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When patients suffer from delirium in the ICU, what resources are available to them to support their cognitive rehabilitation Psychologist, Dr. Jim Jackson, from episode 51, returns to the podcast. He shares with us his journey to writing his new book, “Clearing the Fog” as a roadmap to recovery for survivors.

Episode Transcription

Kali Dayton 0:02
Jim, welcome back to the podcast. You joined us in Episode 51. But let’s do a refresher. Tell us about yourself again.

Dr. Jim Jackson 0:11
Hey, it’s great to be with you today. And that was a long time ago, Episode 51. I’m Jim Jackson, Dr. Jim Jackson, I’m a neuropsychologist at the Vanderbilt University Medical Center. I’m the Director of Behavioral Health at the ICU Recovery Center.

A lot of long titles, it seems, but the gist of it is that I work with ICU survivors, including survivors of the ICU who had COVID. And I work on cognitive issues, mental health issues, functional issues, really try to find ways in my clinical work, and my research work to help medically ill survivors thrive instead of just survive.

Kali Dayton 0:52
And I recommend that everyone goes back to Episode 51, to hear about your incredible journey to how you entered that specialty in this niche and all the incredible work that you’ve done throughout your career.

You’ve been such a strong advocate, you’ve put out great research, a lot of things that have impacted ICU clinicians throughout the years. Last episode, you talked about the reality of post IC PTSD, and what you’ve learned from survivors. And that was back in 2021, we were in the thick of the pandemic. And you were just the go to person for COVID survivors, it seems right.

We’ve always had very minimal resources for post ICU patients. And now you have this huge influx of patients, you’ve been doing a lot of work. Tell us about what the pandemic was like for you on the back end of ICU care, and what you’ve been working on since then.

Dr. Jim Jackson 1:49
Yeah, it was a crazy time. It’s a crazy time for so many people, the pandemic surreal looking back now, it was so terrifying, so existential, really the threat. And for me, I think what happened was, we had been working with ICU survivors for a long time.

And when COVID emerged, and it became clear that survivors of COVID, whether they were in the ICU, or whether they weren’t, when it became clear that they were going to have some challenges. We already had a research afterburner apparatus in place, we already had a framework in place. And so we were able to adapt that a little bit. And to begin focusing not only on the needs of ICU survivors broadly, but we were able to focus on the needs of ICU survivors, with COVID, as well as people with COVID.

And more generally, we, we turned into a bit of a, gosh, almost like mental health MASH unit, if you want to think of it that way. For people with long COVID, we started adding support groups, we have five or six now.

We see people from all over the world, we have a couple of people from Europe, for instance, who attend. And one of those very large one is for ICU survivors, four of them are for COVID survivors who were or were not in the ICU. One of them is for family members of ICU survivors who had COVID.

So the support group model that we that we thought was was effective, that has really proven to be, I think, a lifeline for people. And we’ve been busy engaging in that. We’ve got long waiting lists for all of the support groups, we’ve been engaged in a lot of research, as well focused, especially on cognitive rehabilitation, because I think what many people have, I see survivors with COVID.

What many of them have is a brain injury at the end of the day, and we’re trying to figure out how to rehabilitate that. So a lot of studies, a lot of support groups, busy at the clinic. Often it feels like we’re drinking out of a firehose, but you do what you do, right, you see the need, you see how profound it is?

And you join arms with your colleagues and you do what you do. And it’s with a lot of gratitude that I say that I think we’re making a difference in the lives of COVID survivors. And it’s very humbling, really,

Kali Dayton 4:21
Could you have known decades ago, that your research would lead to something so important at such a pivotal time throughout the world, to be able to catch people on the other side of this?

Dr. Jim Jackson 4:34
Exactly. It’s it’s really humbling. And I think, you know, the Field of Dreams, that famous movie, There’s that famous tagline, if you build it, they will come right if you build it, they will come. And the last thing anyone would want. The last thing I would want you would want anyone would want is a pandemic.

But one thing It has happened is we have this resource and people have come, you know, people have come. And it’s powerful to see that, although it’s not easy, there’s no magic wand. When people get the treatment they need. Many patients improve, you know, there are challenges related to COVID that are pretty intractable. We don’t know how to fix them. We don’t necessarily know how to address them.

But there are challenges following COVID, following critical illness that we do know how to address and when people get the treatment they need. Very often they improve. When people get cognitive rehab, they improve. When people get treatment for PTSD, they improve.

