Episode 132: The Power of ICU Diaries to Treat Post-ICU PTSD

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Post-ICU PTSD is a life altering and life-threatening condition. ICU diaries have shown promising benefits to helping survivors navigate the trauma they carry with them from the ICU and especially delirium. David Richards shares with us his journey during and after the ICU and how his ICU diary has been a key part of his post-ICU survival.

Episode Transcription

Kali Dayton 0:05
Post Traumatic Stress Disorder is a life altering and even life ending condition. It can lead to disability and decreased quality of life. Please listen to episodes 50 through 52. To hear from ICU survivors about how post ICU PTSD impacts their lives. For PTSD in general from any cause. There is a 46% increase in mortality.

Preventing PTSD should be a high priority in the ICU. As we work so hard to save lives in the moment, we must also do our best to ensure that we save them for the long run as well. Repeatedly I’ve been told that we give sedation to “prevent trauma”. But some studies actually show that sedation and the delirium it causes actually increased the risk of post ICU PTSD.

Real recall of the reality of the ICU may be protective against post ICU PTSD, yet, obviously, delirium is that 100% avoidable and any patient in the ICU is at risk of being traumatized. There are things that we can do for any patient in the ICU, and especially those at higher risk of PTSD, like those that have been sedated and or suffered delirium.

ICU diaries can be a powerful tool to help support survivors and treat post ICU PTSD. Studies evaluating efficacy have been conflicting. But hearing from survivors that have benefited from documentation of their journey has led me to be a big fan of ICU diaries. Check out the transcription and the fine citations supporting ICU diaries.

I was in the contact with you. Probably about three years ago when I first launched the podcast I have learned from you in our private interactions, discussions, I’ve used your videos.

Throughout my presentations, and I have learned so much from you. You’ve been a guiding star and helping me stay focused on the why throughout this podcast and this movement.

Your impact on the ICU community already is immeasurable. But you haven’t even been in an official episode yet. So this is long overdue. I’m really excited for this. Do you mind introducing yourself to us?

David Richards 3:23
Yeah, sure. Yes, I’ve done various bits and pieces for you videos, audio written bits, but yeah, I guess this is the big one.

But yes, my name is David Richards. I am originally from Vegas. It’s a small town called Pembroke. I’m from the west waders coast, which is most famous for being the birthplace of King Henry the sixth, the first of the two dynasties.

Now, I have to leave Wales for which in the late 1980s. I crossed over the border into it. Now most of my career has been in defense and intelligence. And by 2011 that I found myself in the county of Gloucestershire, which is in the southwest of England.

Now, at the time, I was a single parent to two school aged daughters aged 12 and 13. I had just become a father again as well that’s right to a baby boy is a different party. Ihad a fantastic job. A job I could see myself staying in until my retirement.

I became a national champion in my track and field, which is triple musters over 14. Now, I was also in really good health as well. But in 2009 I also became one of the early swine flu victims.

And why should never be the same again after that. In late November code progressed very similar found myself in ARDS crisis, I was admitted to the department of critical care at the hospital cost to ship lawyer and within hours.

I was placed into an induced coma and on the bench over the following days, despite being on maximum vent settings, placed in the prone position, I continued to deteriorate.

When they exhausted all methods of conventional treatments, I was transferred to the regional economic center which was over 100 miles away in Glenfield hospital, Leicester. Now at the time, that was only possible in the UK providing adults with spiritual with five beds.

I was fortunate and I hope the person before the occupy bed Don’t go to hell to come was fortunate and became a favorite of my time on ECMO.

Wasn’t that great? First week pass without incidents, but on about day seven tracheal stenosis. From then on, I was just beset by bleeding complications began to bleed out of groin cannula. I was receiving a number of transfusions.

And about day 14, I suffered a pneumothorax, chest tubes, but in each side. I bled out profusely from both of those small holes. But it bled on for a couple more days. But during the third week, the doctors decided that the blood loss was too much I had to come off they come to me they’re still in induced coma for another week monitoring me before they repatriate me to my lunch.

In the following days of that, I was woke from the coma. I emerged from four weeks of horrific and terrifying nightmares to enter a distorted reality of audible and visual hallucinations- ICU delirium.

And I remained there for two weeks. Now I’m fortunate, that six week period, like many I have a fragmented and delusional week of my time.

But I have an ICU diary, which I’m sure we’ll l talk about and that allowed me to create the timeline of events.

After that, I was discharged to the respiratory ward on the eighth floor of the same building. I had a horrific time there for about two months.

I was eventually discharged home.

This is the point where most people think the journey is over. You know the race is done if one thinks we go back to normal. But it’s not. It’s just the first stage of the next phase of your journey.

