Caring for someone with a terminal illness

Henry & Jane ' Interview 15

Age at interview: 63

Brief outline: Henry cared for his partner Jane after she was diagnosed with bowel cancer in 2005. She had surgery and chemotherapy. Brain metastases were treated with radiotherapy. He supported her throughout her illness and she died at home with her family around her.

Background: Henry is a political advisor and is single with 3 adult children. Ethnic Background' White British.

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At age 53 Henry’s partner Jane began to experience gripey abdominal pain while on holiday. On her return a consultant removed a contraceptive coil which he thought was causing the pain. The pain subsided for a while but then returned, so Jane went to her GP, who referred her for tests. After a while Henry felt frustrated that they still didn’t know what was wrong, so he suggested she went private. During a check-up at a private hospital she was told she had an ulcerous area in her bowel.

They went abroad on holiday but returned to the hospital immediately afterwards and was told that Jane had bowel cancer. Henry looked for information on the internet and had been shocked at the survival statistics he found, so he never looked for information about the condition again. Within a few days of the diagnosis Jane had an operation to remove the tumour but she lost a lot of blood and needed a second operation a few hours later to remove her spleen. Two days later Jane’s blood pressure dropped dramatically, her condition became critical and she had a 3rd operation.

A few days later Henry realised that he and Jane had emerged from a meeting with an oncologist with very different perspectives on her future. He thought her life expectancy was low whereas Jane maintained hope that she would make a full recovery. She underwent a course of chemotherapy and then went on holiday. Henry didn’t always accompany Jane to her consultations because he found it difficult to cope with. At one visit she was told the tumour hadn’t spread any further, which gave them both a lot of hope.

After a few weeks Jane awoke in the night with a terrible pain in her leg and Henry rushed her to A&E, where they waited a long time for attention, which made him angry and upset. Two months later he heard a thump and found Jane on the floor having a seizure. He was distraught and thought she was dying. He rang 999 and she was admitted to hospital where she had a variety of tests including an x-ray of her head, which showed an abnormality in her brain. They were told to go home and enjoy Christmas. When they returned she had more tests and it was confirmed that she had 5 tumours in her brain. These were treated with radiotherapy, which caused her to lose all her hair.

After the treatment Jane was told that she also had tumours on her lung but she still seemed convinced that she would survive, although it was clear to Henry that she couldn’t have long left. At this point they went to the GP’s surgery to get a form signed so that she could give up work. Henry saw that the reason stated on the form was ‘terminal illness’ and tried to keep this from Jane, but she demanded to see what it said and became very upset.

After that Jane gradually deteriorated and she began to experience periods of confusion. She also needed a wheelchair and a stair lift. She took to sleeping downstairs while Henry remained upstairs, but Jane would phone him if she needed him. One night she fell on coming out of the toilet and he had to call the paramedics to help him get her up again. Later they engaged a carer from the council, who did housework and gave Jane her breakfast. They also had Marie Curie nurses come to the house at night to keep an eye on Jane while he tried to sleep. Henry was less impressed with some of these nurses than he had been by the Macmillan nurses he had dealt with.

Jane finally accepted that she was going to die and gave him some instructions, which included finding a new partner after she was gone. They discussed her funeral, and she had very clear wishes. They also both sorted out their wills, including leaving a sum to each other. Jane also advised all her children individually on what she would like them to do with their lives. She also contacted her ex-husband who came over from the USA to visit her.

A few days before she died Henry and Jane attended a Buckingham Palace garden party, which Henry had obtained tickets for through his job, and Jane thoroughly enjoyed being there and meeting the queen. Henry then consulted the GP about whether there was any point in Jane continuing to take morphine pills. The GP said no, so in discussion with the whole family it was decided that she should go onto liquid morphine. Jane died at home 24 hours later with her family around her.

Jane had been looked after partly in the NHS and partly in the private sector, and Henry had found that staff in the private sector had seemed more empathic. They had both received good support from the Macmillan nurses but he had not always been made to feel as valued in his caring role by other professionals as he would have liked. He believes it is important that carers should be made to feel well supported and considered because they are being relied upon by the ill person.

Henry and Jane had received fantastic support from friends throughout Jane’s illness. Henry had continued to work most of the time but had wanted to be with Jane to support her, although at times the stress of his caring role had caused slight tensions in their relationship. Although he felt he had been going through ‘a private form of hell’, he had gritted his teeth and got on with what he had to do to give Jane as much support as possible. It had been important to him that he had made it clear to her adult children that he was there for her and would not abandon her even though their relationship had been relatively short.

Several years after Jane’s death Henry is with a new partner and very happy.


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