In hospital *with* PTSD but not *for* PTSD
January 24, 2021 3:04 PM
I’m looking for advice and resources about being in hospital (in this case, for a planned surgical admission) with PTSD. This is basically impossible to google, because all l get is information about hospital inpatient treatment *for* PTSD, or people developing PTSD after a traumatic hospitalisation.
I’m more looking for information about how to manage PTSD symptoms while in hospital - an environment where lots of potentially triggering things happen (for me, things like other people screaming, being touched unexpectedly, generally feeling trapped, among other things) and where you have very little control over your environment or routine.
This must be a thing that others have gone through and written about. Or maybe someone here has stories to share?
(Assume the PTSD is being competently treated but probably isn’t going to completely go away. I disclosed it at my pre-admission appointment but I’m not naive enough to think that the average recovery ward nurse is going to have a deep understanding of the specifics of trauma-informed care).
I’m more looking for information about how to manage PTSD symptoms while in hospital - an environment where lots of potentially triggering things happen (for me, things like other people screaming, being touched unexpectedly, generally feeling trapped, among other things) and where you have very little control over your environment or routine.
This must be a thing that others have gone through and written about. Or maybe someone here has stories to share?
(Assume the PTSD is being competently treated but probably isn’t going to completely go away. I disclosed it at my pre-admission appointment but I’m not naive enough to think that the average recovery ward nurse is going to have a deep understanding of the specifics of trauma-informed care).
Make sure the day of surgery, your pre appointment issues are noted and will be followed. They threw mine completely out the window, for my last surgery.
posted by Oyéah at 3:25 PM on January 24, 2021
posted by Oyéah at 3:25 PM on January 24, 2021
I have CPTSD and gave birth in the hospital last year. Some of the specific strategies I used probably won't be applicable, but I did a couple things that may be helpful for you:
- I made sure that my primary care providers were well aware of the CPTSD, and relayed that info directly to the charge nurse when I was admitted. I was adamant that no one touched me without explicit permission from me. I asked every nurse on a new shift if they had read my chart, they all had and it was a relief not to have to repeat all the details daily. Unfortunately all advocating we have to do is exhausting, but this is what I needed to feel safe during delivery.
- I had a whiteboard in my room that had useful info for the nurses (apparently this is a thing at many hospitals??). The do not touch note was written on my board, so even if they changed shifts while I was sleeping, it was right there and highly visible.
- Ear plugs/noise cancelling headphones were critical to me getting a good sleep when I was able to and helped block out the background noise
- Can someone come with you as a caregiver? (Precovid) My partner was there and on board with enforcing what I wanted when I was not coherent (late stages of labour). This made me feel safe knowing someone was there who had my back. Not sure how this works with covid restrictions in your area.
- Can you get a private or semi private room? That helped me alot being in a room by myself.
- (Precovid) I brought things that help keep me grounded (favourite blanket, small statue that means alot to me, worry rocks, warm socks, my own pjs, etc.). Basically anything that makes you feel comfortable or soothed helps with grounding and trying to keep things calm.
- Can you take a tour or virtual tour now? I was able to walk around the labour and delivery floor and get a sense of how things worked. It made me feel more comfortable.
- The feeling trapped is a bit trickier - I hate IVs (Sensory issues) but needed one during delivery. I asked them to put it in my left non dominant hand, and that worked much better than previous IVs in my elbow or dominant hand. That way the cord wasn't getting wrapped around whenever I used my right hand. YMMV on whether this is possible with your vein structure, but don't be afraid to push back on making sure your IV is in a comfortable spot. One nurse tried to tell me I couldn't have any IV anywhere but my right elbow, despite my midwife having successfully put in my other hand on several occasions. My midwife happy put it in on my left hand.
- If a nurse is making you uncomfortable, don't be afraid to ask for an alternative. The nurse I mentioned above also did not understand me refusing cervical checks until my midwife arrived and was pushy. My partner talked to the charge nurse and she got moved off caring for me.