I was discharged home and I had a very prolonged slow and difficult I was over two years in physical rehabilitation most of the two and a half years. I around 15, 16 months in psychological recovery, counseling, CBT- cognitive behavioral therapy, EMDR Eye Movement Desensitization and Reprocessing.

And for my cognitive deficits, I was referred to the great team at my local hospital where again, about 15 months learning coping strategies for the memory loss, short term memory problems, focus, concentration- and these all running concurent.

The end of that, I’ve never regained the ability to walk unaided. I still have to walk with a cane. I was never able to return to work. And I found myself under various specialists pulmonology neurology, and even now today I remain under rheumatology, cardiology syncope services.

So yeah, it’s been a difficult 30 years.

Kali Dayton 10:35
And for me three years ago, having talked to some survivors, when you talked about the psychological recovery that you required. I was just shocked that having worked in the ICU at that point, I think about 10 years, I had no idea that trauma therapy was often really needed. And I think underutilized for our survivors.

And it didn’t really make sense until I got to really empathize, gotten deeper to what you really experience when you’re sedated. What did you experience while under sedation?

David Richards 11:20
Well, it certainly wasn’t peaceful sleep. Or having nice dreams. It was just horrific. Nightmares. Torment, you know, general mayhem. Some of the nightmares are so extreme that I never spoke about that. Even when I was in therapy. I’ve kept that to myself, because I am embarrassed and ashamed that my mind has such image.

One overriding nightmare that seemed to go on. I’ve mentioned it in the various pieces we’ve done. And that was my two daughters were kidnapped. Age 12 and 13. This nightmare seemed to go on and on. I will be traveling the UK, that continent in Russia, always get close to finding them again, and they’re gone. Then, this nightmare finished.

When after I was inside, I knew they were there. Went upstairs and there was a room full of them- women dressed as nurses. I said, “Great! They’ll be saved. I found them.”

Then it just took a turn for the worse. And turns out they were prostitutes- that’s why my daughter’s been kidnapped. And that’s where the nightmare ended. What happens next? I’d find myself awake in the ICU.

And I found myself surrounded by women in nurse’s uniforms.

These arenas, it’s obviously I’m terrified. I can’t communicate. I literally cannot lift a finger because I still have the effects of the paralytics. And the only communication I could do this blinking once for yes, twice for no.

I couldn’t sort of elaborate anything. I couldn’t get any question of course. And I just had this fear of my daughters because the nightmares carried forward.

Because the nightmares were more real to me than the world I was now awake in. And it was it was just torture being trapped in the body. But I just could not do anything.

Kali Dayton 14:09
I have a two year old right now that escapes. He runs down the road takes off. And it’s very stressful. But that’s real life. I can chase after him. I can grab him and see him.

Nonetheless, it’s stressful. I’m just trying to imagine as a parent, as a father, where you have so much unseen to protect to be saved your kids and you’re stuck in a bed in that reality. Surrounded by people that you think are the part of the conspiracy or part of the problem.

How do you how do you not go insane?

David Richards 14:47
It was awful. I mean, I think my daughter’s visited me on the third day waking from the coma. And it was only then I was relieved from that scenario.

Yeah, I remember seeing that coming through the ICU and doors. From where my bed was like to see well right down the corridor to the ICU entrance. And to just see them coming through the doors again. I’m here feeling a little bit funny talking about it now, because even though I know, it wasn’t really, I still have emotions attached to that memory.

There’s a perceived authenticity is a real memory. And I was just crying when they see them walking towards my bed. Having a piece of paper I was trying to hide my face from seeing me crying but, oh my god, it was such a sense of relief.

Kali Dayton 15:55
And you still couldn’t communicate it to them? You couldn’t tell them what was going on?

David Richards 16:00
No, by now I was mouthing words and hoping people could liquidity that’s very limited to this. It’s hard to get people to understand what you’re trying to say. And not only that paralytics the last part of my body where I lost that number feeling was my mouth. It affected how it all works.

Kali Dayton 16:33
Wow.

David Richards 16:35
Yeah. I had found progressive stages of communication. First of all, thinking once for “yes”, twice. for “no”. Second one, hoping people can lip read. So you know, it’s a number of days. I still can’t really get out my feelings.

But then the third stage, I’m presented with an alphabet. Just a sheet of paper, points, letters. Now that gets us quite laborious when you’re struggling to lift your arm point and spell words. That’s quite hard. That gets tiring very.

Kali Dayton 17:22
It kind of feels like torture in the moment.

David Richards 17:26
It is being a patient in the ICU is one of the most miserable and terrifying experiences no matter how good the care. Yeah, it’s horrible, horrible place to be. So yes, there was an alphabet board when I regained a little bit of dexterity, I could start writing. And lastly, I think the passy muir valve attached to the trach.

