Caring for someone with a terminal illness

Emma ' Interview 19

Age at interview: 44

Brief outline: Emma began caring for her mother when she developed signs of Motor Neurone Disease. By getting end of life care funding and help from live-in carers, Emma was able to keep her mother in her own home until she died.

Background: Emma is a higher level teaching assistant. She has children aged 9 and 11 and is separated from her husband. Ethnic background' White British.

Audio & video

Emma first noticed there was something wrong with her mother on their annual trip to the Wimbledon tennis tournament when painful knees prevented her from walking up the stairs to their seats. Soon afterwards, Emma accompanied her mother to see the GP where possible arthritis was discussed. Later her mother began to slur her speech and became wobbly when walking, as if drunk. After several more visits to the GP Emma’s mother was sent to the hospital for tests, including a brain scan. Nobody seemed to know what was causing her symptoms. Over time her mother’s mobility became increasingly limited and Emma had to walk her dog for her. Her deterioration was quite rapid and as she lived alone in a remote farmhouse, Emma visited her most days and arranged for friends to visit and for paid domestic help. Her mother had always been an active woman and found it hard to accept that she couldn’t manage. Emma felt scared and found it difficult to cope.

They started seeing a consultant on a weekly basis and after several visits he announced that Emma’s mother had Motor Neurone Disease (MND) and may only have a few weeks to live. She spent a week in a hospice, where they were introduced to a social worker who organised for a live-in carer through an agency. So Emma’s mother went home with the carer and Emma continued to visit most days while working full time and looking after her children. Her mother didn’t want any information about the illness but Emma was able to find out everything she wanted to know from a very supportive specialist nurse. A consultant offered to speak to Emma’s children, and explained in simple language about their grandmother’s illness and answered their questions. Emma took the children to see their grandmother often but wonders whether this had been the right thing to do.

After a while her mother’s condition stabilised for a while, although she could no longer talk and wrote on a special board with a magnetic pen. The carers were very good at understanding her. She had been allocated end of life funding for three months but after six months the Primary Care Trust said it would be withdrawn. However, with the help of the professionals, Emma fought this and won continued funding.

One day Emma’s mother complained of having a cold but Emma wasn’t unduly worried as she had recovered from colds before. But the next day she was worse and they called the paramedics. For the first time ever she seemed to be confused. She wouldn’t settle at bedtime and the carers had a very restless night with her. During the night they called Emma. She arrived moments after her mother had died and was able to prevent the paramedics from resuscitating her, in accordance with her mother’s wishes which had been written down previously.

Over the last few months of her life, Emma’s mother had a lot of carers all from the same agency and, although Emma thought they all did the difficult bits of their work with grace and dignity, she thought they weren’t as well trained as they might have been or well treated by the agency. Emma had not always found the agency helpful. Most of the carers couldn’t drive, so Emma had to do their shopping. They were all young and she sometimes had to look after them as a mother would. Most were from Zimbabwe and one turned out to be working illegally and had to leave. Towards the end of her mother’s life Emma had to get a second live-in carer as it took two to lift her mother after falls. When Emma’s mother died the carers were distraught and were not allowed by the agency to attend the funeral. One has been too upset to continue working as a live-in carer. The other now wants to train for nursing.

Emma found the whole journey very hard but felt she had to be strong for her mother. She continued to work as a teaching assistant throughout the period of caring for her mother. The teachers have supported her son well, who attends the same school. Emma was already having marital problems before her mother’s illness, this continued and so they broke up.



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