So to be part of that story, where we’re providing treatment to people, or referring people to people who can provide treatment to them. It’s really, really gratifying. We see change happen, I think, every day, and what else can you really ask for?

Kali Dayton 5:59
And most of the listeners of this podcast are ICU clinicians. And I’m sure they’re thinking, what treatment? What are you talking about, right? That’s not something that I suicide is aware of, they’re grossly unaware of what life is like after the ICU. Oftentimes, we’re fairly unaware that a patient has had delirium or suffered a brain injury during their ICU stay.

And we’re not ready to give them access to resources outside of the ICU. If a patient has an acute kidney injury, we’re gonna set them up with a nephrologist, if we see residual effects of it. If they have ARDS, they’re gonna see pulmonologist after the ICU. But if someone’s had delirium, we, ourselves are unaware of it.

And we grossly under prepare patients and families for that life after so what are you talking about? What resources you say we know how to treat this? But But really, we as in the ICU community on the other side, we don’t. So what do we need to be preparing patients to face? And what can we get them access to?

Dr. Jim Jackson 7:05
That’s a great question. And a great point. I mean, there is a hole and a gap so big, you could drive a truck through it, you know, you could drive a semi truck through it. And that gap, I think, is the disconnect between ICU clinicians who are experts, they’re the experts, experts at saving your life, right?

If you’re in the ICU, they’re the ones that you want, by your bedside, right to save your life. But there’s a disconnect often between those folks and people who can provide follow up care, often very effectively. And that’s something we need to focus on.

And that’s an area where we need to do better, you know, consistently, when we see patients after the ICU, they have PTSD or cognitive impairment, whatever they have, and they say, In desperation, and sometimes with some anger, “No one told me, you know, no one told me what to expect if someone would have told me maybe I could deal with this, but but nobody told me to expect it.”

So I think at a minimum, we need better education at the time of discharge, or perhaps a little before that both for patients and their families, which is, “Hey, Mr. Smith, Hey, Mrs. Johnson, this might not happen. But it might, right, here’s what you should expect. And if you have these symptoms, it doesn’t mean you’re crazy. It doesn’t mean you’re losing your mind. It means you’re one of the millions of people who have PTSD after the ICU, and it’s treatable.”

That’s the message I think, that we need to send people as it relates to PTSD, as it relates to cognitive impairment as it relates to things like depression, anxiety, plus or phobia, which is a concern. There’s so much so there’s that education gap from a treatment standpoint, though, what I would say is in the cognitive arena, we that is collectively OTs and SLPs.

And, and rehabilitation specialists. We are really good at helping people engage in cognitive rehabilitation, learn new strategies, learn work arounds, learn to compensate, it makes a difference that’s just in the cognitive realm.

Kali Dayton 9:19
And how does people get access to that? Right? I mean, we need to tell them that you’ve had delirium. It could result in these effects throughout your life. And then here’s how you can get access. How do we set up consultations from the ICU side before discharge? How should it be for our survivors?

Dr. Jim Jackson 9:39
This is a huge problem. And it’s partly a math problem. I’m not great at math. I struggled in math 100 and college for a couple years. But But I know this. There’s a supply demand problem. That is a huge problem. That is there are literally millions of people each year who emerge from the ICU with cognitive impairment for that matter. Add her who developed cognitive impairment after COVID.

Even if they weren’t in the ICU, so millions of people with problems. If you add up all of the speech and language pathologists in the United States, I’m not sure how many that is. But maybe it’s 20,000 or something. It’s not a million, right.

So we really don’t have the resources that we need. But it’s not nothing. You know, there are a lot of people who can provide support, and never the twain shall meet, sadly. So I think we need to be educating the social workers, the nurses on the floor, the discharge planners, the hospitalist, whoever the people are, that have conversations with patients, before they leave the ICU, we need to be educating them about the nature of the professions that can help.

And I think we also need to expand this fledgling ICU recovery center model, which exists at Vanderbilt, and a few dozen places around the United States, but it’s still kind of a luxury item. Most places don’t have this.

If you look at cancer survivorship clinics. Last time I checked, and it’s been a while there were about 340 of them or so in the United States, 340 clinics that call themselves Cancer Survivorship clinics, the number of people surviving the ICU is probably pretty comparable, I would think, to the number of people who are surviving cancer.

And yet, maybe there are 20 functioning ICU recovery clinics. So it’s a huge problem. And I think that’s one thing we need to do, we need to develop post discharge models of care that can identify problems in people and either provide services on the spot, or refer thoughtful.