Good luck!
posted by snowysoul at 3:42 PM on January 24, 2021
- I made sure that my primary care providers were well aware of the CPTSD, and relayed that info directly to the charge nurse when I was admitted. I was adamant that no one touched me without explicit permission from me. I asked every nurse on a new shift if they had read my chart, they all had and it was a relief not to have to repeat all the details daily. Unfortunately all advocating we have to do is exhausting, but this is what I needed to feel safe during delivery.
- I had a whiteboard in my room that had useful info for the nurses (apparently this is a thing at many hospitals??). The do not touch note was written on my board, so even if they changed shifts while I was sleeping, it was right there and highly visible.
- Ear plugs/noise cancelling headphones were critical to me getting a good sleep when I was able to and helped block out the background noise
- Can someone come with you as a caregiver? (Precovid) My partner was there and on board with enforcing what I wanted when I was not coherent (late stages of labour). This made me feel safe knowing someone was there who had my back. Not sure how this works with covid restrictions in your area.
- Can you get a private or semi private room? That helped me alot being in a room by myself.
- (Precovid) I brought things that help keep me grounded (favourite blanket, small statue that means alot to me, worry rocks, warm socks, my own pjs, etc.). Basically anything that makes you feel comfortable or soothed helps with grounding and trying to keep things calm.
- Can you take a tour or virtual tour now? I was able to walk around the labour and delivery floor and get a sense of how things worked. It made me feel more comfortable.
- The feeling trapped is a bit trickier - I hate IVs (Sensory issues) but needed one during delivery. I asked them to put it in my left non dominant hand, and that worked much better than previous IVs in my elbow or dominant hand. That way the cord wasn't getting wrapped around whenever I used my right hand. YMMV on whether this is possible with your vein structure, but don't be afraid to push back on making sure your IV is in a comfortable spot. One nurse tried to tell me I couldn't have any IV anywhere but my right elbow, despite my midwife having successfully put in my other hand on several occasions. My midwife happy put it in on my left hand.
- If a nurse is making you uncomfortable, don't be afraid to ask for an alternative. The nurse I mentioned above also did not understand me refusing cervical checks until my midwife arrived and was pushy. My partner talked to the charge nurse and she got moved off caring for me.
Good luck!
posted by snowysoul at 3:42 PM on January 24, 2021
Yeah, if there are things you really want, like to not be touched in certain ways, ask the nurses to write them on the whiteboard. (I've never been in a hospital where I heard people screaming, for what that's worth.)
In my hospitalization they woke me up every hour or so -- one person to check blood pressure, another to check catheter, etc. -- until I very strongly objected. If I were going in for a scheduled surgery I'd probably talk to the hospital ahead of time about how PTSD and sleep interrelate, and ask how to get the most possible contiguous sleep times.
Personally I'd also consider bringing a heavy blanket, a small lamp, some soothing music/meditation recordings.
posted by hungrytiger at 6:26 PM on January 24, 2021
In my hospitalization they woke me up every hour or so -- one person to check blood pressure, another to check catheter, etc. -- until I very strongly objected. If I were going in for a scheduled surgery I'd probably talk to the hospital ahead of time about how PTSD and sleep interrelate, and ask how to get the most possible contiguous sleep times.
Personally I'd also consider bringing a heavy blanket, a small lamp, some soothing music/meditation recordings.
posted by hungrytiger at 6:26 PM on January 24, 2021
Sometimes people have a really hard time recovering from anesthetic. Some of the drugs are dissociative etc. and can bring things up for trauma survivors. You can flag to your anesthesiologist that you’re concerned that you might experience distress in PACU. The anesthesiologist is responsible for you in PACU, and they’re running the show in surgery in a lot of ways.
Knowing what to expect may help you feel more in control. You can ask the intake nurse what to expect. You can raise your concerns with your intake nurse, who can potentially communicate your concerns to the nursing team.
