Family Experiences of Vegetative and Minimally Conscious States

Peter, Olga & Andrew

Male

Brief outline: Theo’s life was going well, and he had just set up his own hair-dressing business when, in 2005, at the age of 34, he was severely injured in a car accident. He emerged from a coma after a few weeks and appeared minimally aware, he has gone on to make some significant recovery in spite of doctors’ grim predictions. Nine years after the accident he is now looked after at home, by his family and a team of professional carers.

Background: Peter and Andrew are the older brothers of Theo. Olga is Theo's sister-in-law (Peter’s wife). Peter previously worked as a DJ, but now both he and Olga concentrate on looking after Peter’s younger brother, Theo. Andrew also visits regularly to give support.

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Theo was involved in a car accident and left in a coma. He emerged from his coma after a few week, and for a long time appeared to be in a vegetative or possibly minimally conscious state. However, from very early on his family noticed the Theo would look towards things that interested him and cry appropriately. They felt he wanted to live and were confident that he would recover.

His family are critical of problems with his early care but eventually Theo was in a very good care home and received skilled nursing and therapies. However they still felt he was unhappy being away from his family and believed he would benefit from being in a home environment, participating in familiar religious and cultural events and being able to experience simple pleasures such as being be able to smell traditional Greek food cooking in the kitchen.

Theo continues to need ventilator support and artificial nutrition and hydration and requires 24/7 care. However, he is now fully conscious and can now communicate sources of discomfort and has some ability to swallow. He demonstrates emotion and understanding. P describes how his brother is able to read short sentences and can point directions. He also seems to have some long term memories and can get pleasure from looking at photographs and watching television. Theo appears frustrated by his inability to walk and talk but his family reassure him that there is still hope of further recovery and they can calming him down. It is heart-breaking for the family to see Theo in his current state but they celebrate every little step forward and hope he will prove the doctors wrong in future.

These interviewees are unusual in caring for their severely brain injured relative at home – and they describe the challenges of attempting to do this. P and O describe how for Theo at home means that they have lost privacy, intimacy, and the ability ever to detach a little from caring for Theo. They feel isolated and describe lack of support for families in this position. In some ways caring for Theo has become like ‘a prison sentence’, but they do it because they are desperate to help him.

The family feel that doctors in intensive care were too ready to give up on Theo and were dismissive of his potential for recovery. O, says ‘If God wanted him to go, he would have died then [in intensive care]’. She is also critical of clinicians presuming to predict life expectance: ‘It’s only up to God. If God wants you to go when you’re a baby then you go when you’re a baby, …he gives people different years to live. So who are doctors’ to tell us’. Theo’s family hope that one day he might be able to talk. P’s advice to doctors is: ‘they should always give you a little hope and add that word God, that’ll make people happier. …, [doctors should say], ‘we don’t know, only God knows’.

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