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The social and emotional impact of care

Please be mindful that this the information below includes information that you may find difficult or distressing to think about. Looking after yourself and your emotional wellbeing is vital. Please see the ‘looking after yourself’ section below for tips and support. This information was co-produced with LPFT's Carers Council.

Your experience of beginning to recognise yourself as a carer can be incredibly complex, confusing and difficult to navigate - it has been described as much like a grieving process. It might be that you don’t identify with the idea of grief in care giving at all, but it is likely that at some point you have struggled with feeling that you have lost your own identity, are missing out on 'normal life' or have had to make adjustments in order to fulfill your role as a carer for someone you love.

Grief is about morning loss and for people who provide care for someone, this is often about more than just when someone dies. In just the same way that it can take up to two years for someone to identify themselves as a carer, the recognition of loss can also be a long process, especially because other people around you might not understand or accept this given the person you are caring for is still alive.

Loss of the present and looking back

In the early stages of caring for someone, especially if you have taken on the role very suddenly, but even if you have taken this role on over time, the losses can be more obvious. It is likely that things will change for you in measurable ways and this can be very hard to cope with. This might look like:

  • Being unable to work or work the same job/hours.
  • Having less time to engage in your ownhobbies and interests.
  • You find it more difficult to maintain social relationships and friendships. Your networks  might become smaller over time or very quickly.
  • You are unable to travel or go on holiday as much as you did before
  • Losing your sense of self – all you time is suddenly taken up with meeting the needs of the person you care for in order to make sure that they are comfortable, that their needs are met and that they have some quality of life.

Although these are likely to be some of the first things you notice, circumstances can change and develop over time and you might notice that there are periods throughout your caring role when you feel acutely some of the sacrifices you are making. It might also be that in the early days you have more support, but as people get back to their own normality you find that aspects of your life you thought you would be able to maintain are no longer sustainable.

It’s also likely that the relationship you have with the person will have changed significantly. In people with mental health or cognitive difficulties such as dementia, the person might talk or respond to you in a way that you don’t recognise. Grieving the loss of a person still living is often known as ‘ambiguous grief’ – more information on this can be found in our Ambiguous Grief leaflet.

Aspirations unfulfilled and looking forward

Overtime you might start to notice that things you thought you would achieve or aspirations you had are not happening in the way you had thought. This might be milestones for you or experiences that you would share with the person you care for. This can be very difficult if those around you are celebrating things you never will. This might be:

  • Seeing your child get married/go to university/move into their own home
  • Progressing through your career or getting promotions
  • Retirement plans
  • The freedom to travel or expand your experiences in other ways
  • The ability to go out to celebrate successes of those around you - attending parties or events

Loss of the caring role

If and when the time comes that the person you care for dies, this can be an incredibly complex, difficult and lengthy grieving process. Not only are you mourning the person who has died, but the loss of your role as a carer. It is likely that you will experience a range of emotions, which might sometimes feel conflicting, including sadness, relief, guilt, anger, bitterness or resentment.

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.

Looking after yourself

It’s important to look after yourself. If you are not well, either physically or emotionally, then it makes it very difficult for you to care for someone else. If you are struggling it is important to seek help.

Below are a few tips that you may find useful to support your own wellbeing.

  • Take time for yourself and do something that you like, even if it is for 30 minutes or an hour a day (e.g. read a book or have a relaxing bath).
  • Find someone to talk to. Having a friend or peer to offload to can be really beneficial to your own mental health. You could also join LPFT’s carers WhatsApp group, which consists of LPFT carers who support each other and will understand what you are going through. Email donna.bradford@nhs.net to join.
  • Join LPFT’s carers education and support group and learn about your relative’s condition, how services are run, and meet others in similar situations to you. Email donna.bradford@nhs.net to join.
  • Email the LPFT carers email address and let us know that you need some support - lpft.carers@nhs.net
  • Ask about family therapy available through the Trust.
  • Take courses through Lincolnshire Recovery College. There are lots of courses suitable for carers.
  • Remember our Mental Health Helpline (0800 001 4331) or the Samaritans are also available if you need support.

A printable version of this information can be found here.