Yes, but going back to the writing. I still have every piece of paper I wrote. The first question I wrote, I had partially mouths as well as my writing.

This question was: “Where am I?”.

Second question, or wasn’t a question: “I’m frightened.”

This is all building up inside me for a matter of days now. I was frightened. I didn’t know who I didn’t know who to trust. Who was conspiring against me. I was having these dreadful delusions.

Kali Dayton 18:47
Yeah.

David Richards 18:50
It wasn’t a good time.

Kali Dayton 18:53
You mentioned impact of solitude. That had never crossed my mind before. Because in my mind, when a patient in the ICU, their privacy is invaded, they’re hardly ever really alone. As far as clinicians are in and out of the room, we don’t leave them you know, we really don’t give patients privacy.

But though you had some probably with you all the time, you felt isolated and alone. And then once you finally recognized that people are with you, you can’t communicate with them. How did that impact your trauma?

David Richards 19:34
Oh, hugely I’m just trapped inside my head. I’m just trapped with these thoughts, these images, these nightmares, and I don’t know what’s real or….Well, everything is real to me at that time.

And like I say, I still have emotions attached to all of these memories. Even though I’ve been through all the therapies, I’ve never been able to process it properly and let go. And I know there’s false memories, but they still have a pretty bad impact.

Kali Dayton 20:21
And I am so grateful for your vulnerability to talk about this…. to share it. I’m emotional, just hearing you. Trying to empathize, it’s hard. It’s hard to even just get a very outsider glimpse into what you’ve experienced what you still struggle with.

What do you wish you had had? In that moment of first waking up out of your coma?

David Richards 20:53
Well, it would have to be a means of communication. Now I know communication in the ICU has improved since my time.

A little bit I’m what I’m thinking about, particularly. Are the tablets, the “Vidatalk”.

Kali Dayton 21:19
Yes, I showed you Vidatalk. It’s not standardized yet. But what would have meant to you to have Vidatalk, especially when they’re coming out with eye gaze technology?

David Richards 21:29
Well, yes. And also, about two years ago, I watched the presentation of a UK equivalent. This for my ICU. It was developed by Addenbrooke’s Hospital, which is a big research and teaching hospital, I think, with links to Oxford University, Cambridge, Cambridge University.

And I find this fantastic. I’m not sure….. I wouldn’t be able to use immediately from waking from the coma because I couldn’t move my lips.

That would take about 24 hours or so before I start moving on my fingers. But having something when I think about that alphabet board, pointing out letters, and then as you get to the end of a sentence, you just can’t be wrong. So if you can’t get to the letter you want, you want the letter T when it comes to the letter G underneath.

Understand what you’re trying to say, and you just give up in frustration.

Kali Dayton 22:36
And the nurses feel guilty. The nurses don’t always have the time to sit there and do that and to try to keep track of what you’re pointing to.

It’s difficult for everybody, and it’s awkward, and it’s heartbreaking on both sides of the bed.

David Richards 22:50
Yeah, it’s such a slow process, but having the icon, you can just touch an icon of a sentence. It is so much easier But, yeah, obviously you need a little bit of dexterity to move stuff, which in my case would have taken a few days.

Kali Dayton 23:16
But this is why I’ve been pushing for I gaze technology to be incorporated. That’s what my daughter uses for communication like thinking and use. Are you in your situation? If you were able to follow the command of blinking for yes twice for know how well could you have use an eye gaze device if it was accessible to you? That’s something we need to be really pushing for.

David Richards 23:40
Yeah, I think my eyes would move. Problem was, I was scared. I didn’t trust any everyone around me was doing…. they had kidnapped my daughters. What were they going to do to me? I just had all these strange scenarios going on in my head.

Kali Dayton 24:05
So could you have been compliant with a new device new technology really understand what it was for? Really trust people to want to communicate with them? Those would be barriers.

David Richards 24:16
Yeah, I’d probably wait until a parent was there… somebody I felt I could trust. The problem is in the ICU because of the delusions, my reality was different to everybody else.

And I had this… I knew I had left my local ICU because I went to war in the north towards the north of England. I thought I’d gone back to my home country of Wales. I asked one of the ministers when I was able to communicate, ” Am I in Wales?”

I asked my daughter’s, “Did I go to hospital in Wales, though?” I asked my mother I thought she wants like to make sure you tell me the truth. She said, “No, you didn’t.” – And I couldn’t understand this. I knew I had been backed away.

And when people told me that didn’t align with my delusions, it just made me more suspicious. And intensified my paranoia.

So it’s tricky. There’s, there’s a part in my, one of my writings, and I might have, I think I’ve shown this to you before, with the senior nurses I was talking to, and I couldn’t remember who it was because of where it comes in the border. What we were talking about a sheet of paper.

