Leukaemia

Support from a spouse or partner

Support from loved ones is crucial in helping people to cope with cancer or leukaemia. Many people said that their husband, wife or partner had been a great support, had ‘been there’ for them and encouraged them. Some said their partner had been calm and strong, others attentive and practical. Several knew that their partner had put on a brave face at times and hidden how they really felt. Frances knew that her partner, who was generally very strong, had on occasion found things too much and had ‘crashed’. Joanna often became very upset when at home alone while her husband was in hospital.

Some people find it hard to talk about illness or to know how to help; ill people can find it difficult to accept help, especially if they are used to helping others. Elsa’s boyfriend advised her to let others help her for a change. Some people’s partners found it difficult to cope with the illness and couldn’t always give them the support they needed. In some relationships this caused conflict (see ‘Self-image, sex and relationships’). Some partners were ill themselves so were limited in how much they could look after someone else.

Partners often feel helpless when watching their loved one suffer, but finding practical ways to help can relieve that. People said that partners had done the housework, brought them cups of tea in bed, looked after the children, searched for information about the illness, sourced headgear to cover hair loss from chemotherapy, and reminded them to take medication; some even injected drugs for them at home, such as interferon or G-CSF. Joanna got a disabled parking permit to allow them to continue to go out when her husband’s condition got worse.

Some partners had been present when the diagnosis was given and subsequently told selected friends and family on their behalf (see ‘Telling others about the diagnosis’). Partners often continued to update people on progress throughout the illness and to protect their loved one from other people’s emotional reactions. At times partners had to liaise with hospital staff and be involved in making decisions about treatment.

Many people found it helpful to take their partner with them to hospital appointments, not just for moral support, but also to help remember what was said and what questions to ask. Glyn’s wife took notes of the conversation. Janet’s husband usually accompanied her to the hospital but not into the consulting room. When Elsa was feeling poorly and went to Accident & Emergency she found it invaluable to have her boyfriend there to explain her medical history to staff. Mike’s wife accompanied him on courses at the Maggie’s cancer support centre.

People treated as inpatients said their partners spent much time visiting them in hospital and often brought food to encourage them to eat when hospital meals seemed unappetising. Some were grateful that the hospital was near their home because their partner could easily come and go. Others who were treated further away from home said their partner or other close relative had often stayed overnight in their hospital room. Julie’s partner had slept in a chair or on a camp bed every weeknight; each day he went to work at his nearby office and visited her during his lunch break. Neil’s wife stayed when he had septicaemia but he hadn’t always wanted her there.

Juggling the various demands of their lives alongside supporting their sick loved one was a challenge for many partners. Some managed to continue working, others had negotiated long periods off work from a sympathetic employer. While Elaine was in hospital her husband stayed away from work for 8 months on full pay to look after their children and do the housework. Although Joanna found it difficult at times to keep working, she decided not to give it up completely as she would have no income if her husband died from his leukaemia. Marilyn’s husband was retired but he stopped going fishing, cycling and playing golf to spend time at home with her while she was on oral chemotherapy. Some employers were less understanding and people had to leave their job.

Some people with leukaemia believed that dealing with the illness could be at least as hard for partners as it was for them, because partners had to deal with all the consequences while watching their loved one suffer. Some people felt guilty about the amount of stress their partner was under. Some had to cope with the illness or death of a parent at the same time. Elaine felt sorry for her husband because his mother had died of cancer five years previously, in the ward that she was in.

Many people with leukaemia recognised that their partner needed support of their own and were comforted that they had family and friends to turn to for help. For instance, after spending the day at the hospital with her, Frances’ partner would sometimes have a meal and a chat at a friend’s house.

While Deb was in hospital, his wife received help with childcare from his colleagues and others in the local community. They later decided to send the children to live with family in India; his wife now divides her time between looking after him and visiting the children.

People whose partners die from leukaemia can be affected by the loss of their loved one for a long time.

Some people were single or widowed at the time of their illness and had no one close to confide in. One woman was glad she didn't have a partner at the time because several people shared the burden of her illness, rather than just one.

* CLL- Chronic lymphocytic leukaemia

Last reviewed: August 2015.

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