Caring for someone with a terminal illness

Georgina ' Interview 20

Age at interview: 47

Brief outline: Georgina cared for her mother, who had dementia and terminal bowel cancer. Georgina and her mum were very close and she describes how it was a pleasure to look after her.

Background: Georgina is single with no children and works as a library assistant. Ethnic background' White British.

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Georgina lived with and was very close to her mum when she was diagnosed with vascular dementia. She explains how gradually her mum needed more care, but Georgina barely noticed this because to her it felt ‘natural’. Eventually, Georgina’s mum did become quite reliant on her, although she was never a burden and at the time they preferred to think of themselves as a team.

Things worsened for Georgina’s mum when she experienced discomfort in her stomach and lost her appetite because food tasted strange to her. Georgina describes how this was particularly worrying because her mum was a fantastic chef and had previously owned a restaurant, and so it was very out of character. Her mum soon collapsed and was taken to hospital, where she had various tests but they did not find anything. She was given tablets to increase her appetite and was discharged from hospital. However, this did not solve the problem and they visited the GP, who prescribed enemas which they used for a week with no effect. Her mum was eating very little food at this point.

Georgina remembers a traumatic experience when after giving her mum her daily pills she found her vomiting black stuff. She called for an ambulance and once at hospital an x-ray showed a shadowed area in the colon, which indicated a blockage. The next day Georgina’s mum was operated on to put in a stent to relieve the blockage and it was suggested she would have a biopsy also. However after the operation the surgeon told Georgina that they were unable to do the biopsy, with no explanation as to why.

The next day the consultant arrived and Georgina immediately asked why there was no biopsy during surgery. The consultant told them that there was no point in doing the biopsy because he was sure the cancer had spread to the liver. This came as a massive shock to Georgina because at this point she did not even know her mum had cancer. The consultant then informed them it was palliative care only and left. Georgina believes the consultant was very insensitive and dismissive. She remembers feeling completely lost and confused and believed that because her mum’s condition was terminal, they were no longer of interest to the consultant. Georgina remembers how they had no idea about timeframes or how bad the condition was, and this caused confusion about the best action to take. Her mum was then discharged and Georgina spent a short time caring for her at home when her mum had a stroke, and was moved into a hospice to recover.

Once recovered from the stroke she stayed in the hospice. Georgina believes the hospice was a brilliant place which was more about living than dying. She explains how her mum was treated with respect and dignity. The staff members were frank and honest and understanding to their every need. Georgina visited her mum every day and could take her out as they pleased. On the night that her mum eventually died, Georgina was with her and feels grateful that her mum died peacefully in her arms.

Georgina was very close to her mum and describes her as, “The most remarkable human being, strong, funny, full of life, full of joy, gentle, sweet, not a malicious bone in her body.” When she became ill Georgina wanted to be very involved in her care and describes how “it was a joy to look after her”.



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