Caring for the carers
Your carer should try not to do everything themselves. It is important to look after their own health and get enough rest for their own sake as well as yours. Ask for help from friends and relatives as well as health professionals. Your carer’s energies are best spent on the things they really want to do with you or for themselves, and the things that nobody else can do for them. The Marie Curie Nurse is there for your carer as well as for you, and your carer is welcome to talk to the Marie Curie Nurse about their feelings and any difficulties they are experiencing.
Social services
The District Nurse can ask Social Services to make an assessment of your carer’s and your needs. Your carer’s needs are as important as yours and the services offered will depend on both of your needs. The services available can vary from area to area, but may include such services as meals on wheels or assistance with shopping.
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Carers’ organisations
A number of carers’ organisations provide a range of services for carers, including care in the home. Please see the Further information: carers’ organisations and information section for contact details.
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Support groups
Support groups exist for both patients and carers. These groups are usually made up of people who have had cancer or who are relatives of people with cancer. Someone may be able to make a home visit if you cannot leave the house. They also hold informal meetings where experiences and ideas can be shared. Many patients and carers find it a great help to meet with other people in a similar situation.
To find a support group for either patients or carers in your area:
- Ask your District Nurse or GP
- Phone Macmillan Cancer Support’s CancerLine (see the Further information: cancer charities section for contact details and further information)
- If you are in contact with a Marie Curie Hospice or another local hospice, ask if they have a social worker who could advise you on local sources of support for carers.
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Counselling
- Cancerbackup runs a helpline staffed by trained cancer nurses who can provide emotional support as well as practical advice.
- Macmillan Cancer Support’s CancerLine can provide emotional support.
- The British Association for Counselling and Psychotherapy can provide information on counsellors, including those with specialist training in cancer.
See the Further information: counselling section for contact details and further information on these organisations.
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Spiritual support
You may wish to contact a local minister or religious leader for spiritual support. They are usually happy to help, even if you were not previously actively involved with your local place of worship.
If you are in contact with a Marie Curie Hospice or other local hospice, the hospice chaplain or director of pastoral care can offer advice and recommend a local person whom you could contact.
Marie Curie Nurses are trained in supporting families of all faiths or none in respect of their spiritual needs.
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Family and friends
Family and friends may often want to be involved and to help, but may be embarrassed to ask or offer. It is very helpful to them if you make a specific request, in an open way so they feel free to refuse if they feel they cannot manage it. Or you could instead make a couple of suggestions so they can choose which they feel able to do.
Such requests could include:
- help with cooking a meal
- companionship
- shopping for the household
- visiting for a few hours to allow your carer to go out, perhaps for a coffee or a haircut. It can help you and the carer if they try to keep up at least some of their regular routine and do things that give them a break.
What can I do to help? by Deborah Hutton is a book written by a woman with cancer for the family and friends of people who have cancer. It lives advice on how to communicate sensitively and how to help in practical and supportive ways.
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Visitors
You can find it stimulating to have visitors, and company can boost your morale as well as your carer’s. However, sometimes you may be too tired for visitors or the time of the visit may not be convenient. In addition, some well-intended behaviour may be upsetting to you or your carer.
You or your carer may find it useful to mention some of the following to potential visitors if appropriate:
- Mealtimes may be best avoided.
- Certain times may not be convenient - for instance, if a professional carer will be with you.
- Visitors may sap your strength - it is often recommended that visits be limited to say half an hour, or to a couple of visitors at a time.
- While it is a natural human reaction to try to comfort you or your carer, some advice and anecdotes are not always helpful or supportive. Generally, comments on the lines of ‘everything will be alright’ or ‘I know someone who was given three months and lived for three years’ are best avoided.
- Information from newspapers or the internet about breakthroughs in treatment, or about treatments which are only available privately, is not usually helpful. For reported breakthroughs, the practical benefits for patients are generally several years away. Private or experimental treatments are usually very costly (this is particularly the case for treatment in the USA).
If a relative or friend seems reluctant to visit, do bear in mind that some people may feel uncomfortable about visiting but would be very happy to provide practical help.
However, it may be possible to alleviate their concerns about visiting. They may well be afraid of seeing you or worried that they will become upset in front of you, or concerned that they will say or do ‘the wrong thing’ or upset you. The more explanations and openness you and your carer can offer, the easier it will be for them, and perhaps the more satisfying for you.
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