much later.  

Searching

You may feel a desire to be close to the person who has died. This may involve going to places they visited, or holding or smelling items of their clothing or their toys. This is very normal and many people find comfort from the feeling of closeness it brings. 

Some people choose to create memory books and memory boxes to help them feel closer to the person who has died. Collecting items and memories from others may help you all to feel closer to the person and that you are sharing your grief and memory.  

You may find you feel closer to a person by: 

  • Sharing yours and their story on Meningitis in your words. This is a digital collection of stories written by people who have been affected by meningitis. Some people find reading others stories to be comforting and help with feelings of isolation. Others find writing their own story to be a cathartic experience.  
  • Creating a Remembrance Fund. A Remembrance Fund is a unique and personal way of remembering someone special who has died as a result of meningitis or sepsis. They can give your family, friends and community a focal point to remember the person and support Meningitis Research Foundation in our vital work.  

It is quite common to ‘see’, ‘hear’ or repeatedly dream about your loved one, and this reflects the strength of feelings for them.  

Looking forward

Grieving is a normal and often very difficult process for us. Everyone is different, and there is no right or wrong way of dealing with what you are feeling. It may take a long time to feel you are able to live with your bereavement.  

Special occasions may be difficult and birthdays and anniversaries can be particularly painful. Some people find holding events and spending difficult days with others to be helpful, others need to be alone at these more difficult times.  

You can never bring back the person who has died, and the sorrow for their lost life never leaves, but as time passes, the intensity of the pain will change.  

Supporting children in their grief journey

Explaining the death of a sibling or loved one to children can be very difficult for parents and carers. People feel unsure what to say, how to explain what’s happened to children and how much to tell them. Children grieve in their own way, and even very young children who may not fully understand what has happened, will sense that things have changed.  

It’s important that children be told about the death as soon as possible, ideally by someone they are close to. Children often have more understanding than adults expect, and providing very clear and simple information is best. They can then ask questions when they are ready, and at a level of understanding they feel comfortable with.  

Your own intense grief may leave you temporarily unable to provide emotional support for your children. This is completely understandable and it is important that you receive support and look after yourself, which in turn can help you support your children. Perhaps for a time, a close friend or family member that your child feels comfortable with, could step in to give the extra care, time and attention they need.  

Don’t be afraid to show your own emotion in front of a child. It gives your children permission to do the same.  

What not to say

There are many different ways of describing death, and although adults may understand what they mean, children can become confused and get upset. Using simple, clear and consistent language between everyone who Try to avoid phrases such as: 

  • ‘Gone to sleep’. The child may wonder if and when they will wake up, or become fearful of sleeping themselves.
      
  • ‘We have lost…’. This can become confused with the idea of losing and finding something. The child may think they can find the person again if they search hard enough, or may fear themselves becoming lost.
     
  • ‘They have become a star’. This can be confusing and children may ask difficult questions to try and understand. Which star? Why have they done this? Can I become a star? Why can’t I see the star?
     
  • ‘The doctor has taken them away’. The child may not understand where the person has gone and if they will return. They may become scared of the doctors themselves.
      
  • ‘They’ve gone to a better place’. The child may be upset that they haven’t gone to a better place, and why they are in their current place.  

How children grieve

Children often deal with bereavement differently to adults. Your child may get upset at the attention going to the person who has died, or feel the death is somehow their fault. Their behaviour may change. They could become clingy, sad or withdrawn, unable to concentrate, and they may bed wet. Although this behaviour is normal, if these problems persist, your child may benefit from some specialist help.  

Supporting your child

If you have children at school, it is a good idea to tell the teachers there has been a death in the family, and also let the staff know exactly what the child has been told. They can then let you know if they spot any behaviour changes, tell you if the child asks them any questions and mirror the same language and explanations you have given.  

In some schools they are able to offer emotional support to their students in the form of talking or Art therapy. All schools will have a staffed quiet space where they will be happy to support your child if the school day gets a little too much. 