Kali Dayton 11:51
And I’ve been contacted by people that are working on developing those within their systems. And that’s gonna be a whole nother podcast episode. But in a nutshell, what what quick advice would you give to those that want to start that kind of program for their survivors?

Dr. Jim Jackson 12:05
I get this quote wrong, but I think I’ll get it right today. That is, I would tell them the perfect is the enemy of the good. Right. So when Carla Steven and I decided to start the Vanderbuilt ICU Recovery Center.

It’s not like we were a couple of cowboys, I think we had some general idea of what we were doing. We’d worked with, with ICU patients and survivors for a while, but we were not prepared, right? We weren’t prepared. And if we would have waited until we were completely prepared.

It’s very similar analogy, or analogous, I think, to saying, “Hey, I’m gonna wait to have a baby until I’m prepared to have a baby.” Well, you know, if my wife and I had waited, we’d never have had any kids, right? So ever, ever. Right?

So what I would say to clinicians who were interested is, “Come on in the water’s fine, you know, jump in the pool, stop walking around the edges and dipping your toe in, we really need you, we can help you.”

Will you get it exactly right? Probably not. You know, is there much of a roadmap, there’s not, but we really need you to stop being tentative jump in the deep end of the pool and join us. Because it’s a problem, that there are only 20 icu recovery centers, and, you know, 20 million ICU survivors around the world, it doesn’t quite compute there’s a problem.

Kali Dayton 13:33
Absolutely. I’ve been surprised by the survivors that listen to this podcast, when they reach out and say this has helped me so much. But that wasn’t even the focus of my podcast, I was trying to have them teach the clinicians but for survivors to hear other survivors share their experiences, though not even in an intimate support group, not even talking to them directly.

But they finally found validation, and more clarity as far as what they’ve experienced and what they’re going through. I was surprised by how much that meant to them. So my mind isn’t really that complicated to say, here’s the support group jump in, and then find their needs and find the resources that fit their needs. And you might be a pioneer within your system. But now we have pioneers like you that are further along that can help guide the process. Right?

Dr. Jim Jackson 14:20
Exactly. The support groups are a relatively easy way to enter the fray, if you will, because they don’t require a lot of resources and an ice Recovery Center, you’re going to have to use some space and some real estate, right. But support groups these days are predominantly virtual, I think they’re all virtual, everything’s virtual. So it’s fairly simple from from a barrier standpoint, they’re not that many obstacles to overcome.

The other part about support groups that is lovely from the standpoint of a clinician is you can impact eight or 10 or 15 or 20 people at the same time. Right As opposed to needing 20 encounters with people, and that experience that you thought Billy reference, which is that experience of someone hearing someone else tell their story and then scratching their head and saying, Gosh, that’s me, that’s really profound.

I think the other thing that is really profound with the support groups, is seeing other people make progress and realize, gosh, maybe that could be me. So in one of our support groups, we have a guy who was in the ICU with COVID, in the ICU for 50, or 60 days, rehab for 20 or 30 days, you know, he’s a bonafide card carrying ICU survivor by any metric.

And he returned to work as some people do, as you know, not everybody, but but some do. And six months or seven months ago, he shared with us that he had gone back to teaching at his elementary school, and he had just won this award Teacher of the Year. And it was amazing. It was amazing. It was so profound. And everybody in the group was so encouraged, and he still struggles, right?

It’s not easy. But it’s a, it’s a glimpse of what could be right, I can have this trauma, I can endure it, I can be resilient and gritty. And I could be Teacher of the Year, right? Who knew. And so that sort of inspiration, it’s not just, it’s not just rainbows and unicorns, and butterflies, but it’s real people making real progress. It’s hard fought. And when patients see that in their peers, it inspires them in a way that I certainly can’t. So support groups are valuable for that reason.

Kali Dayton 16:41
To make it just keep thinking, you’re saving lives, quality of life, for sure. You’re saving family relationships, careers, things like that. But even just the cut and dry life and death, you’re saving lives, I’ve been on some of the support groups.

I’ve already seen some people that have passed, that have died from from suicide survivors, that just, it was a lot to live with these effects. But you created a place where they can come and support each other, you’re saving lives. This is real trauma.

Dr. Jim Jackson 17:17
It is real trauma, I’m touched, I’m touched by your emotions, and I’m about to get emotional myself, which would be fine is fine. And, and it is I mean, these are these are important encounters, right.