And she said that I may experience hallucinations, nightmares. And my response to her was “Strange dreams already started.”

I mean… Could you tried to tell me I was safe? That’s what she told me- that I was safe. And that no harm would come to me. I became mistrustful.

I’ll tell you what it’s like. I mean, you’ve written testimonies, testimonies of other survivors, but I think if you were told now you’re in a spare room, you’re at the office in your house.

Or somebody who’s coming to see us but it’s under the shoulder and said, “Kali, you think you’re on a podcast talking to a man over in the UK. You’re not. It’s a hallucination. You’re imagining it.”

A little bit later, sibling, or your parents probably say, “Kali, you think you do the podcasts again? Don’t you? Not it’s all in your imagination.” — What would you think?

Kali Dayton 27:28
I wouldn’t believe them. And I’d be terrified or I would start questioning myself and be afraid of myself and everything would be unsure and I would be afraid to even leave this office because I didn’t know what’s real and what’s not.

David Richards 27:42
You wonder what…. what were they doing? What are they planning? Why are they saying this to me? What… clearly I’m doing this. Why don’t they see it?

You know, and that is what it is like. Certainly for me, and I don’t think my situation in the ICU was unique in that respect.

Kali Dayton 28:07
And then how long did it take you to really come back to reality and start to understand where were at and what had really happened?

David Richards 28:24
There’s no exact timeframe, looking back. I would have periods of lucidity. I think once I’d seen my daughter’s and my parents, I was more grounded then and aware of the hospital. Of course, I kept slipping back into delirium. But then I would have periods of lucidity back into delirium.

Kali Dayton 28:51
And your family was your grounding point?

David Richards 28:56
Yes, mostly, I’m only hesitating because I’ll just say… I did become suspicious when they didn’t agree to Wales, because I knew I had been there.

But in fact, in delirium I had gone back. That was my reality. So there was still a little bit of suspicion that maybe were in on the conspiracy as well.

Kali Dayton 29:25
What do you think about family restrictions and visitation hours in the ICU? Should there be open doors or closed doors to families in the ICU?

David Richards 29:40
Right, well, at the time, visitating was quiet strict in my local hospital. I think it was 1 or two visitors for one hour in the afternoon, and the the same again in the evening.

They were quite strict on the numbers you could have at the bedside. So my regular visitors, two daughters, my parents, that they would only allow two at the bedside. So I’d have maybe my mother and my eldest daughter at the bedside. A father, youngest daughter would have to go to later.

When halftime at past they’d switchover. That I found quiet harsh.The ICU was quite spacey. They weren’t tripping over each other. I think they could have on all four of them to be at the bedside.

But short time before the pandemic, they did open up to fuller visitation. And same on all the wards as well. Now, in the ICU, think, yes, I think I would have liked to open vistitation.

I couldn’t move, you know, I was flat on my back, I was unable to move at a very restricted field of view. So I think I could have tolerated. But on the respiratory watch, where there are six beds in one room, three down in the side of the wall, that I wouldn’t have liked it.

If there were times that they just needed to rest. And it’s very hard to get rest. But to think that visitors could be in and out of that space, any time of day, is to the person in the bed next to me the bed opposite, it would be very hard to get rest. So I think in the ICU, I’d like visitation, not so much on the ward.

Kali Dayton 32:06
That’s an important consideration in the States. Most medsurg floors even have private rooms. So that is if it’s open door policy, and you’re sharing a space with so many other patients, that very disruptive. And you have your own private space.

And you and your loved ones can navigate when you want them there how you want there. What do you want them what you want them to do? That’s a different scenario. That’s an important consideration.

David Richards 32:36
Yes, they lump them into rooms in the respiratory ward. I think about two to four, six. And one of the best things that happened to me during my entire experience was contracting norovirus towards the end of my hospital stay.

Because after I threw up for the second time, the doctor came in touch my brow asked how I felt. I said all for themselves. You’ve been sick twice. And she goes getting out here. So I ended up aside from for about the last week of my training in hospital. Now, prior to that, I don’t think in the three months or so, I have had one complete night’s sleep and possibly multiple.

But in when you’re in a bay with five other men, six beds as soon as the lights go, straight away, snoring party. People were laughing in their sleep, shouting in this sleep. Oh, it’s just, it’s just impossible.

I don’t know what used to get up about two or three in the morning. And I don’t know what you’re doing this voluminous echo call around the room. And it was him peeing into his pod.

Kali Dayton 34:17
You know, there’s all sorts of noises So moving into a side room. Oh my gosh, that was the best thing. Once that stopped throwing up obviously. So yeah.

