Keypoints

Introduction

Carers often face what they see as a double burden. They are worried about the practical aspects of caring for an unwell spouse, partner, relation or friend, and about whether they will have the physical and emotional resources to cope. At the same time, they may well still be coming to terms themselves with the diagnosis or relapse of non-Hodgkin's lymphoma in their loved one.

It is important for carers to remember that they are not alone and that there are many services available that can help them both in their role of caring and in remaining fit and healthy themselves.

The lymphoma team, the patient's family doctor or the carer's family doctor will be able to put carers in touch with organisations that can offer emotional and practical help to people in a caring role

Carers are not alone

Talking to the doctor

It is often very important for the carer to talk to the patient's doctor and the lymphoma team. The carer needs to be informed, just as much as the patient does, about the non-Hodgkin's lymphoma, about the treatment and its side effects, and about the likely outcomes.

Some doctors may sometimes seem unwilling to divulge information to carers. They may see their relationship as being with the patient and therefore regard many matters as confidential and not to be shared with a third party without the patient's permission.

In such cases, it may be helpful for the patient to make it clear, if possible, that he or she wishes the carer to be involved in discussions and decisions about the patient's condition, treatment and outlook.

It is often helpful, if appropriate, for the carer to attend appointments with the patient. The patient's doctor and other members of the lymphoma team will be able to suggest sources of support for carers as well as for patients.

Sources of support

Many carers feel isolated and alone. There are a number of sources of support. The lymphoma team, the patient's family doctor or the carer's family doctor will be able to put carers in touch with organisations that can offer emotional and practical help to people in a caring role (for more information, see Finding support).

Work and caring

It can be difficult for carers who have to work outside the home, knowing that the patient that they are caring for with non-Hodgkin's lymphoma may have to be left alone for hours at a time. There are groups that offer support and also practical help for carers in this situation.

It is often a good idea for carers to inform their employer of their situation at an early stage, rather than waiting until a problem arises. Many carers are pleasantly surprised at how understanding their employer can be. Depending on the situation, it may be worth exploring flexible working shifts or working from home sometimes.

Some patients with non-Hodgkin's lymphoma are entitled to various benefits, depending on their circumstances. Such benefits could reduce the impact of a loss of income on the part of the carer. This is a complicated and ever-changing subject, and good advice is essential. Although the clinical nurse specialist, the haematologist or family doctor probably will not be able to help directly, they will be able to advise on where to go for information. Advocacy groups can also provide a source of information on the rights of patients.

Patients will understand that their friends and relatives may not always be able to be close at hand

Caring from afar

People who find themselves in a caring role but who live some distance from the person with non-Hodgkin's lymphoma face a difficult dilemma. They often feel helpless and sometimes they believe that they are letting their loved one down by not being with them as much as they would like.

However, patients understand that their friends and relatives may not always be able to give all the support they would like. Even just a card or message to remind the patient that they are being thought about is greatly appreciated.

Importance of carer self-care

Many carers neglect to look after themselves properly. Sometimes, this is because they become so busy that they simply either forget or find that they have no time to care for themselves as they ought to. Often, it is because carers feel guilty, as if they are letting down the person they are caring for by also spending time looking after themselves.

But the best care cannot be given by carers who are themselves physically or emotionally drained and exhausted. It is vitally important that carers take time to look after themselves and to seek support when they need it. A healthy diet, adequate exercise and opportunities to fulfil personal needs and obligations and to pursue interests outside the carer role are all important in achieving adequate self-care. Only in this way can a carer give the best possible care to the person with non-Hodgkin's lymphoma.