And this is, you know, I have a strong Christian faith. And in my case, I’m careful not to not to hit people over the head with that I’m really respectful. But this is holy work. As far as I’m concerned, you know, this is missional. It’s totally work we’re doing that you’re doing. And it’s it’s motivated by a desire to help people with meaningful lives.

But the first part of that sentence meaningful lives is live, right? live meaningful lives. Because if you’re not alive, doesn’t matter whether your life is meaningful or not, you know, so we want people to be around long enough to create a meaningful life. And I think suicide is a concern, right? It’s an ever present concern.

And it’s something that we talk about openly in our support group is something that we engage directly. And it’s something that I encourage other clinicians to talk with patients about directly as well, I think there’s this reluctance, which is born from a real misunderstanding, which is, “gosh, if I talk about suicide with my patient, I’m gonna plant a seed in their head, and they’re gonna go kill themselves.”–and it’s somehow a function of me raising the topic.

I think nothing could be further from the truth. You know, what, what is really going to put people at risk is creating an environment where they’re really struggling and don’t feel safe to disclose what’s going on, you know, you’re not going to prompt someone to commit suicide by asking them honest questions about their state of being that’s what we need to do.

And I would say, and this is controversial and debatable in some circles, I think but, but it behooves us as clinicians, I’m learning this is one thing, I’m learning one of many things, to be increasingly honest and vulnerable about our own struggles about our own struggles, whatever they might be, because in doing that, as I talk about my own challenges in doing that, I give my patients permission to do the same, right?

The more I’m humanized, the more they have permission to be vulnerable to and that vulnerability from me from them, etc. That creates a quality of intimacy and a quality of community. That to me, is the optimal environment for healing.

Kali Dayton 19:54
And that helps foster true empathy. It does exactly empathy not just looking up Sitting on your pedestal looking down and saying that’s really sad for you guys, but to say, I understand suffering, and I understand exactly my own way, these emotions, and it’s part of our mortal journey and you experience and that is not unwarranted.

After all they’ve been through, they didn’t know that that’s okay to have those feelings. I keep on thinking about the suicide screening tool we use upon admission to the hospital. But no one’s asking those questions.

Usually after they leave the hospital after that, after they’ve went through horrific delirium and had completely traumatizing episodes, and now they have a brain injury and life is completely different after the ICU. No one’s really prying and asking, are you okay? Do you have any of these thoughts?

Dr. Jim Jackson 20:47
Yeah, they’re really not. And I think two things. One, we want to help alleviate suffering, of course, we want to help alleviate suffering. But the other thing we want to teach people and this I think is really important is we want to teach them that:

Even if all of this suffering isn’t resolved, right, even if your neuropathy isn’t resolved, even if your fatigue doesn’t go away, even if your cognitive problems don’t go away, you can find a way to live with those, and still live a meaningful life.

And I think that’s an important message. And, and that’s been a really personal message to me. I don’t think we’ve talked about this. So I’m, I was gonna say, I’m going off script, we don’t really have a script, you and I to go off script.

But back in 2021, when we were, when we were on the call, during the pandemic, I was really in the midst of struggling with OCD, which had been diagnosed in my life in 2018 or so it really come up kind of out of the blue had become a big challenge for me. And I went to see a psychologist, of course, and I said, first of all, what is it? She said, It’s OCD. And then I said, like, “How can we get rid of it? Let’s just get some napalm, and let’s just burn it down, you know, because I don’t want it.”

And she said, some version of kindly, you know, “Fat chance, Jim, you know, that’s not the way it works. Like we don’t, we don’t just pull it out like a weed like, you’ve got it, you know, you’ve got it.” And I said, “Well, I don’t want it. And she said, you know, we’re gonna help you, but you’ve got it.

And that began a long journey of mine, where I realized, “Gosh, I need to find a way to be okay with this. Because it might not be going away.” You know, it waxes and wanes, it gets better gets worse, but…. But how can I find a way to live the life that I want to live, even if it never goes away?

And I’ve learned for the most part to do that. And many days, not every day, some days, I countered a real blessing, I can see the changes that it’s contributed to in my life. I don’t always feel that way. But I do always believe now that that cure isn’t what I have to have to live a rich life, right, I can find a way to coexist with something hard that I didn’t want.