I’ve never heard norovirus be blessed like that. So…. You have to be that extremely miserable to be glad to have the norovirus.

And so your family was key. That was in 2009, Correct? And so that was, I want to say a different era. Just in the history of critical care medicine. We were very restricted very heavy on sedatives during that time. The A2F bundle started to roll out and 2000 teens- around 2015, 2016. So it makes sense when you notice that the hospitals opened up visitation because we were trying to humanize the hospital, especially the ICU.

Now we’re kind of sliding back, we have slid back into that. Obviously COVID stopped all of that. And we’re having a really hard time recovering. So I think a lot of our ICUs are back to the early, the late 2000s, 2000, and teens, right?

We’re still kind of stuck. So it’s important to for us to recognize how your family helped you be grounded, maybe, in some ways, exacerbated some of those paranoia. But they did help you through that. And I really like the assignments that the ICU gave your family as far as your ICU diary.

The UK has been much more progressive with ICU diaries in the US. And so I’m excited to hear considering all that you experience the trauma that you bear, you’ve carried with you. What is an ICU diary? And how has it helped you during your recovery? Even what 13 years later?

David Richards 36:10
Oh, well, the diary.

And he’s David’s showing us on the camera. So when this is on YouTube or Spotify, you can see his diary. And what that looks like it’s a it’s like a binder there’s the clear sheets where you can put pages on there, there are pictures. There’s printed out writing there’s handwriting.

Your writing. Yep, that is that’s textbook delirium writing.

So yeah, that’s it covers the first 15 days by zero days, my hospitalization. Now that’s a nice round figure. It’s not intentional, it’s just day 50 happened to be January the 31st. Okay, ended of the month. Probably a good time to stop. Because at this point that was now on the respiratory ward. I have clarity of sort, I was emerged from the delirium.

Now, the diary was kept by my partner. I guess she was what you would call a diary chief. She kept diaries or some sort of psychological release for quite a time. So this became an extension of now the diary contains what I would call three elements.

That’s the daily updates, photographs, and my written messages. So those are the three main elements. And it’s funny to me as a therapeutic aid in my psychological recovery has been immeasurable.

And to this day, when I find myself slipping into the grip of depression, PTSD is creeping up and I found myself struggling to move forward. I look at the diary.

It can be a bit of a grounding mechanism reminds me of where I was, where I am. And it can remind me that I’m in a better place and maybe I just need to see it.

So yeah, it’s basically it’s one of my most treasured possessions. It’s not light reading. It’s uncomfortable. It took me a long time from being presented with it to open it.

And I could only meet it short pieces at a time. Because, you know, this is generally the worst time of my life. So, it took me a while before I was comfortable to read it not cover to cover, because it is quite big to me actually.

There’s a lot of info I still get quite emotional on certain elements of it. Especially the photographs. Photographs can be hard to look at.

Kali Dayton 41:08
Are you glad that you have them? Do you recommend they be taken and survivors be given that option?

David Richards 41:16
Yeah, this is this is. I’m torn on this one. When I found out photographs have been taken. I’m still in hospital, I was on the respiratory ward. And I was shocked.

I thought , “Oh no, you didn’t take photos of me.” I didn’t let on because I knew they were taken with good intentions that came from a good place.

But I was not happy. There was 12 photographs, or bow to regional ECMO center either on ECMO or in an induced coma. One single photograph back at my local institute where I started.

Yeah, I didn’t want people to see me in such a bad state. I’d had a lifetime doing competitive sports. I was quite slim, if you like, what I’m trying to say I didn’t have any excess weight. Yet, I lost more than 20% of body weight.

In my time in the ICU, I was boney, skinnym my hair looked like rats tail, greasy, thinning, shuffling on a frame with a pee bag attached to it. I didn’t want anybody to see me like that. So knowing photographs, I was quite upset. It took me a long time to be accept it.

I say a long time, talking years. I took about five or six years before I thought, “Yeah, okay, I’m actually glad they were taken.” Make no mistake, photographs, adds a layer of reality that augments the written words in the diary and really emphasizes the severity of the illness.

So yes, I’m now glad they were taken. But they still…. there’s a question of ethics. I couldn’t get permission, my photograph to be taken.

and had I been able to, I’d probably say, “no”. But yeah, I don’t know. They are part of my story. They are all in the middle of the diary. So I know where they are.

And I know if I’m flipping through the diary pages together and there is one particular photograph, which I just cannot look at and I hate to look at the image seared in my memory.

And it is a picture of… I’m on ECMO, flat, chest draines, I look dreadful. My mother’s sat at the bedside. She is resting at hand or my hand. My father is stood beside her, his arm around her shoulder.

