A guide for experiencing grief
as a carer
In some circumstances, it can be hard to recognise grief, and then accept and process it; especially when the person we care for is still with us. Or, if we are grieving things other than death, such as our relationships, life before caring, or the future we thought we would have.
We will often experience waves of grief throughout our caring journeys – not just at the end of someone’s life. Grief is complex, not linear - and that’s okay!
While our experiences with grief will be unique to us, this page explains some common key moments of grief, and leads us to information and support, specific to our situation.
What does grief look like?
Grief is personal and unique to each of us. It doesn’t follow a set pattern or timeline. That being said, there are some common emotional signs to look out for, such as feeling chronic sorrow, feeling angry a lot of the time, or having trouble sleeping.
For those of us who come from cultures or families where showing emotion is more frowned upon, it can be particularly hard to identify and communicate how we feel. Not to mention we can be so busy ‘doing’ we can have little time left for ‘feeling’.
"There is often not really “space” for feelings around grief, as we have so much we have to respond to. Not to mention feeling we need to put other people's needs first."
But knowing the physical and mental symptoms of grief can help us to recognise and then process the emotions around it.
Why do I feel grief?
Grief often stems from loss. This might be the loss, or impending loss, of the person we care for. But, it could also be the loss of parts of our life we enjoyed before caring, or of our previous relationship with the person we care for.
From the loss of our own identity and life-goals, to the loss of the relationship with the person we care for as we knew it, we explore seven examples of the types of grief we may experience in our guide to a carer’s grief.
If we are caring for our partner, that can have a huge impact on the relationship we had with them. This can feel hard, as our significant other is usually the person our life goals align with; our partner in life. We share tips on dealing with the sense of loss that can come with caring for a partner.
If we’re caring for our parents, the shift in caring roles might be hard to process. It can be difficult seeing them become less able to do things they were once doing independently.
“We can run from or ignore our feelings by keeping busy - but eventually they hit you like
a ton of bricks”
“We can be so busy with all the practical stuff, that the emotions don’t pour out until
after the funeral”
How do I cope with feelings of grief?
When we talk about grief, we often think solely of losing a loved one. And if this is a reality for us right now this guide may help to support us through a difficult time.
Labelling grief for what it is is a great place to start, and knowing 15 signs I might be grieving can help us with this.
Whatever the cause of our grief, our guide to making friends with our feelings may help us to recognise and process the emotions we experience - especially if we find ourselves suppressing it.
Be it grief, or the other intense emotions and demands on our physical and mental health, this can have a dramatic impact on our bodies as well as our minds. Read how to spot the warning signs, and how to support our recovery, and the 14 warning signs of burnout.
When things do feel heavy, we have three simple suggestions for lifting our mood from our community of carers. It can also be helpful to navigate these complex feelings and find effective coping strategies by talking to a professional. If we’re at a point where we’re considering therapy, our guide to talking therapy is a good starting point.
One of the biggest ways to deal with grief is through connection. If you feel ready, you’re very welcome to join our private online Mobilise Hub for unpaid carers.
It's a space where carers are welcome to ask all sorts of questions, and we help each other out with our own experiences.
"I was on autopilot doing and saying all the right things. I was keeping busy - too scared to stop in case it all caught up with me. My body felt so heavy, my shoulders and jaw were tight and I found myself saying "we're fine" a lot, through a wide, fixed smile. I now know this was my body storing unprocessed grief. It was utterly exhausting."
When the person we care for has a terminal diagnosis
There are many situations where we may be caring for someone who knows they will never recover. This may mean they still have years with us, or months, but either way anticipatory grief can be incredibly tough to deal with.
Reading someone else’s experiences can help us feel less alone in our feelings. Rosie shares her story of coping once she heard her mum only had a few weeks left.
“She admitted that she found how we’d all been hiding our emotions really difficult - that whilst we tried to pretend everything was fine, it made her fear that no one cared she was dying.”
Once we know someone’s time is coming to an end, the conversations we need to have can feel incredibly difficult, for us and for them.
With the help of carers in our community, we’ve created a guide including five tricky conversations we might like to have.
Coping with the legal sides of death
Dealing with the legal stuff that comes with knowing someone's time is coming to an end can feel overwhelming. It can be helpful to be aware that the process in itself can surface feelings of grief and loss.
Our carers’ guides to Wills and Trusts, and Lasting Power of Attorney walks us through the steps involved.
Reading other carers' experiences can help. Mike shares his story on the legal blindspots he faced whilst caring for his late husband Tom, who had dementia.
While other carers from our community have shared their experiences with grieving.
“Say what you need to say to your loved one. And give them the time to say
what they have to say.”
When our caring role comes to an end
Caring roles can be all consuming. We may have given up jobs, moved house, lost friends, and forgotten the things we used to enjoy doing. When the person we care for dies, along with the grief of losing them, a part of our life as we’ve come to know it stops, which can be incredibly difficult to process.
We have pulled together a range of suggestions, from carers just like us, for support when the person we care for dies. 10 practical steps to take when someones dies. And on ways to cope and adjust to the new normal when our caring role comes to an end.
The Good Grief Trust has a helpful, practical guide on what to do when someone dies.
If things are very challenging right now, please remember that how we feel now, will not be how we feel forever, and that urgent support is available.
If we didn’t always like, or held a lot of anger towards, the person we cared for this can bring up all kinds of complex emotions when they pass away. Even if the relationship started well, during our time caring it can become more difficult and unhealthy.
However we are feeling, our guide to making friends with our feelings is a helpful starting point for accepting and unpicking complex emotions.
Other resources
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National Bereavement Alliance: A guide with the bereavement support that is available in the UK, from self-help resources and helplines to peer support groups and grief counselling.
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Untangle: A range of support to help us navigate life after loss.
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Cruse Bereavement Care: Cruse provides support for individuals dealing with bereavement. They offer helplines, local support groups, and information on coping strategies.
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Samaritans: While Samaritans primarily offer emotional support for anyone in distress, they also provide guidance for coping with feelings of grief. Their volunteers offer a non-judgmental listening ear via phone, email, or in-person (when available).
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Mind: Mind, the mental health charity, provides information and support for various mental health issues, including coping with grief. They offer resources, guides, and contacts for local services.
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Marie Curie: Help and support for those in end-of-life care
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WAY Widowed and Young: This is a charity specifically for those who have lost a partner at a young age.
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Hospice UK: Hospice UK offers guidance on coping with grief, especially related to end-of-life care and bereavement.
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Dying Matters: Resources to help deal with different aspects of death, dying and bereavement
There can also be solace in sharing feelings with others going through something similar to us. If you have any tips for coping with grief, or just want to share thoughts and feelings with others who are in similar shoes, our Mobilise Hub is a free community welcome to all unpaid carers in the UK.