top of page

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, as well as losing someone, 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 with the person we looked after 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 the Mobilise 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 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

  • Find 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. We don’t have to try and take in everything now, we can always bookmark the page to come back to  when we feel 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 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 a death.


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, a relative or a professional therapist. And Mobilise is also here. Feel free to join the community of unpaid carers who 'just get it'.


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 the community have received a huge amount of support from the other carers there - 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. This guide can help get us started with journaling.


5. Get creative

For some of us, getting ‘arty’ can be an effective way of labelling and working through our feelings. We could try using colours to represent our feelings. 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.



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.

  • Feeling the need to keep ourselves busy all the time

  • Using alcohol or drugs to stop 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 guiding 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 in the community 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 

  • Blue badges will need to be cancelled

  • We need to arrange for the safe disposal of medicines.ur local pharmacy can take them

  • Mobility aids and other equipment needs to be returned 

  • 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 we are unsure.


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



Support

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



You may also like

A guide to experiencing grief as a carer

Seven types of a carer's grief


 
 
bottom of page