Because at this point, they still didn’t know if I was coming home. And I can see the distress in their faces, especially my mother. And, you know, to this day, I feel guilty. I still carry guilt.

But through this even though I have no control over events, even though they are both long past, I still a lot of guilt for what happened.

and that picture, a snapshot in time, really encapsulates it, because that’s what…. they were facing the real possibility that they will outlive both of their children. My sister had died some years previously. I can see it in their faces, yeah, I don’t like that the photograph. I don’t …I don’t like to focus on it. I don’t like to see it. So yes, photographs.

Yeah, question of ethics. I suppose it’s better to have the photographs, then you can dispose of them if you don’t want them, than to not have the photograph and wish you had them.

Kali Dayton 46:15
Then we should share with caution saying “I have photographs, Would you like to see them? Would you like them be kept somewhere else later? Do you want them gone?” providing them that option. The option that they should have had in lifetime but if there’s the data, they don’t have it. But at least providing it for for an option for later. But I think what options should be should be hide them for now.

David Richards 46:42
Put them in a box at the back of the cupboard or up in the loft space or something.

Kali Dayton 46:49
But it’s, you said it’s helped you solidify what’s written in the diary. So it’s helped you really understand the reality. You had some misinterpretations of procedures, events that had happened, you thought that you were being shot at, probably during cannulation. So how did the diary and even the pictures help clarify those traumatic memories?

David Richards 47:16
They did, I’ve always believed that all of my notes are triggered by events occurring around my bed space. Much illusions and the diary, I can pretty much find a source that makes sense to me.

For the nightmares, I experienced I mean one obvious one for me is I had this nightmare where I was being chased by government I was running down this building this corridors up and downstairs and they were chasing after me firing their guns and then they caught they shot the I fell to the ground and I could feel the bullets entering my body.

Now, so me just when I have the chest drains inserted because that is way in this nightmare. I was experiencing this- being shot. It has to be a correlation there somewhere. So yes, the diary certainly helped me make sense of what my nightmare.

Something else which aided by psychological recovery as well as the diary. Was returning to the ICU. Again, that is something to be done with caution. Because that also has the potential to retrigger PTSD.

But I had this burning desire to go back. I was at the hospital… it was only about three months, probably four months after my ICU discharge. So about 6 six weeks I’d been home.

I had an appointment, probably a pulmonology appointment. I was in a wheelchair so my daughter was with me. When the appointment finished I said, “The bus isn’t coming for a while. Take me upstairs.” We go to the ICU.

So we turned up at the ICU and rang the bell. The receptionist let me in. As I was talking to her, one of the favorite nurses, I shouldn’t say…. just say she was in my top four.

Anyways, we had a little bit of a reunion and she said, “Would you like to come inside? See see some people?” I said, “yes!” But oh my gosh, as soon as I went through, a wave of emotion came over me. I was struggling to compose myself with people coming across to me and I couldn’t stay too long because it was too distressing.

So, the next time I went back, it was Christmas time. So, this is about eight months later. But this time is different. I was on my feet whereas before as in the wheelchair wheeled around the ICU.

and I could look around. And I realized that what I was seeing did not reconcile with my memory. It became clear that I had created a delusional geography of the ICU to blend in with my hallucinations.

But my eyes kept being drawn to my bed space. And I had these really strong hallucinations around the bed. Which sounds ridiculous and I always get embarrassed to say this…. that I kept hearing nurses having sex at the side of my bed in the cupboard.

And from my position because I couldn’t move my head at the limited view of the ICU. The first nurse would walk past and I knew it was them and I would be wary of them.

There was one chap, he was friendly face.And he talked to me about my children are the pictures on the wall here. He was one of these nurses who entered into my hallucinations in the negative way.

He was being friendly to me, and all I’m thinking is, “Go away, I know what you were doing. Stop talking to me.” But anyway, obviously I knew that wasn’t real. Now, what it was…. I was hearing my own breath. I had rapid shallow breathing I was almost in a constant state of panting. It was my own breathing but in that delirious state, my own thoughts would go off on a tangent.

But I could see there was no cupboard. I had a memory of a chap of bed side onto mine, his face all bandaged up, always staring at me. But there was no bed. There was no space for the bed to go!

Going back to the ICU, just looking around, I could discount so many memories as being false. So, of course, when I left, when I left, it also made me realize that I could not trust my recollection of events.

So even to this day, unless something is written in the diary that I can relate to, or somebody is present who can corroborate it, yeah, I just cannot trust it, my memories.

So those are the two big things that helped: the ICU diary, and returning to the ICU.

Like I say, it’s something to maybe…. when you go for the first time, bring somebody with you for emotional support. That does have the potential to trigger trauma.

Kali Dayton 53:36
Were you already doing your trauma therapy during that time of visitation?

