How do we help our relative in the ICU?
August 2, 2020 2:06 PM Subscribe
My father in law went through severe septic shock. He’s been in the ICU for 12 days on a ventilator, in critical condition, but is awake and relatively alert for part of the day. I am still hopeful he pulls through, and have been reading about the PTSD that accompanies the recovery process. Is there anything we can do for him now that may help his future recovery? I am mainly looking for thoughts from people who have experienced extended ICU stays for themselves or their loved ones.
Because of Covid complications, nobody can go and see him in the hospital. My mother in law sees him everyday. My husband has flown down there, but he is in mandatory quarantine for the next several days so he can’t actually visit him yet. My father in law hasn’t yet been told that he’s arrived.
My mother in law can convey our messages and even show him photos and videos.
I don’t know if physical objects or space rearrangement is possible.
Are there any little things that we can do to make his stay even marginally less traumatic, within these constraints?
Because of Covid complications, nobody can go and see him in the hospital. My mother in law sees him everyday. My husband has flown down there, but he is in mandatory quarantine for the next several days so he can’t actually visit him yet. My father in law hasn’t yet been told that he’s arrived.
My mother in law can convey our messages and even show him photos and videos.
I don’t know if physical objects or space rearrangement is possible.
Are there any little things that we can do to make his stay even marginally less traumatic, within these constraints?
Not really, not now. That's kind of the hell of trauma, when it's the kind of trauma that nobody has the power to stop: you have to focus all your energy on surviving, and recovery and processing have to wait for the most part.
But a small-big thing you can do, at least in moments of lucidity, is begin cultivating a culture of acknowledging it and talking about it. One of the big horrors of medical trauma is a lack of bodily autonomy - people touch you without asking or waiting for consent, without explanation or warning, without confirming whether or not it will hurt; also your body does stuff you did not ask or want it to do. I've definitely been in hospitals with family where the nurses were well-informed in that, and really good about kinda creating some kind of consent or at least warning dialogue (I mean, sometimes consent just doesn't get to be a thing, something needs to be done). The more your husband and MIL can normalize saying some of that quiet stuff out loud, either acknowledging to him that things are intrusive and upsetting and painful or trying to narrate or explain what's going on when things are happening, the better chance of it being a longer-term habit even after the crisis is passing.
This is a decent paper that summarizes the sources of trauma and offers some best practices, to some extent, or at least some vocabulary for further understanding.
Something we did do in the last two situations where someone was in the hospital and we couldn't be there 24/7 was tape a note to the nightstand (or whatever, somewhere not in the way where a nurse knows to look for it) with all the important phone numbers at the top and then a list of facts and statuses like:
- Jane (wife) has gone home to have dinner and sleep, she will be back at 9am tomorrow
- Lyn (daughter) will probably be coming to visit on Saturday (travel plans pending)
- Friend1, Sibling1, Boss1, Grandchildren are kept updated on condition and send their love
- Work, Church, Other Responsibility (stuff the patient might worry over repeatedly) knows what's going on and are taking over, it's okay
- The dog is fine, misses him, but is doing okay.
The point of this was mostly to make them less fretful on a moment-to-moment basis, but the nurses said it helped to be able to respond with something soothing. My dad was not terribly lucid, was overwhelmed with anxiety, and his love language was acts of service so he would fret constantly about a minor car problem my mom had the second day he was in the hospital, and just literally putting on the note that the car was fixed* so that someone who had no idea what he was talking about could reassure him helped.
*I had to tell my mother to lie about the damn car and stop re-telling him it was still broken and she was driving his car, and it may have been an unpleasant shock (she realized in that moment that she needed to lie about a lot of things, to keep him comfortable rather than informed) but it changed her operating procedures in ways that were necessary, and I just recently shared this story with a friend whose mom is in the same shape as my dad and it also shocked him and made him stop fighting with her about stuff she was hallucinating. (And tell your husband: it's especially hard with a parent, who can set us off in ways that nobody else would, especially when they are combative or upset. Parents live as these giant monuments in our head, so when they accuse you of something you didn't do, you go from 0 to NUH-UH so fast you forget to stop and take heed of the obvious cognitive issue.)
So to that end, the biggest help you can probably be right now is to your MIL who is completely lucid and also being horribly traumatized and probably also in the habit of relating to her husband as a competent well-person partner and not someone who is very, very sick. She is probably going to need to process a LOT, and sometimes maybe really heavy shit that may be hard for your husband to be the co-processor, and if she has a friend or friends who are close enough to her for that this would be the time to loop them in to the Primary Support Circle (only to whatever extent they are willing and able, of course, but don't be afraid to ask).
A therapist can be somewhat helpful to her at this stage, both as an impartial sounding-board but also as an advisor, to help your MIL with techniques for dealing with harried medical personnel, helping keep your FIL comfortable, accessing additional resources.