It is good to communicate these things to your surgeon, as others have indicated. Unfortunately, my experience with surgeons is that it’s somewhat rare for them to have a communicative relationship with nursing, social work, etc. except about technical stuff related to surgery. They are exceptions; your surgeon may be one.
There is also a social worker on most hospital units, who can liaise with lots of moving parts of the system. They will understand that your mental health is connected to your physical health, and possibly be able to advocate for trauma informed practice in a way that the average post-surgical nurse may not be thinking of, as you have identified. They may be able to, for example, advocate for you not to share a room with someone loud.
Possibly a letter from a psychiatrist about how your condition could be exacerbated by xyz that could be affixed to your chart, although this could backfire in terms of stigma.
posted by unstrungharp at 8:37 PM on January 24, 2021
Knowing what to expect may help you feel more in control. You can ask the intake nurse what to expect. You can raise your concerns with your intake nurse, who can potentially communicate your concerns to the nursing team.
It is good to communicate these things to your surgeon, as others have indicated. Unfortunately, my experience with surgeons is that it’s somewhat rare for them to have a communicative relationship with nursing, social work, etc. except about technical stuff related to surgery. They are exceptions; your surgeon may be one.
There is also a social worker on most hospital units, who can liaise with lots of moving parts of the system. They will understand that your mental health is connected to your physical health, and possibly be able to advocate for trauma informed practice in a way that the average post-surgical nurse may not be thinking of, as you have identified. They may be able to, for example, advocate for you not to share a room with someone loud.
Possibly a letter from a psychiatrist about how your condition could be exacerbated by xyz that could be affixed to your chart, although this could backfire in terms of stigma.
posted by unstrungharp at 8:37 PM on January 24, 2021
If you have a doctor who perscribes medication for you, I highly recommend before hand getting something for panic and making sure physicians are aware to give it to you if things deteriorate. In a pinch medication works if you can take it so just do.
I personally have severe disorientation/flashbacks on waking from anaesthia, and I warn people ahead of time that like no you do not understand I will start fighting for my life so let's have a plan to address this medically so things go okay.
Other things i do, be very explicit about boundaries , and ask questions to get staff talking too. Why are you here, what are you doing? Do you need to touch me? Etc.
It's really okay if you are triggered to ask for a break. If the medical staff are trying to do something and you cannot tolerate it, do ask.
Take something conforting and grounding for you. I have a little stuffed animal i love.
I also do some mantra stuff, like I'm in the hospital for xyz, I'm safe. And repeat it over and over and over as something to hold on to.
I have a tendency to disassociate so I try to communicate things in advance because in the moment I'm not good at it but this may not apply to you
posted by AlexiaSky at 8:58 PM on January 24, 2021
I personally have severe disorientation/flashbacks on waking from anaesthia, and I warn people ahead of time that like no you do not understand I will start fighting for my life so let's have a plan to address this medically so things go okay.
Other things i do, be very explicit about boundaries , and ask questions to get staff talking too. Why are you here, what are you doing? Do you need to touch me? Etc.
It's really okay if you are triggered to ask for a break. If the medical staff are trying to do something and you cannot tolerate it, do ask.
Take something conforting and grounding for you. I have a little stuffed animal i love.
I also do some mantra stuff, like I'm in the hospital for xyz, I'm safe. And repeat it over and over and over as something to hold on to.
I have a tendency to disassociate so I try to communicate things in advance because in the moment I'm not good at it but this may not apply to you
posted by AlexiaSky at 8:58 PM on January 24, 2021
I have a similar deal and was very concerned going into labor/delivery. Writing a birth plan really helped, specifically the "notes" part of it; it was basically a troubleshooting guide to my brain. Even if no one had read it, it gave me clear statements I could parrot instead of having to Actually Make Words Work while stressed.
