Family Experiences of Vegetative and Minimally Conscious States

Bereavement after severe brain injury

Families of people in vegetative or minimally conscious states often feel they ‘lost’ their relative a long time before the actual death - families of people with advanced dementia sometimes feel the same way. Until the final (‘real’) death they are in limbo: the person is neither fully with them any more, but neither are they physically gone (for more see ‘Grief, mourning and being in limbo’’). The person’s death may be feared: death means that all hope for their recovery is lost. Or it may be wished-for as a ‘release’, finally allowing a peaceful end to the body of a person whose ‘spirit’ or ‘soul’ has already left. Either way, losing someone who has been in a vegetative or minimally conscious state for a long time can feel quite different from either a sudden bereavement, or a loss after a long illness in which someone has been conscious until the end.

One mother shared her diary entries for the days around her son’s death, eight years after his accident where she wrote about longing for a feeling of “The end” and hoping for a feeling of bereavement.
 

Some people said they felt a mixture of fear (at finally losing the person) and hope (that the person is released). Some of the bereaved were taken by surprise at how they felt. Daisy thought she had done her grieving years before and was hoping her brother would die. When he did: ‘although it was wonderful that his soul was free and that he was free and we knew that this was the best thing for him, it was a huge loss for us’. She found she was grieving the loss of the minimally conscious man she had looked after for so many years as well the strong, intelligent man he had been before his accident. Memories flooded back - filling her with raw grief. Other people we interviewed felt only relief or calmness – focusing on the fact that the person they loved was now at peace.
Sometimes people had spent so much time caring for their relative they did not know what to do after they died. Others were grateful to be able to move on with their lives.
Families often feel that their loved one has had ‘two deaths’ – the one that happened at the moment of injury, and the one that happened much later when they were finally ‘at peace’
The families who talked to us often reflected on how they might be able to mark their loved one’s ‘final departure’. One woman talked about her mother’s on-going existence over fifteen years after suffering catastrophic brain injuries. She said: 

“I fantasise about her funeral basically being able to be united and to celebrate her and you know remember her… we’re stuck. We’re all pressing against this glass wall. And when she dies... although it’s been so long, you kind of imagine it’s all going to be okay when she dies.” (Diana)

Another said that she would not want anyone to wear black at her son’s funeral because: ‘it’s probably a celebration that he’s finally been released.’ And Ann and Bea discussed how they had wanted a little time to say good-bye to Fiona and plan her funeral in the week after her accident - plans which remain on hold as Fiona is still alive (in a vegetative state) many years later. 

Bea: “I was really pleased that I’d had the chance to do that, she’d be really pleased with the decisions made for her funeral... planning a really nice do, and choosing the music was a decision of something that I could be proud of planning for her’.
Ann: ‘I was thinking, oh yeah, a month would be nice because, you know, we've had a chance to say goodbye to [Fiona], you know. And obviously, at that point, we didn't feel there was anything else we were going to be able to do for her.”

For those who had experienced a death, the funeral could be an important ritual celebrating the person as they would have wanted to be remembered. 

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