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.
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.

Last reviewed December 2017.


Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.

Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.

Make a Donation to

Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email