Caring for someone with a terminal illness

Sarah ' Interview 23

Age at interview: 57

Brief outline: Sarah cared fulltime for both of her parents who had Parkinson's disease in the years leading up to their deaths, which occurred a few months apart. She was very close to her parents and describes caring for them as a long haul but a privilege.

Background: Sarah gave up work as a youth and community worker to care for her parents. She is married with three adult children. Ethnic background' White British.

Audio & video

Sarah cared fulltime for both of her parents who had Parkinson’s disease in the years before they died. She started off by travelling to and from their home in London, then eventually, when their conditions worsened they moved into the flat which was attached to Sarah’s family home. Sarah remembers how her mother was relieved about this new living arrangement and settled in better than her father who found it harder to accept the change. Sarah describes how her parents needed 24 hour care; it was an intense time and a massive shock to suddenly be responsible for caring for her ‘ageing and poorly parents’.

Sarah believes that it is very important that carers take the time to look after themselves, not least because they have to be well to carry out care duties effectively. She attended meetings for carers and discusses how this helped her feel supported. She also organised for carers from a private agency to help for some time each week, which allowed her to have some respite. When she needed to go on holiday, her brother was able to step in and take over care responsibilities.

Sarah’s father was admitted to hospital after collapsing and he died two days later. Once in hospital his condition deteriorated and the family had the chance to say their goodbyes. He died during the night time. She discusses how it was a relief he didn’t seem to be in any pain. She describes how after his death, it was simpler to take her mum out to concerts, parks and gardens because they no longer needed someone at home to care for her father.

Months later, Sarah’s mother had a fall and was taken to hospital to have a knee replacement and remained there for 12 weeks. Once discharged, it was hoped she’d pick up and recover, but Sarah remembers thinking after two days that her mother had come home to die. One week later Sarah’s mother died peacefully and Sarah describes this process as an ‘amazing experience’. She remembers how during this final week her mum enjoyed her surroundings; she saw the snow in the garden, listened to music, looked at paintings and had flowers and candles in her bedroom. Sarah believes that once she was at home she felt comfortable to die there. Sarah was with her mother when she died and describes how it was very peaceful and seemed painless.

On reflection Sarah feels it helps her now to know that she was there for them both, made their final years happy and could not have done anything more for them. She recognises that she was very lucky that they had the financial means to be able to buy in care; she had great family support and believes she would not have even entered into providing the care without this. Sarah was very close to her parents and describes caring for them as a long haul but a privilege.


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