Family members we spoke to were often absolutely determined that their relative would improve or get the best quality of life possible. There was sometimes a feeling that the family had united to defy the pessimism of clinicians who doubted that the patient would regain any quality of life. Sometimes doctors were seen to have made judgments about quality of life that were alien to the family’s cultural point of view (including their religious faith, or views of family life).
The message about serious brain injury generally in the media is that it may be a long road to recovery, but that love, determination and patience can get you there. This was a message that many families had taken to heart, and worked hard to make reality. Helen says ‘I was absolutely convinced that there was hope if sufficient love, sufficient determination, sufficient faith, were thrown at it’ and Cathy comments: ‘I think my mother possibly was a doctor in another life – she read up on everything’, she described the family’s dedication to home caring and added ‘I just had this great effort of will. I just believed that by doing all this stuff that it would all be okay in the end.’
Some of those we spoke to saw their determination as, in retrospect, misguided in a hopeless situation, but still felt they had had to do everything they could to fight for the possibility of recovery.
Others, however, felt their determination had born fruit, and if the person had recovered some consciousness, they celebrated any ability to smile or take pleasure in the smallest things in the most extraordinary of challenging circumstances.
The progress of the injured person, in defiance of expectation, was sometimes talked about as a source of pride. For example, although Verity talked at length about grieving the loss of her son (see ‘Grief, mourning and being ‘in limbo‘), she also takes pride in his ability to survive and make progress long after he had been ‘written off’.
Verity has learnt to take pride in her son.
Similarly although Peter, Olga and Andrew are devastated to see how much their brother/brother-in-law has lost, they take pride in everything that he can do (see ‘Recovery‘). Peter explains that although caring for Theo at home is very hard (‘it is like a prison sentence’) – he and his wife gain great satisfaction from the task they have taken on: ‘when you see how much progress he’s done, it makes it all worth it.’