Caring for someone with a terminal illness

Susan ' Interview 07

Age at interview: 72

Brief outline: Susan's mother was diagnosed with Alzheimer's in 1998 when she was 86 years old. Susan cared for her mother at home after she was involved in a car accident and it was apparent that she was becoming unable to cope alone.

Background: Susan is a retired air stewardess. Susan is married with three adult children. Ethnic background' White British.

Audio & video

Susan began to notice a change in her mother’s behaviour; her mum was always flamboyant and sociable but she started to be a bit difficult and rude to people, which was very out of character for her. Initially Susan got quite angry with her mum but she started to realise that her behaviour was a result of her Alzheimer’s and she became more accepting. Indeed there were times when her Mum’s behaviour was amusing as she would say exactly what she thought, regardless of the social situation. Susan’s mother also started to become forgetful, which she initially tried to hide from the family.

Susan’s mother had a serious car accident and was taken to hospital where she stayed for several weeks. Before she returned home, Susan had aids fitted in the house to help her mother such as rails and handles in places around the home. She also removed rugs that might cause her mum to trip up, and put weights on tables that her mother used for support as she moved around so they would not tip up.

Susan investigated local care homes, in case she eventually became unable to cope with her mother’s care, but she hoped she would not have to use them and that her mother could remain at home in her care.

Susan’s mother loved her food, so Susan prepared 3 meals a day for her. Susan also bathed her mother twice a day (morning and night) to ensure she was clean and comfortable. Susan found caring for her mother was a process of learning how to cope with her Alzheimer’s and work around her mother’s forgetfulness and moods. Every day Susan would take her mother for a walk to help her remain as physically fit as possible and stopped her becoming bedridden.

Initially Susan did all the caring for her mum, which gradually took up more and more of her time. Her husband was very supportive but Susan realised that their family and social life were suffering and also she found she was becoming exhausted with the demands of constant care giving, so she employed a carer to live-in and help with her mother’s care. It was difficult to find a good carer and Susan had several agency carers before she found one that fitted into her home and was good at helping with her mother.

Susan gave up playing team tennis, which she loves, while she was caring for her mother although she was able to play singles and found that playing tennis was a tremendous break as she forgot everything else while she was on the tennis court. Susan also found that she no longer enjoyed leisurely shopping trips. Instead she would shop very quickly, making instant decisions about her purchases, and then come home and find that she had bought something that she really didn’t like very much.

Susan’s mother died at home. Susan had anticipated that the time was near and been assured that her mother, would slip into unconsciousness and quietly pass away. However her mother became very distressed and was in a great deal of pain at this time. Susan called her GP, but he didn’t carry morphine with him, so he had to collect it from the chemist, which took a very long time as he couldn’t collect it until the evening. Susan found it very distressing to see her mother in such pain for many hours and after her mum died she kept reliving the experience. She now dreads getting old herself in case she has to be hospitalised.

Susan was aware of her mother’s wishes regarding her funeral. Susan arranged the funeral but did not attend herself.

After her mother died Susan had to sort out all the legal paperwork and she found it was often difficult to deal with all the various systems at the banks etc. After her mother died Susan found there was a gap in her life, where she had been fully occupied caring for her mother she now had time on her hands. She plays tennis more now and gives occasional luncheon parties, but her social life is not the same as it was before she started caring.

Susan found her beliefs supported her during her role as carer.

Susan will always remember her mother as happy.


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