The final piece of advice we have about caring for someone with cancer is about life after caring.
This advice has
been written by other carers of people with cancer and has been taken from our
booklet Hello, and how are you? A guide for carers, by carers.
You can download the full booklet and find out more about how Macmillan can help carers. You can also join our carers group to connect with other carers and to share support and advice. This advice comes from carers' own experiences.
Life after cancer
‘You think “Will life ever be the same again?”. The answer is no. But you do begin to appreciate every day and live life with a new outlook. Whatever the outcome, life can become more fulfilling and richer.’
Sue
The topics covered are:
For many of us, it took some time to adjust to the end of our caring role, whether that was because the patient moved into residential or nursing care, was now able to care for themselves or that they had died.
You can have a lot of time to fill and you can feel quite adrift, without purpose or direction.
If you don’t return to work, this is a good time to learn something new, volunteer or campaign to improve information and support for carers.
Some of us also found that when we stopped being a carer, exhaustion – both physical and emotional – caught up with us and that we were susceptible to falling ill.
Having spent a lot of time caring for someone else and putting their needs first, it’s important that you take care of yourself and, where possible, let other people look after you.
Initially, you will have to deal with some practical matters fairly quickly, such as benefits, but you do not have to rush into decisions about what you will do next straight away.
Take your time, and remember that there are a lot of people and organisations out there that can support you.
Practicalities
Writing down what we needed to do in the short and long term was handy for a lot of us.
If you are claiming Carer’s Allowance, it’s important that you let the Carer’s Allowance Unit know you have stopped being a carer. There may also be a change in what other benefits you are entitled to. It’s best to find out as quickly as possible what you need to do regarding benefits as this will help to avoid problems later on. Call Macmillan on 0808 808 00 00 for advice. Carers UK’s website also has useful information.
Try to accept help that is offered to you. After putting the needs of someone else first for so long, you shouldn’t feel guilty about accepting support.
After your caring role ends, and life is not as hectic, it’s not unusual to be affected physically and mentally from your experience. This may occur weeks, months, or even years or more after you stop being a carer. Make sure you keep a close eye on any changes to your health.
Many of us found it difficult to pick up the pieces and start again with regards to work, friendships and outside interests once we stopped being a carer.
Don’t force yourself to go back to the life you had before you were a carer. You may have changed a lot from your experience.
Emotions
It’s not unusual to feel guilty about returning to a ‘normal’ life free of caring responsibilities.
It can feel strange when your caring role ends. You may want to take time out or you might go into automatic pilot and carry on with life as if nothing has changed. Do whatever feels right for you.
People are likely to rally around you for the first few days or weeks if the person you were caring for has died. Sometimes it may take months or years before you are fully hit by your loss.
Remember that there are still many support services out there to help you. See ‘Your future’ section in Death, dying and bereavement.
Many of us are still benefitting emotionally from attending support groups even though our caring role has ended.
If you are finding it difficult to express your emotions, consider keeping a journal.
Despite the fact that you have stopped caring for the patient, you may find it hard to disassociate yourself from that role.
You may constantly feel an overwhelming need to help others, or you may want to keep in contact with the hospital or hospice that provided support to the patient. This is quite normal and something you can use to positive effect. See the ‘New challenges’ section below.
You may find that you constantly worry about the patient getting cancer again. This may lead to you becoming over-protective. Try to live life without this worry hanging over you.
New challenges
Returning to work may be a necessity and something you wish to do to bring some direction into your life. We have a lot more information in the work and cancer section.
You may feel that you want to refresh skills that you have not used for a while, or learn something new. Your local library or adult education centres can find suitable courses in your area.
The following websites can also provide you with useful information: learndirect.co.uk and the ‘Adult learning’ section on direct.gov.uk
Many of us have gone on to use our experiences to help provide better support and information for carers. This handbook is an example of that work. You can do similar work by joining a local user group, working with a charity or speaking directly to your local council about carer services in your area.
Volunteering is another great way to make a difference, meet new people and develop new skills. You could help out at the hospital where the patient received treatment or your local carers’ centre, or volunteer for a charity.
It’s good to be aware that organisations and charities may have restrictions on who they will accept as volunteers, especially if a potential volunteer has recently been bereaved. Speak to the organisation or charity about any restrictions they may have.
Other ideas
Macmillan Cancer Voices is a UK-wide network that uses peoples’ experiences of cancer to improve cancer care for patients and carers. You can find out more about the Cancer Voices network by calling 020 7091 2006 or emailing cancervoices@macmillan.org.uk
If you are interested in volunteering for Macmillan, contact your area’s volunteering adviser – details at or for general enquiries, call 020 7840 4961.
When caring comes to an end, a guide produced by Carers UK and Help the Hospices, features helpful information on ‘When the person you care for moves into residential or nursing care’, ‘When the person you care for has died’ and ‘Life after caring’. You can get hold of When caring comes to an end for free by calling 0845 241 0963 or emailing publications@carersuk.org. Or you can download it from the Carers UK website.
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I hope that you have found these posts helpful if you are caring for someone with cancer.
Macmillan is here here to support you - find out more here.
Thank you to everyone who has commented on these posts.
Take care and best wishes,
Libby
