Jill is a parent carer from Camden and was a member of the team at Camden Carers from 2008 until 2021. Here, Jill talks about how and why our caring roles may come to an end. And most importantly, how we can support ourselves through this process.
You can read Jill’s own caring story here.
How to cope when our caring role comes to an end
Our lives as carers can often feel like a continuous round of changes and adjustments, but it’s true to say that the biggest adjustment to be made is when our caring role comes to an end.
Whatever the circumstances and however prepared we think we are, the many changes that happen post-caring may feel overwhelming. The list of practical things to do sometimes overshadows our feelings about this change in our lives.
This piece explores when and why our caring role may end, and ways to help us prepare – or to adjust if our caring role has recently ended. As well as offering some options and choices around ending our caring role.
Death of the person we care for
It might not be something we like to think about often, but in many cases a caring role comes to an end due to the death of the person we care for. This may be unexpected and sudden, or there may be a period of decline and the person we care for may have the support of the palliative care team at the end of their life. Even though we will all experience death at some point, it is not an easy subject to talk about.
How people approach their own mortality is very personal. Some people like to be totally prepared and have everything in order for those who will be taking care of their affairs following their death; others may feel unable to think about death in such practical terms as it feels too emotional.
There are also many cultural differences in how the death of a loved one is handled. Sometimes cultural practices can offer a clear structure and order to how things are done, which can be helpful. Whatever our approach to the matter, there is always help to be found with the practicalities, as well as support to help us with our feelings.
If we do have time to prepare then it may be reassuring to have conversations with the person we care for about their wishes and feelings – so that we can carry out those wishes as far as possible.
Our blog ‘tricky death conversations for carers’ may offer a starting point to being prepared.
We will also have time to take care of other areas that may be impacted – finances, any housing issues, wills and funeral costs. Taking charge of some of the practical matters, can leave us freer to consider our own feelings, put in place support for ourselves, and even begin making plans for our future post-caring – with friends and other family members.
It is important to realise that no matter how prepared we might be for the death of a loved one, it will still be a shock when it happens. Grieving – not just for the loss of a loved-one, but also for the loss of your role as their carer – is a process that takes time; allowing time for ourselves to go through the different stages of grief is important in the adjustment process.
Many of us will have experienced anticipatory grief for months or years prior to this final moment too.
We can get help with all of this. Most carer support services will be able to offer practical and emotional support at this time. Our GP can be a valuable source of support as well, referring us to specialist services where appropriate.
We should not feel we are alone. Don’t underestimate the shared experience of those around you – talking with friends, family and even fellow carers can be of great comfort.
Choosing to end your caring role
It may be that the decision to end our caring role is more of a conscious choice. Let’s look at some possible scenarios.
When we have spent a significant period of our adult life caring e.g. for a disabled child, we may think about making the choice for them to move into supported living or residential care when they reach adulthood. This is the choice I made for my daughter. I was helped in this decision by my sister who reminded me that my other two children were free to become independent of me and that my youngest daughter could have the same freedom, which would be a natural progress into adulthood. I had the realisation that while I would no longer be her carer, I would always be her mum.
We may have a growing awareness of the need to put alternative arrangements in place before the time when you may no longer be able to care – for example if we’re taking care of a spouse and we’re both getting older. Thinking about this ahead of the time gives us the opportunity to make clear choices for us and those we care for. In this scenario, ending caring can be a gradual process, by allowing others to take on more of the caring in our place.
It may be that we decide we are no longer willing to be in the caring role for other personal reasons – a return to our career, for example. In this case we might need to explore alternatives to the care and support our cared-for is receiving. We are well within our rights to make this choice and are entitled to be supported with it.
Something may happen to us which affects our ability to care – e.g. a physical condition, injury or accident; or we feel worn down and realise that we can’t continue in the way we have been. When we have reached the limitations of our abilities to care for another, it can be hard to admit; however remember we can maintain some aspects of the role, if we wish to, and will always have the core relationship with our loved-one to enjoy.
Perhaps the person we care for can no longer safely be cared for at home and a decision is made to seek residential or nursing care. In this case we will still be considered their carer if we wish (overseeing the care and support they are receiving in their care home, managing their finances, etc) or we may decide to be their husband, wife, sister, etc and visit them in that capacity only.
Whatever the situation we find ourselves in, even when we feel comfortable in our choice about stopping our caring role, it is still an emotional decision.
It is essential to remember that we are not rejecting the person and that they will always be our daughter, son, wife, husband, etc – but that the additional care that they need will be provided by someone else.
Adjusting to our new normal
My daughter went to residential college after leaving school and a few weeks after she’d gone, I was at home one evening when it suddenly hit me that I could go out of the house without worrying about organising care for her. Our habitual ways of being are very ingrained and the routines we have as carers may have ruled our lives for many years – even in a short time these routines can take hold.
Why not put in place some new meaningful routines depending on our situation? How will we use our time, now we have perhaps more freedom and control?
It is not uncommon for carers to find that once our caring role has come to an end, that physical, mental and emotional exhaustion catches up with us and we may feel unwell for a while.
Make sure we allow ourselves to rest well, eat well, get some exercise and maybe have a health check – but also understand that this is very normal and will pass. We will feel a whole range of emotions – from relief and a sense of completion, to grief and loss – and at times just not really know how we are feeling. All our emotions are valid.
“Above all be kind to yourself.”
We are in a process of recovery, so make small steady steps as we adjust and feel our strength returning.
The best time for making plans for ourselves post-caring maybe while we are still in the caring role – so that we feel there is something to look forward to or to pick up again once we have more time.
It is good to plan our days, to lend structure to our time. Is there something we have always wanted to achieve which our caring role prevented us doing? Are there friends or family we haven’t visited in a while? What about volunteering or even returning to paid employment? Or perhaps some travel?
But always being aware of our feelings and taking the time we need.
Coping checklist - important things to remember
Life is a process of change and adjustment
Emotions can be up and down as we adjust to a different normal
Take the time we need to adjust - it can help to reflect on what we have learned and gained from being a carer
Be kind to ourselves: we have done a great job in our caring role
Get help – both practical and emotional
Make choices and plans that are right for us – at our own pace
Remember it is about making small, regular adjustments
Stay engaged with friends, family and community
If you would like any support right now or are experiencing grief, Cruse Bereavement offers day and evening emotional support, including text-based service if talking is difficult. You can call them on 0808 808 1677 free of charge.
They also have helpful resources around bereavement and grief. They can often get busy but do encourage you to try calling. Their opening hours are 9:30am to 5pm from Mondays to Thursday, 9:30am to 5pm on Fridays, and 10am to 2pm on weekends.
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About the author
As well as being a parent carer, Jill Pay is an Independent Trainer-Facilitator and Life Coach, and was the Breaks & Activities Service Manager at Camden Carers until 2021.