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Support when the person we care for dies

Caring for someone can be all-consuming. We may have given up jobs, moved house, lost friends and freedom. When the person we care for dies, a huge hole can be created and we can feel this very deeply.

The impact on each of us will vary, depending on our relationship and perhaps how much of our life we have given over to caring. We have one thing in common though. We all need support.

Illustration of a woman sitting alone

Carers in our community, who have lost the person they cared for, have kindly shared some of their experiences. With lots of empathy, practical advice and signposting for support, we hope this blog finds you at the right time.

When the person we care for dies

There is no road map for this but our community of carers have shared the following advice, from lived experience:

  • Take a breath

  • Take a moment for ourselves every day

  • Give ourselves time to grieve

  • Be kind to ourselves. For example, we might not be our usual organised selves. We might forget some things. It’s OK. Berating ourselves doesn’t make us feel better, but some self-kindness will.

  • Eat all the cake that’s offered!

  • Don't worry about what to do, the funeral directors will take us through everything

  • Take one day at a time

  • Be careful of being too busy

“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”

We’ve broken the blog into two parts - the emotional stuff and the practical stuff. Bookmark the page and read when you’re ready.

Part 1: The Emotional Stuff - when the person we care for dies

How are we supposed to feel when the person we care for dies?

Now this is a big question. The simple answer is that we’re allowed to feel exactly how we feel. There is no such thing as grieving the right way. And there is also no timeframe for the wave of different emotions we may experience at different times.

Factors that can influence how we feel may include:

  • The relationship we had with the person we cared for

  • How consuming our caring role was

  • If the death was sudden, or we had been ‘losing’ the person for months or even years. In which case we may have already experienced anticipatory grief

  • Plus, what else is going on in our lives, from how supported we feel, to the level of our other responsibilities (such as children or work)

Carers in our community, who have lost the person they care for shared some of the feelings they went through:

“I had some feelings of relief that I could breathe again, and then a huge wave of guilt and the sense of being judged by others.”

“I felt stuck. My life and my limited friends were built around my caring role.”

“I found myself really busy and taking on more and more ‘stuff’. Looking back I think I was running away from the painful emotions.”

“I have no purpose anymore. I’ve lost my identity.”

“I miss them so much and no one understands my pain. I get the bereavement cycle, but I was a carer - So it’s different for me.”

“I have been diagnosed with PTSD after it all happened so quickly”

What if I didn’t really like the person I cared for?

It’s important to acknowledge that not all of us have had a good relationship with the person we care for. Relationships can be complicated, and when we throw in the intensity of what a caring role can bring, then feelings can be amplified.

And how this plays out after their death can be challenging for us. It can be helpful to know we're not on our own if we had some negative feelings towards the person we cared for.

How do we deal with our feelings when the person we care for dies?

There is no right and wrong, but here are some tips on managing the rollercoaster of emotions, following the death of the person we care for.

1. Notice our feelings

It’s important to take the time to acknowledge and feel our feelings. And all emotions are valid. The saying “What we resist persists” is very true of our feelings. We can’t move on until we’ve dealt with them. Yes, it may be very painful, and yes it may take a long time. But we don’t have to do it alone...

2. Talk

One of the most effective ways for us to start managing and processing our feelings is to simply talk. Talk to a trusted friend or relative. And Mobilise is also here for you. Feel free to join our community of unpaid carers who 'just get it' - a place where we have daily conversations and pass on our wisdom.

If we’re unable to talk then some carers have recommended text-based support. An opportunity to engage over email or on a messenger app. For example, Cruse Bereavement Care has an online chat function for emotional support.

3. Shared Experience

Reaching out to others who have been through a similar experience, can bring comfort, empathy and advice. There are bereavement groups available (see our resources list below). Plus the support of our community remains available to you, even after your caring role ends.

Members of our community have received a huge amount of support from within our community - both during end of life care, and through bereavement.

4. Write it out

Journaling can be an excellent way to make sense of our feelings. And it is particularly good if we feel uncomfortable talking and sharing our feelings with others. It can remain private to us. Read our guide to getting started with journaling.

5. Get creative

For some of us, getting ‘arty’ can be an effective way of labelling and working through our feelings. Using colours to represent our feelings right now, and perhaps our feelings of hope. There are no rules, and we don’t need to be an artist.

Lots of carers in our community are firm fans of using creativity to make sense of emotions. Read how scrapbooking can support mental health.

And how Bridget, a carer in our community, uses art to support her mental health (leave your inner critic at the door!).

What are the signs of Post Traumatic Stress Disorder (PTSD) after caring?