David Richards 53:42
Yes.

Kali Dayton 53:45
I would imagine that likely be even more difficult or maybe even unsafe to do unless there’s some foundational work that’s been done to prepare for that.

David Richards 54:00
My therapy consisted of three different stages started with counseling. I used to meet up with a lady in a small industrial estate. A broom cupboard a few feet tall, reach high to almost touch wall to wall. This was arranged.

If you ever watch the sopranos , when Tony Soprano meets his psychiatrist and they would just sit opposite each other and she wait for him to talk. That’s what it was like.

That was the therapy I enjoyed the most because I felt like I was in control of it. I think that was an illusion created. Um, when that finished, I went off to CBT – cognitive behavioral therapy and it was this psychologist who suggested work towards returning to the ICU.

And I think this was in between those first two visits- the visit with distress and the visit wher eI was ok. So, yes, we had discussed it.

And the third stage was EMDR. I didn’t last long with CBT, because psychologists could see that was at risk of re-triggering. So she recommended, EMDR, which is a slightly gentler therapy.

And I forgot what the question was, can we have I gone off?

Kali Dayton 55:33
Oh, no, just that there, there needs to be some congruence support, right? I just worry about throwing someone that has no trauma therapy being done and available to them back into that environment. And I have had clinicians say, “Well, our survivors don’t experience that. We don’t hear that from anyone. The ones that come back don’t report that.”

And to that, I’ve suggested that the least traumatize are probably the ones that can come back.

David Richards 56:02
Yeah,

Kali Dayton 56:03
but the ones that don’t come back that we really should be worried about, or… or maybe they’re not supported enough to be able to come back.

David Richards 56:13
You Yeah, be possible. I just have this burning desire to go. I also went to the regional ECMO central spot, I’ve only been back there twice. Once it my investigation. And once they invited me back. It’s too far away for me to just fly… it’s over a two hour drive. But I’ve been back to my local ICU beds.

Kali Dayton 56:42
And that’s, that’s so valuable to the ICU as well, we want people to come back, we want to know what’s happened, we want to see them. I think it’s a mutual support, you know, people really sacrifice and work hard during those crisis, and they want to make sure that they’re doing okay. And I think for survivors that may be listening, it’s okay. And maybe it’s needed for them to know what you’re experiencing after.

I obviously have taken the theory of, you can’t fix what you can’t confront. And so being honest on this podcast about your experience, the hard things that happened, the repercussions the journey that you’ve been on to recover: cognitively, psychologically, physically, that’s really impactful and really important for clinicians to hear.

And when I share your testimonials during conferences, and I can see on livetime on people’s faces, they’re shocked to hear what you’ve experienced, what you still struggle with. This is really grossly under educated within our systems.

And so without understanding the problem, there’s no motivation to bring in solutions, such as communication devices, ICU diaries. So what would your plea to the ICU community as far as tools provide for survivors during their stay, and then what they need to be equipped with leading leaving their ICU stay?

David Richards 58:09
Right, I obviously believe that an ICU diary should be an integral part of intensive care. The onus does not have to be entirely on ICU staff. Family member can just as easily create a combination of both.

Make one each. You know, it’s not just the onus on ICU stuff. But yes, whoever’s doing this, make sure this agenda because it can be valuable in the psychologically recovery of patients.

Kali Dayton 58:54
My approach has been giving the family journal saying, Here’s what they may be experiencing, here’s what they’re going to need, here’s your job. Here’s some things that will be helpful to include. And they take it from there and the clinicians help write in it. So it’s a combined effort, but I’ve given family the stewardship over it.

And that’s almost empowering it. They feel like they’re doing something there. One wife said that it was really hard to be disconnected from her husband that long to not be able to talk to him. So journaling was her way of communicating with him and that was therapy for her.

David Richards 59:30
Absolutely. One more thing in the ICU, I think about it is orientation of the patient. And what I mean is kind of the date and time the physical.

Now, I had a view above my bed, so I always knew at the time was. However, it was a standard 12 hour clock. It said seven o’clock. I didn’t know if it was seven o’clock in the morning, or seven o’clock in the evening. Same for six o’clock, eight o’clock, there were no windows visible to me.

So I was never sure if it was night or day. So not just a 12 hour clock face. Digital shows the time in 24 hours. On the date, I have the date written on the whiteboard on the day. On the day I was discharged, one of the first questions was always to my parents was the date and time. So I think those are two important things.

And what’s important for discharge I think the patient needs. First of all, I think there should have been a big failing in mind was that there was no transition of care from the ICU to the respiratory ward.

There was an egg. It was as if the ICU was saying “We’ve done our part, now he’s your problem.” And I did not have a good time on the respiratory ward, and I believe the transition of care greatly tainted it.

