Carers’ Grief - and Bereavement
Author: Yvonne Tulloch
Date: 5th June, 2026
Overview: Caring often brings uncertainty, change and emotional strain. Find guidance on how to support yourself while supporting someone else.
Caring for someone you love can be one of the most meaningful things you ever do. It can also be one of the most demanding.
Whether you are supporting a partner, parent, child, sibling or friend, caring often brings a mixture of emotions. Alongside love and commitment, you may experience exhaustion, worry, sadness, frustration, guilt or loneliness. If the person you care for has a life-limiting illness, dementia or a condition that is gradually changing who they are, you may find yourself grieving long before a death occurs.
These feelings are frequently experienced and understandable. Caring and grief are often closely connected.
Grief can begin before a death
Many carers experience what is sometimes called anticipatory grief. This is grief that occurs when you know a significant loss is coming or when you are already experiencing losses as a person's health, abilities, independence or personality change.
You may be grieving:
The relationship you once had
Shared plans for the future
Changes in family life
Loss of independence for the person you care for
Your own freedom, time and opportunities
The gradual changes brought by illness or disability
You may find yourself moving between hope and sadness, determination and exhaustion, acceptance and anger. This can be emotionally confusing, but it is a normal response to an abnormal situation.
One bereaved carer reflected:
“Trying to balance the 'pre-emptive grief' of knowing someone you love and care for is dying, with still caring for them whilst they are alive is nigh on impossible. There is no right way to do it, no road map to follow, just as there isn't one for grieving after the person's death. It's a natural part of coming to terms with the end of a loved one's life, and everyone will handle that differently.”
The particular grief of dementia
Supporting someone with dementia can bring a unique experience of grief.
Many carers describe feeling as though they are losing the person they love in stages. While the person is still physically present, aspects of their memory, personality, communication or recognition may change over time.
You may grieve:
Shared memories that can no longer be recalled together
Conversations and companionship you once enjoyed
Changes in roles and relationships
The loss of future plans
The gradual reduction in independence
This can create what some people call an "ongoing grief" – a series of losses experienced over months or years.
Others may not always recognise this grief because the person is still alive. This can leave carers feeling isolated or misunderstood.
If you are supporting someone with dementia, it can help to acknowledge your losses, seek support early and find opportunities to connect with others who understand the challenges of caring. Find out more in our guide on Supporting Someone Living With Dementia and Grieving Along the Way.
When caring ends
When the person you have cared for dies, the loss can affect every part of your life.
Alongside grief for the person, you may experience:
A loss of purpose or identity
Relief that their suffering has ended
Guilt about feeling relief
Physical and emotional exhaustion
Loneliness and changes to your daily routine
Uncertainty about what comes next
Many former carers are surprised by how complicated their emotions feel. It is possible to feel grief, love, relief, sadness, gratitude and anger at the same time.
There is no right way to grieve except what feels right for you.
One bereaved carer reflected:
“I wish someone had explained the emotional realities I would face and not just the legal ones. Completing the Will and Power of Attorney was helpful, but none of that prepares you for the emotional side of grief.”
While practical preparations can be important, they do not remove the emotional impact of loss. Many carers find that understanding grief and accessing emotional support can be just as valuable as planning for the practical aspects of the future.
Looking after yourself
When you spend so much time caring for someone else, your own needs can easily move to the bottom of the list.
Try to remember that caring for yourself is not selfish. It helps sustain you through difficult times.
Talk to someone
Share how you are feeling with a trusted friend, family member, faith leader, colleague or support organisation.
You do not have to carry everything alone.
Accept practical help
People often want to help but may not know what to do. Consider whether someone could help with shopping, meals, transport, paperwork or household tasks.
Make space for rest
Even small moments of rest can help. A walk, a cup of tea in peace, prayer, reading, music or time in nature can provide valuable breathing space.
Be gentle with yourself
Many carers set impossibly high standards for themselves.
You are human. You will have good days and difficult days. Showing yourself the same compassion you offer others can make a difference.
Stay connected
Grief and caring can both feel isolating. Maintaining connections with supportive people can help you feel less alone.
One bereaved carer shared:
“Staying connected with my [community] group became incredibly important after the bereavement. I didn’t always need to talk about what happened, people already knew, but maintaining those connections helped me keep a routine at a time when I felt very alone.”
Supportive connections can come from many places and often it is the steady presence of others that can help people feel supported.
Supporting children and young people
When illness, caring responsibilities or bereavement affect a family, children and young people are affected too.
They may be worried about the person who is ill, concerned about changes at home or struggling to understand what is happening.
Children often cope better when:
They receive honest, age-appropriate information
Their questions are welcomed
They are included rather than protected from every conversation
Their feelings are listened to and validated
Trusted adults work together to support them
Schools, colleges and other trusted organisations can play an important role in helping bereaved children and young people feel understood and supported.
Finding support
Many carers are so focused on supporting someone else that they do not seek support for themselves.
Yet reaching out for help can make a significant difference.
Support may come through:
Local carer support centres Carers Trust
Specialist carers' organisations and support Carers UK
Attending The Bereavement Journey® support programme online which can sometimes feel easier than attending an in-person group
Faith communities
Counselling or listening services
Some people benefit from practical support. Others need emotional support, information or simply the reassurance that they are not alone.
There is no one-size-fits-all approach.
Where to start
If you are looking for support, this AtaLoss.org website can help you explore bereavement information and find support services that may be right for you.
AtaLoss also offers:
Information about grief and bereavement
Support and guidance for those caring for someone who is seriously ill
Resources for supporting bereaved children and young people
Training webinars for schools, organisations and communities
Emergency support for organisations responding to the death of a child
The Tough Stuff journal, designed to help young people work through grief
Signposting to national and local sources of support across the UK
A message of hope
Caring is an act of love, but it can come at a significant emotional cost.
If you are grieving while caring, or grieving after caring has ended, know that your feelings matter. The losses you are experiencing are real, and support is available.
Over time, many people find ways to carry both their grief and their memories, while gradually rebuilding a life that honours the person they loved and cared for.
You do not have to walk that journey alone.
If you or someone you know is grieving and looking for support, Ataloss.org directs to bereavement support services across the UK, as well as a growing library of helpful resources for people who are grieving, whoever is bereaved and whoever has died.
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