If you need bereavement support as a result of motor neurone disease (MND) or Kennedy’s disease, the following options may help. Emotional and practical support is available. Seek support in a way that feels right for you.
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“Grief is very individual and not everyone will go through every emotion, but an awareness of those emotions is valuable.”Family carer of someone with MND.
What should I expect?
When someone close to you dies, the impact can feel very distressing, isolating and confusing, and there is no right or wrong way to express grief. Bereavement support is available.
How you react is likely to be influenced by your beliefs, family background and personality. It will also be affected by your relationship with the person who died and those around you. The feelings of other people may affect how you express your grief, for example when young children are involved.
Grieve in your own way
You may hear people talk about the ‘stages of bereavement’, such as denial, anger, bargaining, depression and acceptance. However, everyone is different – allow yourself to grieve in the way that best helps you to cope.
“Managing grief is intensely personal and other people’s experiences shouldn’t be used as a template for your own grief.”Carer, supporting a person with MND
Ask for a health check
Difficult and mixed emotions can feel overwhelming, but accepting these as natural expressions of grief can help. Getting a health check may also be important if you have been under pressure in a caring role or through taking responsibility for end of life and funeral arrangements.
See our guide, Finding your way with bereavement for more thoughts on grieving, likely emotions, how to approach conversations about this, how to support children through grief and suggestions for your own support.
See the Useful organisations drop-down on this page, for suggestions about bereavement support and other specialist help.
Our Information resources include further publications for carers, family members and children close to someone with MND or Kennedy’s disease.
Our MND Connect helpline team can also help you with information, support or just a chance to talk.
What is anticipatory grief?
When someone you love is told they have MND, a period of shock is likely to follow. Sometimes a sense of relief too, in finally finding out what is happening.
Even as you adapt to this news, you may grieve from this early stage and throughout the course of the disease.
“Our grieving started once my husband was diagnosed.”Carer, supporting a person with MND
This is called anticipatory grief and it can take its toll on your emotions and health. It can affect everyone in your close circle, including the person with MND.
You may all grieve for the person diagnosed, for the lives you lived prior to MND, and for dreams and plans that have to change. It can also be a time of sadness and fear for what lies ahead.
Open discussion may not feel easy, but it can help everyone involved to share feelings and support each other. This can lead to greater understanding, especially if emotions become harder to manage.
If needed, ask your GP for help. It may be possible to refer you to counselling.
If there is a waiting list, you may all be able to discuss your concerns with a hospice or palliative care team. Many people are wary of this type of care, as it is often associated with the final stages of illness and dying. However, palliative professionals are trained to support the best possible quality of life during a life-shortening illness. Their help can bring physical, emotional and practical benefits, including support for close family.
Often, a hospice or palliative care team will continue to support close family members after someone has died.
“I am so lucky to have the hospice. One and a half years since his death and they’re still supporting me.”Carer, supporting a person with MND
Explore our other Information resources to find wellbeing support for carers, family members and children close to someone with MND or Kennedy’s disease.
Our MND Connect helpline can also help you with information, support or just a chance to talk.
You may also find the following links useful for anticipatory grief or pre-bereavement thoughts:
The Good Grief Trust provides pre-bereavement advice and videos of people with various conditions talking about their thoughts on approaching and preparing for death.
The British Association for Counselling and Psychotherapy (BACP) provides guidance to help you support children and young people who may be affected by anticipatory grief.
What support is available?
See our guide, Finding your way with bereavement for suggestions about support. The guide also contains practical guidance about what to do when someone dies, and financial support, such as funeral and bereavement benefits.
See the drop-down on this page How can the MND Association help me? to find out more about our support.
At a loss is an organisation that guides people who have been bereaved to appropriate support services, resources and counselling.
Your GP is also a good place to begin seeking help. If you have been in a caring role, you may have been under pressure and facing challenges for some time. The impact of grief on top of physical exhaustion can affect your health.
Your GP may be able to refer you to counselling where needed, but there may be a waiting list. If the person who died was linked to hospice or palliative care, their team may provide grief support for close family members.
Intense emotions usually ease in time, but this adjustment cannot be rushed. If they do not ease, or feel worse, accepting support can help you work through them.
See the Useful organisations drop-down on this page, for suggestions about bereavement support specialists.
How do I get appropriate support for my faith or belief?
We recognise that people from different faiths have different ways of grieving. There may also be funeral or mourning rituals to observe.
If you need grief support for a particular faith or religion, ask your faith leader or local hospice organisation for guidance. Funeral directors can also advise on funeral arrangements and memorial services.
See the Useful organisations drop-down on this page, for suggestions about bereavement support specialists.
Our MND Connect helpline team can also help you seek appropriate support.
How can the MND Association help me?
Our MND Connect helpline team can help you with information, support, a chance to talk, and guidance about our services and external services to suit your needs. Contact the helpline by:
Telephone: 0808 802 6262
Email: [email protected]
We work in partnership with various organisations, including those that specialise in bereavement support. For example At a loss, helping to guide people who have been bereaved to appropriate support services, resources and counselling.
