Caring for someone with a terminal illness

Sue ' Interview 18

Age at interview: 63

Brief outline: Sue's father was diagnosed with dementia after a stroke, although he had already been occasionally forgetful or confused. Sue, her mother and sister, looked after him at home for 9 months until he was moved to a care home after a fall, where he died.

Background: Sue is a special needs teacher. She is divorced with 2 adult children. Ethnic background' White British.

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Sue’s father had been a very active man and played golf until his problems began at age 87 when he had four minor car accidents. Sue took him to the doctor after the fourth accident because he had a bad back. At this point she discovered that he couldn’t remember what had happened in the accident to tell the GP. The GP said he would have to notify the DVLC about the accident because of his age. Sue’s father decided to give up driving then rather than take another test, which meant using taxis to get around.

In the following weeks Sue’s father had episodes of forgetfulness and confusion. Then one day he had a stroke when Sue’s daughter was with him. He spent 3 weeks in hospital and was diagnosed with vascular dementia and became incontinent at night. The physiotherapists said that he wouldn’t be able to manage the stairs if he returned home, so Sue and her sister arranged for a bed to be put downstairs, and a commode, so that their father could come home. However, he didn’t want to sleep downstairs and tried to climb the stairs, so they called the physiotherapist back in, who suggested fitting hand rails to the stairway instead and that he should be supervised when using the stairs. He became gradually worse and needed to wear incontinence pads during the day as well as at night. He stopped reading and engaging in conversation.

After a while Sue realised that her mother was feeling worn out from looking after her father, so they decided to get professional carers in to help. Social services recommended a private care agency who supplied a carer for an hour in the morning and an hour in the evening. Sue’s father was initially resistant to letting the female carers help him with personal care, but later a male carer came who he related to well. After a few months Sue and her sister decided that their mother needed a break from their father at night, so they took it in turns to stay overnight. They slept in the same room as their father while their mother slept in another room. Their father now needed supervision 24 hours a day so their mother couldn’t leave him alone to pursue her own interests. After a while his dementia was assessed as being severe and it was suggested he should attend a dementia day centre twice a week to give the family some respite.

In December 2010 Sue was phoned to say that her father had fallen downstairs. He had been sitting in a chair with a rug over his legs, he got up to try to follow his wife up the stairs, and tripped over the rug. He was taken to hospital but they couldn’t keep him in because he had no injuries and Sue’s mother had told them that they had carers at home. However, after the fall Sue’s father could no longer weight-bear, and the carers could no longer deal with him, so Sue and her family realised they wouldn’t be able to continue to look after him at home. They tried for a few days but her father refused to let them help with personal care. They managed to find a dementia care home that had a room available for 2 weeks and arranged for him to be taken there by ambulance. The care at the home was excellent but he deteriorated, was unconscious much of the time and wouldn’t eat or drink. About a week later she was phoned by the home to say that her father had woken very distressed and his breathing was low. She was making arrangements to go there but before long they phoned again to say that he had died peacefully. Sue and her family went to the care home and spent about 2 hours with him after his death.

For Sue her father’s death was a release. She had found it difficult to look after him towards the end as he didn’t like her doing his personal care. In a way she feels glad he has gone as he had no longer been the father she had known. She was glad that they had managed to keep him at home for most of the time where he could enjoy the grandchildren’s company. Although her mother had wanted him to die at home, Sue was glad that he had not as she believes the family home might have been forever associated with his death if he had. Caring for her father had a big impact on her life as she felt she had to always be at the end of the phone, and she was often late for work after helping her mother, but fortunately she had a very understanding boss. However, she feels that she probably didn’t perform at her best at work during this period.

Sue and her sister had both worked in social care so knew how to find out about what help was available. However, things didn’t always happen as expected. For instance they had difficulty obtaining a consistent supply of the right kind of incontinence pads, people didn’t always phone back with answers to queries having said they would, and carers failed to turn up with no explanation. Sue feels strongly that agencies need to take even more care over these kinds of things when dealing with elderly carers like her mother.

Three months after her father’s death, Sue feels that her life is returning to normal.



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