Hi community, my brother Michael is in icu and has severe brain damage however when I visit sometimes he's incredibly sharp and the brother I know and other times he is so distant.
He has had a tracheotomy and is on a ventilator.
I have read a lot of testimonials from icu patients talking about hallucinations, not being able to remember or piece together parts of the story from icu and just being frustrated and depressed because they couldn't talk or move or anything.
I visit my brother and want to get there for him.
guess my question to anyone who can relate is how best can I talk to him?
Should I ask him if he is experiencing and probls, is he afraid about family or friends etc.
I want to be able to connect with him to keep hid spirits up but want to understand from those who have been in the situation how to do this.
What would you have found useful from a brother/sister/parent etc?
Thank you
Adam
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AJMforMichael
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My guess is, that because you are asking the question, you already know the answer!
So do what you feel is right for both you and him. Don’t forget that you too are suffering trauma and need to look after yourself.
I was in ICU for nearly 2 months, the delirium/ hallucinations meant that I was living in another world too difficult to explain know. When I was lucid people would be unable to convince me that I was not in my own world
So I would say just talk to him like normal don’t be shocked by any reaction no matter what and if he is rude to you or tells you to go away he doesn’t mean it.
My family brought in photos of the family including grand dogs and cats and I was expected to know who they were - well I didn’t but the nurses started asking me questions about who they were and that helped
I got lucky today as I seemed to connect really well with him today.
I told him what had happened to him over the past 6 weeks and he really understood.
We chatted about how everyone was trying to help him in ICU, and I reassured him that everyone was fine at home, that he need not worry about anything, just himself and getting better.
I guess what I'm trying to really understand is what should I expect?
You've given me lots when you say he might be rude etc. That was yesterday's experience.
1). How sore is he lying in that bed?
Can I do anything to help?
2). How frustrated is he to not be able to talk or move?
Can anything help this other than an emergency lip reading course?
3). How uncomfortable is the tracheotomy tube in his neck?
Can I do anything to help here?
Now I'm aware of some potential problems and experiences he is going to have I can see how frustrating it must be for him to hear all the icu noises and not know what they are. He will be hearing the nurses do their checks but because they are so routine for them they do not explain anything to him which probably scares him.
What other things can I anticipate and try to help explain to him to take away his fears I guess is what I'm searching for.
With the delirium / hallucinations would anything have helped you see the truth or are the drugs too strong?
1. My husband doesn't remember being sore lying in bed but he hated being rolled/turned although everyone is different. You could possibly ask if there are any physio activities you can do with him while you are visiting.
2. My husband was extremely frustrated at not being able to talk or move. I looked into lip reading courses but they were all very long so not possible to do them. One nurse told me that stepping back rather than being close helps with lip reading but your abilities will improve with time. We also had a letter/word chart that I/staff would point at and my husband would nod when we got to the right letter/word (this was really frustrating for him though so I didn't use it too much). Once mobility in his hand improved, he was able to point to the chart.
3. My husband doesn't remember anything about his tracheostomy tube apart from having a really hot neck where he had a padded bit at the back to keep it all in place!
I always just tried to chat with him about memories and day to day stuff. Sometimes I would recap some of the things that had or were happening to him if I thought he was feeling a bit confused or worried about things. I would always remind him how well he was doing and how far he had come.
I am sure that you just being there will be helping lots x
1 pain should be managed if you think he is telling you he is in pain then speak to the doctors. He may have bed sores on his heals and bum. These will be treated by turning and dressing as appropriate a gain just ask.
2 Very frustrated, angry etc I am right handed and was very weak on that side and couldn’t lift a pen. So they got me writing with my left the only problem I wrote very clearly in my own language (back to front , and wrong order of words etc) which I fully understood but nobody else did I couldn’t understand why. They did try one of these picture boards but for me that was just as bad.. when I was able they fitted a voice box to my tracks that was a godsend but it was tiring and taken away from me. When it was too much.
Lip reading is just as difficult. (A group of us are working with Belfast University to develop a lip reading App)
3. The trachy is great no probs.
ICU noise are another thing and mean different things to other people but in one way or another they bring even more reality to the hallucinations.
I think what needs to be remembered is that my reality was logical, real, totally believable and was not up for debate
That reality still exists it’s just part of my life know and at some stage I will write down those episodes. Don’t tell me they weren’t real!!!!
Been there got the scars.How frustrating was it? I was crawling up the walls! Or beating my head on them. If I could have, I would . If I could have, I would have SCREAMED, shouted, sworn, thrown things... On a scale of 0 to 10, at least 20. Hope I am making myself clear here.
Occasionally I managed to spell out messages by a nurse reciting the alphabet or running a pen along ABCDE cwritten out, I would have loved:
Someone patient enough to do it for longer.
A qwerty keyboard with space bar backspace and return keys.
Or at least, one written out to point to.
Having double vision made it difficult because I saw two pens pointing at
A BACBDCEDFE etc
It helped when someone wrote out what I spelled out where I could see it, it’s easy to lose your place in long words.
People who gave me chance to clarify if they didn’t understand would’ve been a big improvement, rather that those who gave up and walked away.
Hi AdamI went through a similar time when my brother was in ICU so I am thinking of you as I know how hard this is for your brother and also for you. Your presence will be reassuring to your brother and talk to him as you would normally. He might not be able to communicate all the time, he may be tired or suffering effects from the sedation or frustrated. You can be an advocate for your brother to communicate with the medical staff on his behalf when he can’t to help him and to make sure his care is what you would want for yourself. You are clearly very caring and so I am sure you will be doing everything you can to help. I wish your brother a good recovery.
Hi Adam, When I came round from my coma I, after a while, asked for bits of paper and pen to communicate, which the nurses provided. I also asked for some "light reading" material to be brought in, nothing too heavy or challenging.
Sometimes though, I actually did not want to communicate with my family at times, so don't be surprised or shocked should this happen.
At times the patient just wants to dwell in their semi-twilight zone trying to compute and make sense of everything that has gone on.
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