Other voluntary and community sector services are available to help you and your child through their grief. You can read about some of them here, or speak to our support team if you need some different advice. 

Helping children remember the person they have lost

Children may benefit from opportunities to remember the person that has died. Birthdays or anniversaries can be difficult, but can also be planned with the child and other family and friends, to help make the day more special and manageable. You can do things like lighting candles, holding events, meeting others and sharing memories.  

Memory books and boxes containing items, memories and photos can help everyone to remember through their grief. Children may want to add their own pictures or writing.  

They may like to keep items that belonged to the person who died, particularly if it’s something you know they liked or associated with the person.  

Sometimes it can help children and the wider family and friends to get involved in fundraising. You can see our fundraising events here, or contact the fundraising team on 0333 405 6274 or fundraising@meningitis.org

‘The advice I would give to anybody who has been bereaved is just to be kind to yourself. Not to expect things to magically get back to the way that they were. And also not to feel guilty for anything that you’re feeling, because whatever you’re feeling, that’s what you need to experience in order to help get through it’ - Sam, Meningitis Research Foundation supporter

It can feel as though nothing can help you during your grief and you will feel these sensations forever. Although grief never leaves, it changes over time and people learn strategies and ways to manage and cope.  

Meningitis Research Foundation can support you through those difficult times. You may find some of the following useful to you, your family and wider community. 

Meningitis Research Foundation are here to support you through your grief journey. Learn more about our Support Services, team and what we can offer

Meningitis in your words is a digital collection of stories written by people who have experience of meningitis. They can provide comfort, advice, solidarity and empowerment to all who have been affected.  

You can read stories from others and share your own.

If someone special to you has died as a result of meningitis or septicaemia, you can remember them in a unique and personal way by setting up an online Meningitis Research Foundation Remembrance Fund.

Meningitis and me are videos recorded by people whose lives have been affected by meningitis.  

Covering topics including managing grief from different perspectives, they are full of advice, wisdom and guidance from those who have experienced the heartbreak of meningitis.  

Other support services

As everyone’s grief journey is different, so too are the support and services they need. We know there will be times when you need different and more specialist support than what we can offer. The following organisations can provide different services and support that may be useful to you and your family. 

Anam Cara

Supporting parents in Ireland and Northern Ireland after bereavement. 

www.anamcara.ie 

+353 (0)1 404 5378

info@anamcara.ie

Child Bereavement UK

Supporting families through the death of a child, and when a child is grieving.

www.childbereavementuk.org

0800 02 888 40 

helpline@childbereavementuk.org

Cruse Bereavement UK

Supporting people through their bereavement and grief.

www.cruse.org.uk

0808 808 1677 

Cruse Bereavement Scotland

Supporting people in Scotland through their bereavement and grief.

www.crusescotland.org.uk

0808 802 6161 

support@crusescotland.org.uk

FirstLight

Supporting families in Ireland through sudden bereavement.

www.firstlight.ie

+353(0) 1 8732711 

referrals@firstlight.ie

Grief Encounter

Support for bereaved children and young people. Have offices in London and Bristol. 

www.griefencounter.org.uk

London: bereavementsupport@griefencounter.org.uk | 020 8371 8455 

South West: southwest@griefencounter.org.uk | 0117 985 3343 

WAY

Support for anyone who’s lost a partner before their 51st birthday.

www.widowedandyoung.org.uk

0300 201 0051 

Winston’s Wish

Supports children, teenagers and young adults (up to age 25) through their grief.

www.winstonswish.org

0808 802 0021 

ask@winstonswish.org

 

Getting information and support  

The Support Services team are here to help. Please do get in touch if you have any questions, need advice or guidance, or want to talk through your experience.   

Available Monday to Friday, 9am to 5pm, we can speak to you on:  

  • Phone: 080 8800 3344 (UK) / 1800 41 33 44 (Republic of Ireland). 
     
  • Email: helpline@meningitis.org.
     
  • Live chat (bottom right corner of your screen).