Caring for someone with a terminal illness

Lynne ' Interview 26

Female
Age at interview: 53

Brief outline: Lynne's mother was diagnosed with breast cancer in 2009. A year later the cancer had spread to her lungs, liver and neck. Lynne juggled caring for her mum while working fulltime and found it very difficult to get the help and support they needed.

Background: Lynne is married with two adult children. She works as a project administrator. Ethnic background' White British.

Audio & video

Lynne’s mother was diagnosed with breast cancer in 2009. She had a lumpectomy and afterwards attended regular check-ups. She stayed in good health for about a year, but then near the end of 2010 it was discovered that the cancer had spread to her lungs, liver and neck. Lynne’s mum was offered chemotherapy to treat the cancer, but she opted against it because with there being no guarantee of its success and her being 84 years old, she decided it was not worth going through such a drastic treatment. Lynne’s mum asked how long she had left to live and she was told that they could expect 12 weeks, but in fact she died only 6 weeks later.

Once at home a Macmillan nurse visited and a district nurse arranged to come twice every week, however Lynne was very dissatisfied with the quality of care from both agencies. Lynne had assumed that they would receive the help they needed during this time but was surprised to find that a lot of the care duties were left to her. This put Lynne is a difficult situation because she worked fulltime and any time she took off she was not paid for. Lynne was astounded that the reason they couldn’t receive more help was because she worked fulltime. This meant she had to juggle working fulltime with caring for her mum, which impacted on her financially and left her mum without sufficient care.

As her mum’s condition worsened Lynne really began to despair. Her mum’s mouth became sore and she was constipated to the point where she was unable to eat much and she started losing weight rapidly. Her legs became very swollen with a blood clot and she was in a lot of pain. Lynne called a Macmillan nurse who visited on two occasions and filled out some forms, but no practical action was taken to help. Lynne felt desperate as she couldn’t stand leaving her mum in pain at home while she had to go to work. Every morning Lynne spent hours getting her mum out of bed, washed, dressed and comfortable with a phone to hand. Lynne would come home at lunchtime and call her mum every hour to check she was okay. The district nurse continued to visit twice a week, but Lynne describes how this nurse did very little to help. Lynne explains how she felt very lost and confused about how and where to get care from and describes how she was, “stumbling along trying to do the right thing”. She would have really appreciated it if someone sat her down and explained to her exactly what options were available.

Eventually, Lynne managed to get some suitable help when she called a hospice who suggested that her mum came in and stayed for a few days to assess her condition and give Lynne some respite. Lynne was very impressed with the care the hospice provided; they gave her mother morphine for her pain, treated her constipation and immediately diagnosed her sore mouth as thrush. Lynne was so relieved that her mum was finally getting adequate care, but was also ‘extremely angry’ that the district nurse had not previously recognised and treated these problems which had persisted for weeks.

After just one day in the hospice her mum seemed much happier and more comfortable. She remained happy for a couple of days and then on the fourth day she became very weak and lost consciousness. Lynne was unsure what to do and a hospice nurse advised her to go home to rest and come back the next day. During that night Lynne received a phone call from the hospice to inform her, that her mother had died. Lynne is sad that she was not with her when she died, but is also relieved as she doesn’t know how she would have coped with her death.

On reflection Lynne believes they did not have a good experience and were let down by social services in terms of the care her mum received. However, Lynne is incredibly relieved that her mum was in the hospice and comfortable before she died. She advises others in similar situations to do lots of research and not just rely on the system to help.

 

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