Family Experiences of Vegetative and Minimally Conscious States

Phil

Male
Age at interview: 43

Brief outline: In 2013 Phil’s 46yr old partner, Lewis, had a brain haemorrhage leaving him in a minimally conscious state.

Background: Phil is 43 years old. He worked as an investment consultant and has been with his partner, Lewis, for 16 years. Lewis was an IT project manager before being made redundant in 2011. He was just about to start volunteering at a local library when had his haemorrhage (aged 46). He was a keen chorister with a wonderful bass voice, had a wicked sense of humour and loved bridge and musical theatre. Phil takes some comfort from the fact that luckily, and “as a perfect illustration of not putting off to tomorrow what you can do today”, they had fulfilled one of Lewis’ ambitions and enjoyed a 3-month trip around South America in the first half of 2012.

Audio & video

In 2012, Phil returned home to find his partner, Lewis, collapsed on the floor from a brain haemorrhage (aged 46). He was rushed to hospital where he had an operation to remove a blood clot and was placed in an induced coma. Interviewed in early 2014 Phil says: “Denial and hope are the only two things that you can rely on to keep a positive attitude really…. you just have to hope. And all they’ll say is, ‘it was severe, but the brain does strange things’. They say the first six months really count, then the first year really counts and things drag on. And over time you lose the opportunity to be able to sit down with the right kind of people to try and discuss it properly, yet at the time you don’t know what to ask.” 

A year after his partner’s collapse Phil paid for a private consultant to review Lewis’s notes and scans. The consultant indicated that “the most we could hope for would be to get to a ‘yes’ or ‘no’ answer, which would be a good leap forward from today. But that’s likely to be it. So that would imply severely, severely disabled and dependent at the very best. So that was crushing.” 

Lewis’s level of cognitive ability seems to vary: “he occasionally looks at me with normal eyes and might mouth words very quickly and that’s when I know he’s more there” but for a lot of the time he is more distant. After a long period of unmanageable pain, (“every day he was in acute pain, grimacing and wincing and it was just awful”) Lewis is now more comfortable. He can now swallow and “anticipates food coming, you don’t have to touch his lips”. Phil’s greatest hope is that eventually Lewis might be able to communicate in some form.

Phil has given up work to be able to go in regularly to the care home, and has formed close bond with other relatives there: “they have become my other family and we provide each other with empathy and a form of unstructured, organic counselling”. He hopes that Lewis is not distressed by his current existence, even though Lewis had previously stated he would not want to live like this. “They say that if you are like this then your perspective changes, so you can't guarantee that he wouldn’t want to have an existence where he could have pleasure from my daily visits… and all those things. But if something serious happened to him health wise again we might look to see if he would be able to go quietly instead of fighting so hard to help him live, and that’s horrible.” Phil misses Lewis terribly and is in grief but: “you’re grieving for someone that you’ve lost but you’ve kind of still got them, you sort of hope that you’re going to get a bit more of them but you don’t know what, when, how or if … you’re in a hideous limbo”.

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