A specific example: a common breathing exercise spins up a panic attack pretty much every time for me. My main nurse understood from the start, but later there was a complication and suddenly extra nurses swooped in to help. When they started coaching me in that specific exercise, I recited the appropriate line from my troubleshooting guide on autopilot, something like "(breathing exercise) makes me panic, but I can do (alternate breathing exercise.)" And they heard, and they respected my request, and everything turned out ok!
Advocating for yourself, especially when you're tired or scared or in pain, is HARD, but practicing sound bites can make it easier IMO. "Please tell me before you touch me," or even "I'm dealing with PTSD and this is hard for me; can take a moment / hear the plan again?" are completely reasonable requests!
To ease the recovery stay, I'd recommend packing earplugs or noise-cancelling headphones, an eye mask if you can tolerate it (bonus points if weighted!), extra socks, and something that smells comforting to you. Anything that can help you maximize your comfort and your chances of getting decent rest. My "comforting scent" preference is a cotton ball with a drop of peppermint oil in a tiny container that I can open & sniff as needed without the scent bothering others.
I hope your procedure and recovery go as smoothly as possible!
posted by Ann Telope at 9:07 PM on January 24, 2021
A specific example: a common breathing exercise spins up a panic attack pretty much every time for me. My main nurse understood from the start, but later there was a complication and suddenly extra nurses swooped in to help. When they started coaching me in that specific exercise, I recited the appropriate line from my troubleshooting guide on autopilot, something like "(breathing exercise) makes me panic, but I can do (alternate breathing exercise.)" And they heard, and they respected my request, and everything turned out ok!
Advocating for yourself, especially when you're tired or scared or in pain, is HARD, but practicing sound bites can make it easier IMO. "Please tell me before you touch me," or even "I'm dealing with PTSD and this is hard for me; can take a moment / hear the plan again?" are completely reasonable requests!
To ease the recovery stay, I'd recommend packing earplugs or noise-cancelling headphones, an eye mask if you can tolerate it (bonus points if weighted!), extra socks, and something that smells comforting to you. Anything that can help you maximize your comfort and your chances of getting decent rest. My "comforting scent" preference is a cotton ball with a drop of peppermint oil in a tiny container that I can open & sniff as needed without the scent bothering others.
I hope your procedure and recovery go as smoothly as possible!
posted by Ann Telope at 9:07 PM on January 24, 2021
Depending on how long you anticipate your stay, talk to your admitting doctor about how often you really need to have your vitals checked. Usually, it's every four hours after surgery (to make sure you're not running a temp or having issues with your blood pressure). This is something that might be negotiable after a period of time; if your doctor agrees, s/he can put direct orders in to change the frequency. Additionally, definitely ask that the RN gives you the thermometer so that you can put it under your tongue rather than having them hold it in front of your face.
The charge RN should be able to have it in the desk notes that you have PTSD and it will be passed along to each shift change (in addition to having it written on the whiteboard in your room). If you have an issue, request to see the RN supervisor or patient advocate. You can also ask the RN to keep your door closed and have a sign posted that the door is to remain shut and anyone that needs to come in has to stop at the RN desk first (blood work, dietary, housekeeping, etc.).
You will more than likely have a private room and your own bathroom (most hospitals have switched over from semi-privates at this point). But if that's not the case, ask if there's one available. Due to COVID, I would think that they are limiting shared areas as much as possible.
And, yes, as mentioned above, definitely bring up your PTSD with the anesthesiologist (they will come to talk to you in the pre-op area) and how it manifests. They will be able to be properly prepared in the post-anesthesia surgical unit. Best of luck to you.
posted by dancinglamb at 5:16 PM on January 25, 2021
The charge RN should be able to have it in the desk notes that you have PTSD and it will be passed along to each shift change (in addition to having it written on the whiteboard in your room). If you have an issue, request to see the RN supervisor or patient advocate. You can also ask the RN to keep your door closed and have a sign posted that the door is to remain shut and anyone that needs to come in has to stop at the RN desk first (blood work, dietary, housekeeping, etc.).
