Some of those we spoke to would love to take their relative home – they hate leaving them ‘in an institution’ or hope they might be more relaxed, or more conscious, in a home environment. Others are very disturbed by the idea that they might be expected to care for their relative at home.
Morag found it very painful to leave her father in a care home. She and her mother would have loved to be able to look after him themselves.
Mark was perturbed by the suggestion that he might be expected to care for his brother.
Usually it is completely impractical to care for such a severely brain injured patient at home – but we did interview a few people who did so. Rhiannon was caring for her vegetative daughter on her own at home and felt unsupported by the system, which failed to provide sufficient respite or financial support. She also felt totally isolated:
‘It’s almost like living with a dead person because there’s nothing back. You give all this to the person and there’s nothing. There’s just nothing coming back. There’s no communication. There’s no affection. There’s no – there’s nothing, you know. You’re doing this because you love them and you hope, you hope, that there is something in there that knowsI’m Amy’s voice. I’m her hands. I’m her feet. I’m her voice. I’m Amy. …Me doesn’t exist any longer.’
Shona’s husband had recovered full consciousness and she tried caring for him at home for a while – but it became too difficult, and she felt it had a negative impact on their son.
Shona ended up feeling like a caged animal’ trying to look after her husband at home.
Home caring is extremely challenging whether the person remains vegetative or recovers consciousness. A great deal of support is needed, and is not always forthcoming. One man caring at home said he and his wife felt they had no privacy now, and found it difficult to sleep or relax at in their own house – ‘We’ve sacrificed our marriage, we’ve sacrificed everything – we’ve been through a lot and nobody came to talk to us about how to cope.’
Another couple felt they had no choice but to take their son home, but reflected on the way having their son at home dominated their lives and affected the whole family.
They felt compelled to take their son home to look after him but now feel this was a bad decision.
Those who had attempted home care advised others to think very carefully before taking this on. They recommended ensuring that the appropriate equipment is in place in advance, and that respite care has been organised before starting out. They also said that people caring at home should not be afraid to change their minds.