And then beyond that, some sort of road for former the ICU patients. They may need it, they may not. But not just being discharged home together, which happens to a lot, unfortunately.

Kali Dayton 1:01:46
Many of our survivors don’t know what they experienced not just the reality of what they experienced. But when they’re struggling with this trauma, the alternative realities that they experienced. I don’t like using the word “nightmares, hallucinations, delusions”, because I understand that it’s so vivid for them, but they don’t have the terminology for it. They don’t understand that they experienced delirium.

And therefore, it’s hard for them to get help. How can we better equip our survivors with an understanding of what they’ve experienced and what lies ahead and what’s available to them?

David Richards 1:02:25
When I was discharged, to post intensive care syndrome had yet to be caught. So I had no hook to hang my residual health issues on. It would be close to two years before we would read about the term “PICS” in the SCCM newsletter, February 2012. I think it was published.

What I did have actually both ICUs the regional ECMO unit and my local ICU both provided my family with a small book called “After the ICU” was something like that. Just eight pages or so and just a number of little bullet points about how the “patient may experience nightmares. They have joint pain may suffer with memory, anxiety, depression”.

But it was a little more than just bullet points. It was the sort of thing you read in a pack of medication, the side effects you can get. But it was better than nothing. So definitely something that’s a little bit more detailed.

Kali Dayton 1:03:58
That’s much more than what many of our teams are doing right now. Is that what helped get you the mental help and cognitive support?

David Richards 1:04:11
Sorry, did it help, Did you say?

Kali Dayton 1:04:13
yeah, to know These might be things after the ice to be aware of or what what got you that kind of support?

David Richards 1:04:21
When I was discharged home, I thought I would make a complete recovery, and if I didn’t make a complete recovery it will be close enough that I could carry on with my previous life.

and I had good reason to think that. I’d been a competitive track athlete my entire adult life. I competed at a high level. I probably had a level of fitness beyond watch many ICU patients. So I thought I would recover better than the average.

But, it didn’t workout that way. Of course, I didn’t find that until a year, two years down the line. So when I was discharged, yes, I had this paper and I thought, “This won’t happen to me.”

I’d say, it’s like when you read a medication, or if you get lightheaded, your pee will turn orange, something like that. I didn’t pay much attention to. I wish I had that in retrospect, I think maybe emphasis at discharge saying, “This is more likely to happen than not.” Rather than just being a paper.

Kali Dayton 1:05:49
Well, that’s really helpful for the ICU side. All of your experiences, everything you’ve shared, will help provide greater preparation for clinicians to bring in these resources for their survivors. Again, there’s no motivation to be provide the urgency, the resources, if they don’t understand the problem.

And like you said, your experience is likely not isolated. This is all too common. But not everyone can talk about it. So I appreciate you. All the work that you’ve done to be able to be at this point, and the willingness to be vulnerable and open with such intimate details. And I know that this has and will continue to change clinicians and change the care and protect future patients. Thank you so much, David.

David Richards 1:06:38
Well, I hope there was something of value that I’ve just spoken about. But thank you for inviting me onto your podcasts and allow me to speak about my experience.

We’ve been discussing it for two years, but things kept getting in the way. And we have to keep putting it off. Because I’m pleased that we have finally got it.

Also, I must mention the Department of critical care, hospital Royal Hospital the other day. Because of them, I will be here to talk about my experience. I also need to show my gratitude to my former partner who created we no longer have an older relationship, but grateful to for having the foresight, perseverance, to compile the diary. It is not one of my mosttreasured possessions. wisely.

Kali Dayton 1:07:38
The ICU hadn’t put her on to that task. But that’s incredible that she took that upon herself intuitively.

David Richards 1:07:44
Well, she had no knowledge of the psychological benefits of ICU diaries. He was still in the embryonic stage in the medical.

Kali Dayton 1:07:51
Right!

David Richards 1:07:52
So yeah, yeah, that was a good thing. And lastly, back to you again, Kali. Thank you for flying the flag. For ICU patients continue to receive residual health issues that impact their quality of life as a consequence of the ICU experience. And for educating a field of critical care and the wider medical community.

Think about the long term physical, psychological and cognitive appetites of patients by changing the long established ICU practices. We met just when you’re launching a service. So I’ve been with you all along the way. I appreciate you and all the work you do.

Kali Dayton 1:08:49
There’s a lot of work to do. There’s amazing things happening. We’ve created a powerful community that’s growing. And because of all that you’ve taught me all that you shared here and throughout the clips in the videos.

You’re we’re going to see changes we’re going to see our visions come to fruition so thank you, David

David Richards 1:09:09
Yeah.

Transcribed by https://otter.ai