Caring for someone with a terminal illness

Jacqui & Terry ' Interview 28

Female
Age at interview: 60

Brief outline: Jacqui's husband Terry was diagnosed with Chronic Obstructive Pulmonary Disease (previously known as emphysema) sixteen years ago. As his condition worsened Jacqui provided fulltime care for the last ten years of his life. Terry eventually died peacefully with his family around him.

Background: Jacqui is a widow with three adult children. She is a retired cleaner. Ethnic background' White British.

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 Jacqui’s husband Terry was diagnosed with emphysema and over the next 16 years his condition gradually worsened until he died. At the time when he received the diagnosis, Jacqui believes that Terry was unaware of how serious emphysema is. Jacqui remembers how they were not given much information about the illness, but believes that Terry preferred it that way. During the next few years Terry’s condition remained relatively stable, but after a few years he deteriorated and needed fulltime care. Terry had to use a nebuliser and 24 hour oxygen.

Throughout their marriage, Jacqui describes how Terry had always been the strong, supportive and dependable one. However the roles reversed as she started caring for him. One day Jacqui went to the hospital for a routine examination and ended up in intensive care after complications. She had to spend a month recovering in hospital and organised carers to come in and look after Terry. When she returned home she found their care to be poor quality and unreliable and so she cancelled their services. When Jacqui had to return to hospital she organised care from another agency which was much better.

Terry’s condition continued to worsen and at one point it was recommended that they got him a hospital bed at home. This devastated Terry and Jacqui because sharing their bed provided them both with comfort. A nurse from a hospice started to visit and explained to Jacqui the options that she did not realise they had, one of which was to get rid of the hospital bed. Jacqui did not realise they had that choice, and immediately got rid of the hospital bed.

As time went on Jacqui often became worried about Terry, and doctors frequently visited. They warned her that Terry may die soon and advised that he should be taken into hospital. However Terry was adamant that he wanted to stay at home. During a particularly bad episode Jacqui called for an ambulance and Terry was taken into hospital. Once in hospital Jacqui describes how he smiled, fell asleep and died. She remembers how his death was peaceful and he had his family around him. Jacqui does not regret taking him to hospital because it would have been difficult for her to cope if he had died in their home.

Jacqui explains how she used to spend all her time with her parents and husband, but now they have all died she often feels very lonely. After Terry’s death the State benefits they received stopped and Jacqui now struggles financially. Jacqui feels very lucky to have such supportive children, who are always there to help her with any difficulties.
 

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