Husbands, wives and partners may play an important role in caring for people with a terminal illness, and their needs must be considered too. Many of the people we talked to were keen to point out that carers have feelings and worries, but often get forgotten. A woman with breast cancer suggested that carers have to struggle alone without any support.
Discusses the needs of carers and suggests that support is not available.
Healthtalk has a separate website on ‘Caring for someone with a terminal illness’ that you may find useful.
When a person is first diagnosed with a terminal illness the partner is also likely to feel a sense of shock. Plans for the future must suddenly be re-thought, social activities may no longer be possible, holidays may have to be cancelled, and the whole approach to life may need to change. Family relationships may radically change or reverse if a parent who has always provided care starts needing to be looked after. This can profoundly affect relationships.
Explains why caring for someone with terminal illness can be difficult.
Carers may feel a sense of love and achievement, but they may also experience many negative feelings and emotions, such as helplessness, resentment, anger, guilt, anxiety, sadness, frustration, loneliness, fear and worry about their own mortality.
It can be physically exhausting to care for someone else, and sometimes the health of the carer suffers too. A couple who regularly went to the gym together both stopped when the wife became ill. As a result the husband put on weight, and was later found to have high blood pressure.
Her husband’s health suffered because of her own illness.
Caring for someone who is seriously ill can be very time consuming and may leave the carer feeling isolated. One woman who cared for her husband stressed the importance of having one’s own time. She tried to see her friends while he was asleep in the afternoons.
Some carers give up work to care for a husband, wife or partner, sometimes with serious financial consequences. Lack of work may also affect self-esteem and sense of dignity.
People sometimes forget that carers have a very hard task.
Support from social services may be needed (see ‘Care at home: social services’). One man we talked to had multiple sclerosis. His wife cared for him at home, but she was over 80 years old and needed help with domestic work. He said that carers should insist that they are entitled to the help they need. A social worker can assess a carer’s needs.
Says carers must insist that they are entitled to help from social services.
Carers may be able to get support from wider family and friends. The GP and local palliative care team should be able to help too. Some support groups have special meetings for carers, and individual counselling may be available. However, one woman we talked to said that her husband didn’t feel a need for a support group or individual counselling, perhaps because he could talk to her and other members of the family.
Some areas have special centres for carers where advice can be obtained. In Oxfordshire and some parts of London the Befriending Network has volunteers who are trained to offer support to people with a life threatening illness or who are dying at home. The Buddhist Hospice Trust also has a volunteer befriending scheme for non-Buddhists as well as Buddhists, and the Terrence Higgins Trust provides a befriending service for people with AIDS. Some hospices have local befriending schemes too.
For more information on being a carer, see our carers information.
For more information, see resources.