While most symptoms of trauma will fade over a few weeks, for some people it can be longer or there may be a delay to the feelings setting in. Where the feelings persist, there may be a diagnosis of Post Traumatic Stress Disorder (PTSD).

Some carers in our community have reported being diagnosed with PTSD after their caring role ended. It’s helpful to be aware of the signs, so we’re able to seek immediate help if needed.

These are just some of the signs to look out for, and a full list is available on the ptsduk website.

  • Flashbacks - where we relive the traumatic event like it’s happening right now. We'll feel this physically too, such as with a racing heart.

  • Keeping ourselves busy all the time

  • Using alcohol or drugs to stop the thinking and feeling

  • Reckless behaviour

  • Difficulty sleeping

  • Overwhelming negative emotions that feel like they’re swamping us

If we are struggling in any way, it’s very important that we reach out for support. To our GP, a trusted friend, our Carers’ Centre, or Charity or organisation that supports bereavement. Please see our list of support organisations below.

Part 2: The Practical Stuff - when the person we care for dies

When you’re ready, the below practical considerations can help.

What do I do, when the person I care for dies?

AgeUK has a helpful guide, that talks us through the practical steps to take when someone dies. And carers tell us that funeral homes are really helpful at talking us through the next steps.

What happens to Carers’ Allowance when the person I care for dies?

Carers’ Allowance can be paid for up to eight weeks, after the person we care for has died. There is a ‘tell us once’ service we can use to report the death of the person we cared for. Some carers have mentioned that their Carers’ Allowance was stopped prematurely and that they had to get in touch with the DWP to reinstate it for the remaining time. So it’s wise to keep an eye on our bank statements.

Practical considerations when the person we care for has passed away

Carers have shared some of the practical things we may need to consider.

  • Any council tax discounts will be reassessed

  • Motability cars need to be returned within two weeks

  • Blue badges will need to be cancelled

  • We need to arrange for the safe disposal of medicines, e.g. to our local pharmacy

  • Mobility aids and other equipment needs to be returned (and can take some chasing!)

  • Unopened surplus medical supplies (such as continence pads) could be put on a freecycle site

  • Some of us may be eligible for Bereavement Support Payments

  • If we lived in the home of the person we cared for, there may be implications for where we can live going forward. This will depend on home ownership, trusts and what is in any will. It may be helpful to talk to the Citizen's Advice bureau if unsure.

If at any point you feel able to share your experience and help to grow the advice on this page, please do get in touch at

With thanks to all the carers who shared their experiences to create this blog.


Support can come in many forms. Here are some suggestions and links to other organisations which can support us:

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Jan 22

thanks for this podcast,I have found it helpful,if only this had been made available to me months ago from the various organisations I had been in touch with.The guilt,emptiness.loneliness,sorrow that I feel has not lessened and in many ways become worse.On Saturday a demand for money/ debit arrived on Saturday.My dear wife died in February 2023 and I have never received any such demand before.I have just phoned, the debt will be cancelled but I was not told what it is for due to "regulations".I went to a really wonderful concert last night and sobbed during several sections as I knew my dear wife would have loved them and will never be able to hear such music again,Thank you f…


Nov 13, 2023

I cared for my mum for many years, in the last year giving up my own home and nursing career, to care for her full time due to ever diminishing capacity due to her diagnosis of vascular dementia. After a brief two week stay in hospital in the beginning of Dec 2022, I brought her home, where she passed away at home on Dec 27th 2022. surrounded by family. I couldn't cry immediately, I felt numb, the funeral was the only time I have cried. I have not returned to work and as an only child have inherited her property, where I live now. I have had to make some changes cosmetically and feel guilty for this, some of mum'…

Suzanne Bourne
Suzanne Bourne
Nov 28, 2023
Replying to

Thank you so much for sharing your experience. Lovely to hear how you have found some ways of moving forward.


Sheila White
Sheila White
Nov 13, 2023

After losing my daughter, I started to paint her portrait and I think it helped. I can't seem to finish it though as it will be like saying goodbye to her again. I sit and paint in the very spot where she died and it helps me feel close to her. I also had a very realistic dream where I was still holding her and my mother came to tell me that my daughter was missing me so she brought her. I was still cuddling her when I woke up. It's been a year now but I still cry every day

Suzanne Bourne
Suzanne Bourne
Nov 28, 2023
Replying to

Thank you so much for sharing this with us Sheila. Painting sounds like a helpful way of gently and gradually saying good bye whilst also celebrating who she was.


Aug 11, 2022

This is so Informative. Thank you for Sharing.

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