Caring roles 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.
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. And the simple answer is that we’re allowed to feel exactly how we feel. There is no right or wrong. 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...
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. Or, if that’s not possible, talk to an organisation that can support us. We have a list below. And Mobilise is also here for you. Our Carer Support Team are here to chat seven days per week, including evenings.
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.
Several 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. Wel 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
Overwhelming negative emotions that feel like they’re swamping us
There are also some unexpected physical feelings associated with PTSD.
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, which 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.
We hope this blog has found you when you needed it most. Remember - we’re still here for you. You’re welcome to talk with our Carer Support team. They’re all carers themselves and they can offer a friendly ear and help you to organise your thoughts. We have appointments seven days a week including evenings.
And 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 firstname.lastname@example.org.
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:
Trusted friends and family.
Spiritual support. Local organisations of all faiths are likely to have resources and support. If we have a faith, reaching out to our community can help.
Untangle - practical guidance and emotional support
Cruse bereavement care - emotional support, including text based service if talking is difficult
Find your local carers' group - they may run bereavement support services
National Bereavement Partnership - advice and support for bereavement during the pandemic
The Good Grief Trust - run by the bereaved, for the bereaved
At a loss - signposting bereaved people to support