Caring for someone with a terminal illness

Katie ' Interview 13

Female
Age at interview: 43

Brief outline: Katie talks about her changing experiences caring for her sister in law, who stayed with her family when she needed help coping with her cervical cancer. Katie also looked after her young niece as her sister-in-law when too unwell to care for her.

Background: Katie is married with 5 children (aged 20, 13, 11, 8 and 5 years old). Katie was a voluntary classroom assistant, but is now a full time home-maker. Ethnic background' White British.

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Katie cared for her sister-in-law Sarah. Sarah and her daughter came to stay with Katie’s family for the first 6 months of her illness. She was feeling very unwell and struggling to cope with her health and the needs of her young daughter. Then during the last 11 months of her life Sarah stayed with Katie intermittently. Sarah did not want her daughter to know what was going on and it was very difficult for Katie and her family to keep up a pretence that Sarah would get better.

When Sarah first stayed with Katie, she was having cancer treatments and so she spent a lot of time in bed. Katie would take the children out as much as possible to give her a quiet time, but it was occasionally quite stressful trying keep the children quiet so Sarah could rest.

Once Sarah became very unwell and was receiving palliative care, she returned to Katie’s home. The occupational therapist arranged for the home to be adapted to help Sarah. A wheelchair was also delivered but it was difficult to use in the home. Later Sarah had a hospital bed installed in her bedroom.

Katie undertook most of the caring needs for Sarah, washing, dressing, cooking for her and helping with toileting. As Sarah’s condition deteriorated Macmillan nurses helped Katie with her care. Katie also found the Macmillan nurses were very supportive of her. Often Katie was able to talk to the Macmillan nurses about her concerns, which was a huge relief as she was trying to ‘keep it all together’. The family was also given a social worker to help the family talk through their fears and concerns.

Katie felt it was very important that she was a companion to Sarah, especially when Sarah became more ill and was no longer able to get downstairs and so spent nearly all her time in her bedroom. Sarah needed a lot of reassurance most of the time, although she didn’t really accepted that she was going to die until the last few weeks, despite being given information by her medical team.

Katie had to rely on a number of friends to help her to get children to and from school, and taking them out to the park or to play. Katie did all her shopping on-line at this time. Whilst Katie still did all the cooking, she did get a cleaner in to help with the housework. Cooking for Sarah could be quite stressful as she had little appetite and Katie would cook something she fancied as quickly as possible, so she could eat it before she started to feel nauseous. When Sarah had people visiting Katie would often end up cooking for 12 or 14 people, which was a strain on top of all her caring activities.

Katie made sure that she had a couple of hours away each week to meet up with her friends. She found her friends were very supportive during this time and she was able to talk through her concerns and feelings.

Sarah was in a great deal of pain and went into a local hospice for 10 weeks to get her pain under control. Once her pain was controlled and she returned to Katie’s home, she seemed to be able to think more clearly. It was much easier for Katie to be Sarah’s companion when she was pain free and thinking clearly, although she still had mobility problems.

It was only in her last few days that Sarah felt so unwell that she didn’t want to continue and she realised that she was going to die. Once Sarah had accepted that she was dying Katie was able to talk to her about her wishes in regard to funeral arrangements. It was a relief for Katie to know Sarah’s wishes so there were no family pressures regarding how the funeral should be.

Sarah died in the night and Katie arranged for the undertakers to collect her body before the children awoke. The family then told the children as they got up in the morning. The undertakers were in the same road as Katie’s home so she was able to visit Sarah several times before the funeral, which she found comforting.

It was hard for Katie to move from being responsible for most of Sarah’s needs to suddenly not having to care for her. She also missed the nurses coming in and out of her home every day.

Katie feels it was a privilege to care for Sarah, to share the best and the worst of her as she battled with her cancer.
 

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