I'm sorry, this is awful and stressful. Picking up most of the pieces is a job for a good ways down the road at this point, right now you just have to get through it.
posted by Lyn Never at 3:03 PM on August 2, 2020 [19 favorites]
But a small-big thing you can do, at least in moments of lucidity, is begin cultivating a culture of acknowledging it and talking about it. One of the big horrors of medical trauma is a lack of bodily autonomy - people touch you without asking or waiting for consent, without explanation or warning, without confirming whether or not it will hurt; also your body does stuff you did not ask or want it to do. I've definitely been in hospitals with family where the nurses were well-informed in that, and really good about kinda creating some kind of consent or at least warning dialogue (I mean, sometimes consent just doesn't get to be a thing, something needs to be done). The more your husband and MIL can normalize saying some of that quiet stuff out loud, either acknowledging to him that things are intrusive and upsetting and painful or trying to narrate or explain what's going on when things are happening, the better chance of it being a longer-term habit even after the crisis is passing.
This is a decent paper that summarizes the sources of trauma and offers some best practices, to some extent, or at least some vocabulary for further understanding.
Something we did do in the last two situations where someone was in the hospital and we couldn't be there 24/7 was tape a note to the nightstand (or whatever, somewhere not in the way where a nurse knows to look for it) with all the important phone numbers at the top and then a list of facts and statuses like:
- Jane (wife) has gone home to have dinner and sleep, she will be back at 9am tomorrow
- Lyn (daughter) will probably be coming to visit on Saturday (travel plans pending)
- Friend1, Sibling1, Boss1, Grandchildren are kept updated on condition and send their love
- Work, Church, Other Responsibility (stuff the patient might worry over repeatedly) knows what's going on and are taking over, it's okay
- The dog is fine, misses him, but is doing okay.
The point of this was mostly to make them less fretful on a moment-to-moment basis, but the nurses said it helped to be able to respond with something soothing. My dad was not terribly lucid, was overwhelmed with anxiety, and his love language was acts of service so he would fret constantly about a minor car problem my mom had the second day he was in the hospital, and just literally putting on the note that the car was fixed* so that someone who had no idea what he was talking about could reassure him helped.
*I had to tell my mother to lie about the damn car and stop re-telling him it was still broken and she was driving his car, and it may have been an unpleasant shock (she realized in that moment that she needed to lie about a lot of things, to keep him comfortable rather than informed) but it changed her operating procedures in ways that were necessary, and I just recently shared this story with a friend whose mom is in the same shape as my dad and it also shocked him and made him stop fighting with her about stuff she was hallucinating. (And tell your husband: it's especially hard with a parent, who can set us off in ways that nobody else would, especially when they are combative or upset. Parents live as these giant monuments in our head, so when they accuse you of something you didn't do, you go from 0 to NUH-UH so fast you forget to stop and take heed of the obvious cognitive issue.)
So to that end, the biggest help you can probably be right now is to your MIL who is completely lucid and also being horribly traumatized and probably also in the habit of relating to her husband as a competent well-person partner and not someone who is very, very sick. She is probably going to need to process a LOT, and sometimes maybe really heavy shit that may be hard for your husband to be the co-processor, and if she has a friend or friends who are close enough to her for that this would be the time to loop them in to the Primary Support Circle (only to whatever extent they are willing and able, of course, but don't be afraid to ask).
A therapist can be somewhat helpful to her at this stage, both as an impartial sounding-board but also as an advisor, to help your MIL with techniques for dealing with harried medical personnel, helping keep your FIL comfortable, accessing additional resources.
I'm sorry, this is awful and stressful. Picking up most of the pieces is a job for a good ways down the road at this point, right now you just have to get through it.
posted by Lyn Never at 3:03 PM on August 2, 2020 [19 favorites]
A pneumonia put me in isolation in the ICU on a vent.
I was there for about 2 weeks.
So : you can't speak with all the tubes.
A notebook with Sharpie is communication.
When the the tubes are pulled it looks like something from Alien.
They tell you it'll take awhile before you can speak.
When you can you sound like Brando in the Godfather movies.
Having a glass of juice was absolutely spectacular.
I know what the astronauts feel like.
After being bedridden that long ,you need help to get into a wheelchair.
While in the ICU you are undergoing various procedures , usually using Milk of Amnesia (Propofol) as the anaesthetic.
This means you will lose some memories and may not remember certain hours , days.
Out of ICU means you are just getting started on recovery.
Various therapists , specialists
Into a regular ward on oxygen.
Go from wheelchair to walker.
Go to walker without oxygen.
Get out , go home.
Takes a couple of weeks before I can walk 400 yards.
Major accomplishment, almost in tears.
It's not just the ICU. It's a whole series of struggles , of small victories.
Of being able to have a drink. To have solid food . To have a shower.
To be able to walk without assistance.
This is the difficult stage. When you are out of ICU and recovering.
That is where you can help best.
posted by yyz at 4:05 PM on August 2, 2020 [20 favorites]
I was there for about 2 weeks.
So : you can't speak with all the tubes.
A notebook with Sharpie is communication.
When the the tubes are pulled it looks like something from Alien.
They tell you it'll take awhile before you can speak.
