Family Experiences of Vegetative and Minimally Conscious States

Angela

Female
Age at interview: 50

Brief outline: In 2011, at the age of 66, Angela’s husband, a talented musician, had a cardiac arrest while in the recovery room after an operation. He was resuscitated. At first, the medical team were reassuring, but it turned out that he had suffered catastrophic hypoxic (oxygen deprivation) brain injury and he has remained in a minimally conscious state ever since. Has become progressively less responsive over time.

Background: Angela works as a receptionist, and her husband was the night duty officer, for the same funeral parlour. They were also musicians together, and had been in a relationship for 27 years prior to his injury.

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In 2011, at the age of 66, Angela’s husband, suffered severe anoxic brain injury. When we first met Angela in 2012 she was fighting to ensure her husband received specialist care. She wanted his medication reviewed and for him to be formally assessed in the hope that he might be able to obtain rehabilitation and make the maximum recovery possible. There were clear signs of response at the time: he wept on their anniversary and sobbed when she played a song from him: “and though that’s heart breaking to see it was great that he was feeling something”. He was diagnosed as being in a ‘minimally conscious state’. Although she accepted that: “the clever guy that I love is never going to come back” she hoped she might be able to bring him home and that they could have a different future together. Looking back she knows that her hopes were unlikely to be realised but says now: “love can trick you into believing that maybe it’ll be okay.” 

Meeting again in early 2014, Angela feels that there is hardly any response from her husband now at all. “He’s looking in your direction but there’s no connection there …the last time I saw him standing upright was on his way down to surgery. And I don’t know if he’s ever heard or seen me since”. She says: “You go from hoping for a full recovery to partial recovery… any recovery, but there’s no coming back”. She needed to try everything to “give him a chance” but now feels: “all I want to do is make sure that it’s as stress free as possible. I don’t want him to suffer any more in any way”. She has agreed to a palliative pathway for him: “Decisions I never wanted to have to make. They’re not my decisions to make, they shouldn’t be mine. They should be his.” She loves him passionately and does not know what he is experiencing now, but “I just would hate to think of him being afraid or lonely”.

Asked about the impact on her she says: “You’re in pain all the time. There’s not a minute you’re not. You can't un-break your heart”. Her grief remains completely raw, and she is in constant terror of finally losing him, although she now feels it “would be easier to be his widow, than his wife”.

Angela’s message to other families is: “Find out as much as you can about how you can help the person you love. And then don’t stop … just don’t give up on them. Because you might be the only one they have really, underneath it all, you might be the only one to look out for them.”

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