Caring for someone with a terminal illness

Mary & John ' Interview 11

Female
Age at interview: 68

Brief outline: Mary describes how her husband died shortly after being admitted to hospital and was diagnosed with cancer. Mary talks about learning to run the finances of the home and to live each day as it comes.

Background: Mary is a retired teacher and an artist. She is a widow with 2 adult children. Ethnic background' White British.

Audio & video

Initially Mary felt concerned about John’s health and wanted him to see a private consultant as he did not seem to be getting anything from his GP; but John refused. It was some time later while Mary was away in France that John was taken into the Accident and Emergency Department of their local hospital with a urinary infection; unable to walk unassisted, unable to coordinate, confused and with weight loss. Fortunately her daughter was able to be with him until Mary was able to get back.

While John was in hospital he had various tests, but they were not told the results so why John was unwell was a mystery to them. Mary asked the consultant to contact her and she was told there was a worrying shadow on John’s lung and ‘something nasty’ going on in his body. Mary thought this sounded threatening and talked to a counsellor she knew who said he thought it was cancer, but despite numerous test over the next few weeks it was still unclear what was wrong with John.

Every day Mary would visit the hospital hoping to see an improvement and that John would be better, but instead she saw a decline in his health which she found very frightening. Both John and Mary felt afraid as John’s condition deteriorated but both of them tried to hide their fears from each other. Mary felt she had to be strong and to cope, but she felt very agitated that John was declining and no-one had talked to her about a diagnosis or a treatment pathway.

John found the hospital ward very noisy and felt his sleep was disturbed. Also he and Mary were aware that another patient on the ward had died and this was very sobering and depressing. Mary arranged for John to be transferred to a BUPA hospital where he had his own room. Within 48 hours John had a treatment plan and Mary felt more relaxed that he was now being taken care of in a way she would like. Further tests resulted in the diagnosis of cancer and he was referred to an oncologist.

John was unsuitable for chemotherapy and was put on palliative care; Mary did not understand what palliative care was but wrote to the nursing station asking to be told if John’s condition was terminal. The consultant spoke to Mary and told her John’s condition was terminal and he only had a few weeks left. Mary felt she should discuss the options with John, but his health declined rapidly.

Mary was grateful to a nurse who explained the dying process to her as it helped her to be prepared and to be strong. She wanted John to just think he was going to sleep, not to be fearful or in pain.

Mary had a mattress put in John’s room so she could stay with him and was with him when he died. The experience of John’s last moments was awe inspiring for Mary and has changed her life.

Mary felt that the day after John’s death she was on auto pilot. Her brother-in-law helped with all the hospital paperwork, including an agreement to have a post mortem. He also took Mary to the undertakers. As the youngest in the family she was not used to having to organise funerals or make decisions and now suddenly it all seemed to be her responsibility. There was a great deal of paperwork arriving for Mary to deal with and she spent a lot of time in her study trying to understand the various bits of paper. John had always looked after all the finances so it was initially daunting for Mary.

Her daughters, their partners and their children came and stayed with Mary at this time, but she found it difficult to cope with being sociable and would spend long periods in the office, organising the paperwork and organising her thoughts.

Initially living with the loss of John was almost unbearable, and Mary didn’t think she could ever survive such pain, but as time has gone on she has learnt to take each day at a time and to plan her days.
 

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