When you can you sound like Brando in the Godfather movies.
Having a glass of juice was absolutely spectacular.
I know what the astronauts feel like.
After being bedridden that long ,you need help to get into a wheelchair.
While in the ICU you are undergoing various procedures , usually using Milk of Amnesia (Propofol) as the anaesthetic.
This means you will lose some memories and may not remember certain hours , days.
Out of ICU means you are just getting started on recovery.
Various therapists , specialists
Into a regular ward on oxygen.
Go from wheelchair to walker.
Go to walker without oxygen.
Get out , go home.
Takes a couple of weeks before I can walk 400 yards.
Major accomplishment, almost in tears.
It's not just the ICU. It's a whole series of struggles , of small victories.
Of being able to have a drink. To have solid food . To have a shower.
To be able to walk without assistance.
This is the difficult stage. When you are out of ICU and recovering.
That is where you can help best.
posted by yyz at 4:05 PM on August 2, 2020 [20 favorites]
The UK Sepsis Trust is doing a lot of work in this area. I would start with their Recovery after Critical Care booklet and poke around at their other resources after.
posted by saucysault at 8:39 AM on August 3, 2020
posted by saucysault at 8:39 AM on August 3, 2020
Three years ago, I spent two weeks in the ICU with septic shock and a total of four weeks in the hospital.
When your FIL gets out and is home/recovering, let him know you're thinking about him, even from afar. For me, I had a constant stream of texts, cards, etc while in the hospital - filtered to me as I was lucid enough - but that pretty much stopped when I came home and was ready to start processing. I was very thankful for the friends who did check in regularly just to listen to the little victories (like yyz says - I made it up the stairs without stopping, I walked a block, I ate solid food...) and to let me start talking about the bigger, scarier aspects of the whole situation.
When I was in the ICU, I was pretty out of it, and my room was tiny - no space whatever for personal effects. Once I got into a regular room, I was thankful for my own toiletries (toothpaste that tasted familiar, deodorant that smelled like me, lotion for the dry air) and a notebook to write down what all the different doctors told me.
And check in with your MIL now. Ask how SHE'S doing, whether she's eating, going home to shower, etc. She's going through a lot right now. I am very glad my parents and in-laws took care of my husband - bringing him food, sending him home occasionally, etc. His best friend took him out for a beer at one point, and he said it was such a relief. COVID may make some of the hands-on stuff hard, but ask local family (or your husband, if it's within quarantine) if they can make sure she's getting regular meals, someone to help with laundry, housecleaning, walking the dog, whatever.
posted by writermcwriterson at 10:30 AM on August 3, 2020 [3 favorites]
When your FIL gets out and is home/recovering, let him know you're thinking about him, even from afar. For me, I had a constant stream of texts, cards, etc while in the hospital - filtered to me as I was lucid enough - but that pretty much stopped when I came home and was ready to start processing. I was very thankful for the friends who did check in regularly just to listen to the little victories (like yyz says - I made it up the stairs without stopping, I walked a block, I ate solid food...) and to let me start talking about the bigger, scarier aspects of the whole situation.
When I was in the ICU, I was pretty out of it, and my room was tiny - no space whatever for personal effects. Once I got into a regular room, I was thankful for my own toiletries (toothpaste that tasted familiar, deodorant that smelled like me, lotion for the dry air) and a notebook to write down what all the different doctors told me.
And check in with your MIL now. Ask how SHE'S doing, whether she's eating, going home to shower, etc. She's going through a lot right now. I am very glad my parents and in-laws took care of my husband - bringing him food, sending him home occasionally, etc. His best friend took him out for a beer at one point, and he said it was such a relief. COVID may make some of the hands-on stuff hard, but ask local family (or your husband, if it's within quarantine) if they can make sure she's getting regular meals, someone to help with laundry, housecleaning, walking the dog, whatever.
posted by writermcwriterson at 10:30 AM on August 3, 2020 [3 favorites]
Get him a handheld video game console and some really immersive games. Getting sucked into a good video game is like time traveling to the future because you barely notice what's going on with your body or surroundings. I've done this when seriously ill or recovering from surgery and it was so nice.
posted by Jacqueline at 9:04 PM on August 3, 2020
posted by Jacqueline at 9:04 PM on August 3, 2020
If you can talk to him on the phone (even if all he can do is listen) or send recorded voice messages, I would do that. I was in the ICU with pneumonia and sepsis a few years ago and don't remember any of the time while I was sedated and intubated, but was so disoriented when I was finally fully awake that it took a full day to fade. It was a tremendously helpful coincidence that a friend called to check on me when I was awake and my nurse suggested I try to at least say hello instead of passing on a message. I still credit that phone call with beginning the process of re-orienting me. (The nurses and other ICU staff were amazing...but they weren't familiar.)
posted by camyram at 6:30 AM on August 5, 2020
posted by camyram at 6:30 AM on August 5, 2020
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posted by fingersandtoes at 3:02 PM on August 2, 2020 [2 favorites]