Grief and Loss

The death of a child is an incredibly distressing experience that is a very individual journey. You may experience a variety of emotions and feelings at different times. There is no right or wrong way to grieve, nor any set time scale for how long the grieving process may last.

This article aims to provide you with information, resources and organisations and methods that may be helpful to you during this difficult time. However, it is important to remember that there is no normal when it comes to grief. The way that you find to live with your loss will be individual to you, your experiences, and your beliefs.

Getting Support

The trauma of a losing a child has a significant impact on health, wellbeing and relationships with family, friends, and significant others. It is crucial that you find the support that best meets your needs.

The type of support that is best will vary from person to person. Here are a few types of support that may benefit you:

Support Groups

There are many support groups available both for general and specific types of loss. You may find comfort from being part of a community who can understand your grief.

Some people may find it intimidating to join a support group. However, there is no pressure to speak or share anything, you can attend and just listen or share only what you are comfortable with.

Here is a list of ways to find support groups:

• Your local council can help you find bereavement services in your area. Search here.
• The Compassionate Friends and The Good Grief Trust both offer interactive maps to help find support groups near you.
• Many Cruse Bereavement branches offer peer to peer support. You can find your local Cruse Bereavement support branch on the NHS website.
• Most hospices provide bereavement support to families after a child’s death. This may include peer support. Get it touch with your local hospice to find out.
• Hospitals should provide bereavement support following a child’s death. Get in contact with the hospital to ask what support is available. They may be able to signpost you to support groups in your area or offer other types of support.
• A charity for your child’s condition may have ongoing support for parents, this may include a bereaved parent support group.

Therapists or Counsellors

After the loss of a loved one, counselling can help individuals who are struggling to work through the grief process. Talking to a professional with experience in grief counselling may help you work through the intense emotions that you might be feeling.

Here are some free grief counselling options available:

• Sue Ryder offer a free online bereavement counselling service.
• Your local branch of Cruse Bereavement Support may be able to offer one-to-one counselling.
• Marie Curie Hospices have bereavement support services for families, including bereavement counselling from trained volunteers.

The NHS also have lots of information and support for mental health. Click on the yellow box for more about this support and your local services below:

If you would prefer to look for a counsellor privately, search the counselling directory or the British Association for Counselling and Psychotherapy online directory. Many therapists have their own websites explaining how they work and what to expect.

If you or your partner are employed, you may want to check if either of your organisations have an Employee Assistance Programme. If they do, then it may offer a set number of free counselling sessions to staff and their partners. Ask your manager or human resources department for information.

Faith-based Groups

If you are religious, you may find support in your community or with the leader of your church or temple. They may be able to provide suggestions for rituals or prayers that can help. Because of their role in the community, they may have extensive experience with loss.

Online Communities

There are many Facebook groups, websites and chat rooms that allow you to post your thoughts and read the posts of others who have suffered a similar loss. Through this community, you may feel less isolated and find words that describe what you are experiencing.

The most appropriate community to join may depend on your child’s condition as parents from in these groups may better understand your situation. When researching a community to join, it is important to make sure that it is a safe space for you to share.

Here are a few more general online communities for bereaved parents that we know about:

• The Compassionate Friends have an online forum where parents who have lost a child of any age and from any cause can ‘talk’ with other bereaved parents in a safe, private place.
• Together for Short Lives have a ‘Still their parent’ Facebook group for bereaved parents who have carer for a child with a life-limiting condition.
• The Sands Online Community provides a safe space for bereaved parents who have lost a baby to connect with each other and share their feelings.

These child bereavement services may also be helpful for helping you to access information and support:

If you need immediate support, call Samarians on 116 123 for free. They are available 24 hours a day, 365 days a year.

Understanding And Navigating Your Feelings

Loss of identity

In addition to the loss of your child, you may be also be feeling the loss of your parenting identity. It may be helpful to remember that once you have been a parent, you are always one, and the love for your child remains a part of your identity.

Some parents’ lives may have centred around their child’s needs, and this loss of identity as a caretaker may leave you feeling lost about what to do now. This is a massive change to adjust to and it is natural to question your role in life.

You may also feel a loss of the community that you developed from the special services the child received and the network of parents with similar needs. Many parents find great comfort in staying connected to their complex-needs network and finding meaning by giving back to their communities.

Feelings of guilt

Sometimes, when you find yourself smiling or laughing, you may feel guilty that you can do this. You may also start think about the future and how to spend that time.

Thinking about future with hope and without guilt is good, but can be hard to do. It is important to remember that living a different life doesn’t lessen the love that you still have for your child.

Surviving children living with a disability

You may feel anxiety if you have a surviving child with a disability, even if it is not the same condition as their sibling. You may feel:

• Anxious for future
• Loss of confidence in parenting abilities
• Feel too much out of control

It is important to face these fears and seek support. You could contact your GP for advice or one of the above organisations.