Our services can help
In addition to our helpline, we provide a range of Support services, including:
- local support, including the opportunity to join branches and groups, with other people who have been through similar experiences
- our Association visitors - these trained volunteers offer a range of help that includes bereavement support, by phone, email or home visits, where these volunteers are available
- financial support through a carer or young carer grant, which remains available for 12 months post-bereavement
- our Benefits Advice Service to help carers and bereaved carers identify benefits that may be available
- our online forum, providing a safe space to share support with others affected by MND, including an area for bereavement messages
- our information pages for carers and family members and a further web hub for children and young people, offering resources by age group, and for parents and guardians too.
What should I do next?
As time passes, the emotions of grief usually become more manageable, but this can take a while. If you were a carer you may:
- feel a lack of purpose when your caring role stops
- worry about whether or not to return to work, if providing support meant you had to leave employment
- find the life you had before no longer feels like your life now
- realise your social support network has changed, and want to try different activities or meet new people.
Make changes when they feel right for you. Take time to think through your choices and options, especially with major financial decisions.
How can I adapt?
If you were the person’s main unpaid carer, the skills gained from your caring role may help you adapt to life now better than you expect. Supporting someone during difficult times can deepen your understanding of yourself and your abilities. This can encourage personal growth and a different outlook.
When someone dies, there are immediate actions to take, from death registration, to funeral arrangements and sorting out someone’s estate. Others need to be informed of the death, including family, friends and services. These tasks may not be wanted, but they can provide a sense of structure and purpose through a difficult time.
See our guide, Finding your way with bereavement for practical and emotional guidance on what to do following the death of a loved one.
When these tasks are completed, there can be a period of rest. However, you may feel a loss of purpose and those who gathered in memory of the person may no longer be in constant touch. This can make grief more intense for a time, so give yourself space to accept those feelings. This is natural.
Feelings of grief may continue to be triggered, but this is natural. Extreme emotions tend to calm again. If you have persistent feelings of distress for long periods of time, ask your GP about available support.
We do not necessarily endorse organisations, but the following may help you search for services or information. We have grouped organisations under the following headings to help you find the support you need.
- Bereavement support for adults
- Bereavement support for children and young people
- Funeral planning and advice
- Government and national support
Bereavement support for adults
Search for a bereavement support organisation near you.
Bereavement Advice Centre
Advice on legal and practical steps after someone’s death.
British Humanist Association
Provide guidance and support for funerals where no religious content is wanted.
A charity for elderly and terminally ill people and their much loved pets.
The Compassionate Friends
Support for people who have experienced the death of a child, of any age.
Cruse Bereavement Care
Free and confidential bereavement support for adults, young people and children, with a national helpline and local support from trained volunteers.
Digital Legacy Association
How to manage a person’s online presence after they die.
Down to Earth
Free guidance from Quaker Social Action on affordable and appropriate funerals, and possible government support or charitable funds.
Aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life.
The Good Grief Trust
Online grief support and information, and lists of local services.
Helping people following the death of a loved one with free independent advice.
Provide support for people with life-shortening illnesses in the UK, and bereavement support for their families.
Support for mental health issues, including an exploration of emotions felt with bereavement.
MND information, care and research for Scotland.
National Bereavement Service
Support on what to do when someone close to you dies.
Supports people through difficult times, including neurological conditions and bereavement.
Widowed and Young (WAY)
Support groups for people across the UK, who were aged under 50 when their partner died.
Bereavement support for children and young people
Child Bereavement UK
Bereavement support for children and young people.
24-hour support for children and young people in distress.
Childhood Bereavement Network
Guidance and lists of services for bereaved children.
The Good Grief Trust
Online grief support, with blogs, videos and playlists.
Gov.Wales (resources to help families with children)
A range of publications from the Welsh government to help parents and guardians, including bereavement advice.
Support for bereaved children and their families.
Cruse Bereavement Care’s website for bereaved young people.
Hope Support Services
Support for young people when a close family member is diagnosed with a life-threatening illness.
Support for bereaved children, young people and parents.
Support for young people’s mental wellbeing. Website includes ways to manage difficult emotions.
Funeral planning and advice
Institute of Civil Funerals
An organisation that can advise on civil funerals.
The National Society Of Allied And Independent Funeral Directors
Advice on funeral arrangements and location, of registered funeral directors.
Government and national support
The Bereavement Service (Northern Ireland)
When informed of a death, they tell all offices paying benefits to the person and can check entitlement to bereavement benefits.
NI Direct (Northern Ireland)
Government information about health and social care in Northern Ireland.
Tell Us Once
Enables someone to inform government departments that a person has died in order to stop benefits and related support, without having to make repeated contact. The service is available in England and Wales.
Page last updated: 14 June 2023
Next review: January 2025