Caring for someone with a terminal illness

Anne & Jim ' Interview 25

Female
Age at interview: 75

Brief outline: Anne's husband Jim has progressive supranuclear palsy, which is a degenerative disease. Since his diagnosis he has gradually deteriorated to the point where he is now in a nursing home.

Background: Anne is married with two grown-up daughters. She is a retired personal assistant. Ethnic background' White English.

Audio & video

Anne first noticed her husband Jim’s behaviour changing in 2003 when he would complain about suddenly feeling unwell, started having falls and would sleep more often. During the next three years he had various tests to examine his heart and blood with no diagnosis. One day when Jim had a fall they called his GP, however another GP was sent because his usual GP was unavailable. This GP suspected it may be due to a neurological problem and after some tests were carried out a diagnosis of progressive supranuclear palsy (PSP) was confirmed. PSP is a degenerative disease which begins by affecting balance, movement and vision and eventually may cause people to lose their ability to walk, talk and swallow, with an inability to focus.


From the diagnosis Anne describes how Jim’s falls became more frequent, however at first he was still able to drive his car and kept on top of running their household accounts. Anne and Jim decided to move closer to their daughter as they foresaw that they could use her help and support in the future. Gradually Anne had to take on more and more household responsibilities as Jim’s condition worsened. He could no longer drive, so she did all the shopping, he could no longer wash up dishes and she had to wash and dress him in the mornings. When Anne could no longer manage with showering him a carer came to help, but soon the carer found it too difficult and had to stop. It was at this point Anne and Jim decided he would be better in a nursing home. Anne explains how Jim agreed to going into a nursing home and she would not have allowed it without his consent.


Now Jim is in a nursing home and his condition continues to gradually deteriorate. He now spends much of his time sleeping. Anne describes how, “He’s here, but he’s not” as it seems his personality is slowly disappearing and communication is difficult. She describes how she feels “numb” and believes she “puts up a brick wall” to protect herself from emotions which may be potentially devastating. For this reason her daughters have been encouraging her to get some professional counselling.


Anne has had to learn to be more independent without her husband around. She explains how one of the most difficult things has been learning how to manage household finances as this used to be Jim’s responsibility. Anne is learning how to ask for help with things as she herself has mobility problems and often needs advice with technical things her husband would have previously dealt with. Luckily they have daughters and sons-in-law who are very supportive and are always on hand to help out.


Anne often feels frustrated that she cannot do anything to help Jim, except keep him company, and she finds it difficult not knowing how long Jim will live for. Jim has a living will; towards the end of his life he wishes to be moved to the hospice, where currently he spends two days each week. He also does not want to be resuscitated or be treated with antibiotics. Anne explains how Jim’s living will provides her with some comfort.
 

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