The long ICU wait : My wife always said that an... - ICUsteps


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The long ICU wait


My wife always said that an hour waiting outside ICU was like a day anywhere else, she dreaded being there and she dreaded not being there.

The emotional rollercoaster of ICU drains everyone of energy, keeping a vigil waiting expectantly for something to happen is awful whether you are outside the ward, outside the hospital, sitting at a bedside or sitting at home, fretting.

My wife said she waited at my bed because although she wanted to, it was also because she was terrified that something would happen & I would take a turn for the worse or die when she wasn’t around.

J said she couldn’t make sensible decisions at first - she was embroiled in the awful soap opera of what was going on. She got to a point, in fact all my family got to a point were they had to take breaks - hospital food isn’t all its cracked up to be either.

She also realised she needed to take exercise, it gave her time to work out her feelings and raise much needed endorphins.

She struggled with people’s optimism - she found she had to have realistic outlook - neither ridiculously optimistic or unduly pessimistic - people meant well when they said “He will be fine, I know it “ but that didn’t really help her with her emotions - in fact it made it worse - she wanted to ask them since when were they an ICU expert? It was a rollercoaster ride, one minute optimism filled the room only to be sucked out as soon as the consultant did their daily summing up.

I was often brighter in the morning and would dip at night - so my family started to anticipate the early hours call saying they should come and say their goodbyes, anxiety and sleeplessness took their toll.

She started to ask very specific staff about my wellbeing - certain staff had a poor sense of emotional intelligence whilst others were brilliant - ask who you are talking to if you phone in & find them sympathetic & approachable.

Controlling the barrage of phone calls and messages was a task - a good family friend took on this job - disseminating the daily update of information about me to who needed to know, my family found this exhausting. People would turn up at the door and expect a full disclosure without considering it’s impact.

I know that many relatives will not have the luxury of talking face to face with medical staff or seeing their loved one at this time. You may have been spared from seeing things that you will never be able to unsee. My wife is traumatised, 4yrs on, by the first time I was proned for instance, although there are numerous other occasions.

This forum is a brilliant forum - but there is a network of groups out there - we run exercise & yoga groups for critical care patients and their loved ones. We have a general drop-in meeting & relatives drop-in meeting every week. If you are looking for answers or just wish to aid your own rehab, wellbeing - why not try us out. Our sessions are free and funded by ourselves. Free doesn’t always mean second rate.

9 Replies

This is a perfect summary and accurately reflects my experience. Like your wife I found it visiting ICU an exhausting rollercoaster. I couldn’t eat or sleep not just me all my family were the same. Visiting iCU traumatised me too. Equally I am forever in debt to the NHS and have given blood ever since and fund raised for the hospital that treated my family member.

I think that while it is very difficult for families not to see their loved ones it can also shield them from some of the most distressing sights that did traumatise me and ones that I have to put to the back of my mind. You do Learn to seek out the medical staff with the emotional intelligence so they can update you. Other staff literally brought us to our knees with the outcomes bluntly stated with no empathy for the impact of those words. I recommend the book by a medical critical care dr who experienced ICU as a patient and now works on communicating the need for empathy with medical professionals.its called In Shock by Dr Rana Awdish.

We are eternally grateful for the support we received in the care of my family member who was in ICU and CCU for over 2 months and I visited daily. Being able to visit was to ensure the best care and to be the voice that my family member didn’t have.

Thats a bit worrying about not being able to make sensible decisions. My power of attorney is now in place :-]

It is really exhausting for the relatives and even worse when they turn up and can't go in because of some procedure going on.

Ha ha ha - J now has power of attorney over me ( & vice versa) - part of the issue was her being unable to access funds & pay certain bills whilst I was in a coma - whilst it wasn’t her major concern - this financial stress added to the heady soup of crap she was enduring.

Yes but S has health as well as finance😷🤐 . Its unbelievable that when you ask a company how much do we owe they wont tell you.

Yes - We have done both - it seemed sensible

Thank you for writing this. This is exactly what I am currently going through and it is reassuring to hear that it's not just me that feels like this and that other people are encountering the same problems that I am.

Copse77 in reply to LeopardGecko

I am sorry to hear you are going through this.Try to remain hopeful. There are so many stories of people who fought back against incredible odds. If there is anything I can help you with in terms of information please ask. I found keeping a timeline helps so on bad days you can look back on good days and keep positive. Wishing you all the best for your loved ones recovery.

LeopardGecko in reply to Copse77

Thank you. I feel that we are finally starting to see the light at the end of the tunnel. At the moment I'm struggling a little with inconsistencies of the staff some have high expectations of him and manage to gently push him on and others seem to do everything for him. I am now talking with the nurse in charge of rehab so I'm hoping that we can manage more consistency to help my husband to progress further.

Copse77 in reply to LeopardGecko

It sounds very positive. Good you are in communication with the nurse in charge of rehab.

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