Do We underestimate how much support our relatives might need?

[Luckyone]

At our recent drop-in I was talking to another ex-patient who told me people always ask him how he is coping but never ask his wife how she is dealing with the trauma she went through not knowing if he would survive.

I know my own wife still suffers from the trauma of sitting by my bedside everyday for three months, even though it's over two years ago now, people always say how well I am dealing with things but never spare a thought of how she is, I think our close relatives are the forgotten one's.

[Hidden]

Hi. I am sorry to hear that your wife is still suffering. I am currently doing a project on the experience of people who care for a post-ICU patient once they return home so this is something that I appreciate is quite common, but not widely recognised. There is a newly proposed syndrome called post intensive care syndrome-family (PICS-F) and if she is having any psychological difficulties - flashbacks, anxiety, depression, sleep disturbance etc then she might want to think about speaking to her GP as they may be able to help. Unfortunately as GPs do not see many ex-ICU patients it is not always something they are particularly familiar with, and the impact on family members even less so. I have a very good journal article which explains this and I would be happy to forward on to you. You are absolutely right that the relatives often have their own 'mountain to climb' after ICU, particularly as their memories are very vivid, whilst patients often have little or no memory of part of what happened. Some ICUs do have a follow-up clinic/specialist service. Even if they don't it is also well worth her speaking to them about how she is feeling. I hope things begin to improve for her x

[Luckyone in reply to Hidden]

Hi Sarah,

If you could forward me the journal article I would be very grateful, my wife has just started some counseling that her employer arranged for her, unfortunately 2011 was a bad year for her, along with my 3 months in ICU she also lost her father 2 days after I was discharged to a ward and then lost her mother 6 months later, thankfully she's now getting the help she needs.

[Hidden in reply to Luckyone]

Hi Luckyone - not sure how to do this on the site - are you able to pm me so I can have an email address - not sure on board etiquette.

[AndJan]

My husband spent 3 weeks in CCU in January ,whilest staying strong for everyone,thro the horrors of intubation,and DNR ,I am angry,tearful,very nervous,and jump every time the phone rings (we were called night and day by the unit)My mood changes are sudden and very unpredictable.There is no help having asked ,we were told we could pay to see someone!We have located ICU steps,and such a relief to talk to other people who feel the same.There should be after care ,as relatives really need help too.

[engraved]

I am now almost 10 months post my ITU admission. My partner was and is the most wonderful man, and still my carer as I have significant physical disability since then. And he went through hell, whilst I wasn't "there". Fortunately, he had some decent coping strategies to start with and he did tell a selected few how he was feeling at the time. Since then, my family and close friends take extra care to catch him on his own, and ask him how he is. I think it's pretty obvious to them how hard it must have been, since it was hard, though perhaps less so, for them. I am aware that my friends are wonderful, but I did not realise quite how exceptional, perhaps. I think currently he rarely admits how hard it was, and continues to be, but we are able to talk about these deep feelings and how me "getting all the care" makes him feel. Despite many people asking, he currently isn't able/ wanting to open up to anyone else. That's his choice. It might not be the best may of handling it or what I'd wish for him, but he has that choice.

And although GPs, or a counsellor or group therapy type situation, might not see people with post-ITU-relative-of-a-survivor-shock syndrome or whatever you want to label yourself with, they see people who have been through difficult times. They can listen to the stuff that's gone on and signpost you, increasingly to these group type settings it seems locally to me in the urban North West. Or NHS counselling, for which the wait is falling. But if we label ourselves as different, and want 'different' help, then I guess that we continue to feel on the outside.

AndJan - how is your husband now? Is he with you? If not then rather than what I might suggest below, then bereavement groups are probably familiar with the intensive care days and weeks before some people die - but if he is alive I had a couple of thoughts.

Have you tried the MIND website, as the local groups are run by service users themselves and have many types of classes or self help? Or any sort of local relaxation/ yoga type class? Several local churches/ community centres run these things near me, but my GP wouldn't know about any of them necessarily, and I have had to look and ask around. And if you were flat-out refused a request for referral for NHS counselling, then I would go and see a different GP. What you say about "whilst staying strong for everyone..." sounds like the sort of thinking they would be able to help you with.