Supporting Siblings Through Grief

Grief can be confusing for siblings. Like you, they may be feeling a rollercoaster of emotions from sadness and anger to disbelief and guilt.

It is important that they understand why you are crying and upset, and that this is not their fault. Sometimes brothers and sisters believe they are responsible for what has happened. They need to be given an explanation that they can understand and does not leave them with unnecessary fears about hospitals, or their own safety.

Support for grieving children

Here are a few organisations that provide support to siblings and children (up to the age of 25):

• Child Bereavement UK offer free, confidential support for individuals and families; groups for young people; bereavement related books and resources; and short guidance films to help children understand and cope with their loss.
• Winston’s Wish provide online grief support to children, teenagers, and young adults.
• Grief encounter  offer different types of support depending on the child’s age, including one to on counselling, therapeutic group work, fun days, residential camps, and workshops.
• Hope Again is the youth website of Cruse Bereavement Support. It is a safe place where you can learn from other young people, how to cope with grief, and feel less alone.

Memory boxes

The Harvey Hext Trust A Siblings Wish provide personalised, memory boxes to help bereaved children remember their sibling who has died. These boxes are a simple, but effective way of helping a sibling remember their brother or sister and preserve their very precious and personal memories.

This service is free. The Memory Boxes are supplied to families through bereavement service referrals; they do not sell boxes directly.

Ways To Find Comfort

Focusing on your child’s life rather than just their death can give your child an everlasting presence and maintain a continued bond with your child after death.

You may find that one of these ways of remembering your child may bring you comfort. These are just a few suggestions that others have found helpful during, you may have a different way of remembering that is better suited to you and your family.

• Writing down memories of your child or your child’s life story in a special book, or making a special photograph album or video
• Telling stories about their life on social media or in person
• Having a special place in your home where photos or favourite personal items can be displayed
• Lighting a candle on particular anniversaries or special times of the year
• Having your own memorial service. You may wish to arrange your own formal (or informal) service of remembrance with family and friends present. There may be readings, poems and music that have a particular significance for you and link with your child
• Planting a tree

It is important to note that if your remembrance activity starts to become a trigger for sad memories and flashbacks, or you are spending long periods of time on it, it may be best to take a break.

Essential Arrangements – Steps and Support

Given the intense emotions that you will be experiencing following a child’s death, it is difficult not to be completely overwhelmed with the practical issues that need to be sorted out.

You may not know where to start or feel so consumed by grief that you don’t feel you can deal with the practicalities on top of this.

Here is a list of practical steps that you may need to take following a child’s death:

Step 1 – Register the Death

You’ll be contacted by the medical examiner’s office to confirm you can register the death.

You need to register the death within 5 days (8 days in Scotland) of being contacted. This includes weekends and bank holidays.

Step 2 – Tell the government about the death

You can use the Tell Us Once service to inform all the relevant government departments when someone dies, if you live in England, Scotland or Wales.

The Tell Us Once service does not work yet in Northern Ireland. Click here to find out more about who you should tell if you live in Northern Ireland.

If you cannot use Tell Us Once, tell the government yourself.

You’ll also need to tell banks, utility companies, and landlords or housing associations yourself.

Step 3 – Arrange the funeral

The funeral can usually only take place after the death is registered, unless the death has been reported to a coroner.

You can pay for a funeral director to arrange the funeral or do it yourself. Get in touch with The National Bereavement Service if you need help being signposted to the nearest Funeral Director to you.

You could also contact your local council to see if they run their own funeral services. Some local councils do this alongside local funeral directors, for example for non-religious burials.

Funeral costs can include:

• funeral director fees
• things the funeral director pays for on your behalf (called ‘disbursements’ or ‘third-party costs’), for example the person who performs the funeral service, crematorium or cemetery fees, or a newspaper announcement about the death
• local authority burial or cremation fees

MoneyHelper has information about funeral costs and how to reduce them.

The following support is also available to help with funeral costs:

Step 4: Deal with your own benefits, pension and taxes

Your tax, benefit claims and pension might change depending on your relationship with the person who died.

Check how benefits are affected if a child dies.

Step 5: Apply for probate

You might need to apply for probate before you can deal with the property, money and possessions (the ‘estate’) of the person who died.

Check if you need to apply for probate.

Organisations which can provide help

The National Bereavement Service can provide free practical support and advice.

Child of Mine also has an archive of information about practicalities when a child dies.

The Government website has a step by step guide of what to do when someone dies, if you need additional information on any of these steps.

Carrying out these practicalities is emotional. You might like to think about asking a family member or friend to come with you to do these tasks.

Further Information

For a list of books to help with grief and loss, read our Books for Everyday Situations article.

The information in this article was correct at the time of publication but may be subject to change.

If you have any comments, ideas, or suggestions about this article, please contact us at [email protected]

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