You will more than likely have a private room and your own bathroom (most hospitals have switched over from semi-privates at this point). But if that's not the case, ask if there's one available. Due to COVID, I would think that they are limiting shared areas as much as possible.
And, yes, as mentioned above, definitely bring up your PTSD with the anesthesiologist (they will come to talk to you in the pre-op area) and how it manifests. They will be able to be properly prepared in the post-anesthesia surgical unit. Best of luck to you.
posted by dancinglamb at 5:16 PM on January 25, 2021
I've been on this merry-go-round and the advice above is good. I think having a support person is the single most helpful thing. Having done a hospital birth with a doula, if I had to have surgery without a support person I would literally call doulas in my town until I found a doula willing to provide non-birth medical support.
One thing that hasn't been mentioned - for me personally I found it really triggering when medical staff would enter the room without knocking to warn me and then leave the door open while working with me. Argh how do you expect me to talk to you when anyone walking by could see what's going on?!?! Or then they leave and the door is wide open?!?! So I asked to go in my chart for people to knock and close the door. I still had to remind them many times about this, but I found that having a small specific thing like that to focus on helped my confidence, and the practice helped me advocate for myself in other ways. "Can you please knock before entering and close the door for privacy?"
I'll also note that with PTSD it can be easy to dissociate, but it helps so much to tune in and pay attention when interacting with medical staff. I've had multiple times when there would have been an error - wrong medication, tried to give me medication when it was supposed to be stopped - that only got fixed because I pushed. I've literally had to fight with a nurse, like
Nurse: It's time for your next dose of medication.
Me: That's confusing because the doctor told me she wanted the dose earlier today to be my last.
Nurse: That's not what her orders say.
Me: But it's what she told me.
Nurse: That's not what the orders say.
Me: It seems like a problem that the orders don't match what she told me.
[Back and forth like this for a while.]
Nurse, as if threatening to send me to jail: Well do you want me to...call the doctor?
Me: Yes? Do that.
posted by medusa at 7:50 PM on January 25, 2021
One thing that hasn't been mentioned - for me personally I found it really triggering when medical staff would enter the room without knocking to warn me and then leave the door open while working with me. Argh how do you expect me to talk to you when anyone walking by could see what's going on?!?! Or then they leave and the door is wide open?!?! So I asked to go in my chart for people to knock and close the door. I still had to remind them many times about this, but I found that having a small specific thing like that to focus on helped my confidence, and the practice helped me advocate for myself in other ways. "Can you please knock before entering and close the door for privacy?"
I'll also note that with PTSD it can be easy to dissociate, but it helps so much to tune in and pay attention when interacting with medical staff. I've had multiple times when there would have been an error - wrong medication, tried to give me medication when it was supposed to be stopped - that only got fixed because I pushed. I've literally had to fight with a nurse, like
Nurse: It's time for your next dose of medication.
Me: That's confusing because the doctor told me she wanted the dose earlier today to be my last.
Nurse: That's not what her orders say.
Me: But it's what she told me.
Nurse: That's not what the orders say.
Me: It seems like a problem that the orders don't match what she told me.
[Back and forth like this for a while.]
Nurse, as if threatening to send me to jail: Well do you want me to...call the doctor?
Me: Yes? Do that.
posted by medusa at 7:50 PM on January 25, 2021
Also a standard bit of advice for birth is to bring a plate of cookies for the nurses. If I were in the hospital again I would do that, with a note that says "Being in the hospital is hard for me because of my PTSD. So I want to thank you in advance for your time and care!" This might help the nurses mentally frame you as "that sweet person with PTSD in room 4."
posted by medusa at 7:54 PM on January 25, 2021
posted by medusa at 7:54 PM on January 25, 2021
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posted by PhoBWanKenobi at 3:05 PM on January 24, 2021