Family Experiences of Vegetative and Minimally Conscious States

Grief, mourning and being ‘in limbo’

People we interviewed often said they felt their grief remained raw and that they were unable to grieve the person they had ‘lost’ to the brain injury. They found it difficult to recall any happy memories of the person, or to move on and mourn as you might after a death.
Ann recalls feeling it was the right time for her daughter to die after she had been in a coma-like state for some time. Ann had said her goodbyes and “it was days going into weeks and months... and I was thinking ‘Yes, I would like it to end now because I really want to remember her’.” She added: “now I don’t know if I ever will remember her as she was.”

People often talked about feeling trapped in limbo and being fearful of the future.
The academic psychological and medical literature has documented the type of feelings families discuss here. The literature describes such feelings as ‘prolonged grief disorder’ as if it is a psychological problem within the individual. The overlapping accounts family members give here, however, suggest their responses should perhaps not be seen as a ‘disorder’, but as an entirely normal reaction to a very abnormal situation.

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