And that’s the message that we highlight with our ICU survivors a lot. I mean, we want them to get better. We want them to get rehab, we want them to be restored, whatever that means. But we also want them to embrace this idea that “Even if I don’t get back to my pre-ICU state, I can find a way to have a really meaningful, wonderful life, living alongside of these hard things.”

And I think when we teach people that they can embrace that mindset, and we give them the tools, oh my gosh, that’s really powerful. That is really, really powerful.

Kali Dayton 23:51
And I see that in the participants of your groups that I’ve interacted with. There is level acceptance, there’s a sense of mission purpose, they do have fulfilling lives. And they’re also very honest about how their lives are different after the ICU this things that they’ve suffered. They’re just, they really have in so many ways accepted. What’s happened. What does having a diagnosis, play? How does that impact that phase or that process of acceptance?

Dr. Jim Jackson 24:22
It’s really a great question. And a diagnosis is interesting. Because in my experience for some people, if we take PTSD as an example, I have interacted with so many patients, countless patients who I believe at PTSD, maybe they haven’t been formally diagnosed with it.

And you will bring it up to them thoughtfully, “Hey, Mrs. Smith, you have PTSD.” And depending on the patient, some people will say “yes, that is amazing. Like you’re validating what I have. This is really helpful. Now it has a name.”

So that’s about positive impact from that diagnosis, someone else might say, “oh my gosh, I didn’t know that until right now, this is a source of incredible shame for me.” And now the wheels are about to come off the car, right? “I really can’t tolerate a diagnosis.”

So it’s very sort of individual how people receive that regard, regardless of how they receive it, I think telling the truth to patients as a clinician is important, right? being thoughtful, but the thing that that makes a diagnosis, so difficult for people, especially in the cognitive, or the mental health realm is shame. It’s shame.

And I’ve never been a fan of shame. I mean, I’ve carried a fair bit around with me over the years, but never been a fan of shame. But I think, since the onset of the pandemic, interacting with patients who feel ashamed that they got COVID feel ashamed that they’re struggling, I think I have gained a new appreciation for just how harmful it is.

And one of the therapeutic challenges and or opportunities that we have, on a daily basis, I think, is to teach people to invite people to be kind to themselves compassionate to themselves, and find a way to let go of this shame. Because shame, I think, keeps people shut down. It keeps people stuck. It keeps them from growing. And it’s really the enemy of the progress that we want to make with patients.

Kali Dayton 26:32
And how can we in the ICU? start that conversation? How do we prepare families? How do we create an awareness that can catch the survivors shortly after they come out to say, “It may be like this, and that’s okay. This isn’t your fault,”- or like, with immediate validation, and preparation and support rather than having to languish and, and silent suffering or all these questions and self doubt for years and then have, you know, finally have someone to say, “Yeah, this is what you’ve been struggling with.”- How do we start that? Right at the beginning?

Dr. Jim Jackson 27:05
It’s a great question. I mean, I think anything we can do early on to normalize, what this post discharge experience is going to be is important. I know there are some places that have begun to introduce ICU survivors to patients on the floor before they leave the hospital, let’s say.

And I think that’s a really useful thing to do, right to help someone realize, hey, this guy is quote, unquote, “normal”. He’s okay, she’s okay. They’re struggling. I think anything we can do to normalize it is really important. And I think in support groups, in clinical encounters, whenever we have the opportunity, as clinicians, we need to be highlighting that there’s no need for patients to feel ashamed.

It’s an invitation more than hitting them over the head, because the last thing I want is for you to feel ashamed about feeling ashamed, right. And that can happen too, right? So so it’s not me forcing you to believe me that you need to stop being ashamed, it is inviting you to consider a different way of relating to yourself.

And I think, not to go back to the support group too much. But support group is important, because it offers what I would call modeling, right? So if you and I are in a support group, and you’re leading it, and I’m being really hard on myself, and you’re being really kind to me, that’s powerful modeling, right?

Or if you’re having a hard day, and you’re being kind to yourself, and I’m seeing that that’s powerful modeling, we can model in the support groups, what we want people to do, and self compassion, I think is really important.

Kali Dayton 28:47
So, so good. Yeah, I am. I hoped that being one of the fruits of COVID Yeah, I have the life after the ICU and have more research sources for people to come. I’ve had ICU survivors from before. COVID say, “This is so great. Now, these things that I’ve been struggling with are brought to light even more. Finally, there’s validation for me as an ICU survivor.”–, because COVID has brought so much awareness.

And I mean, you just written a book. And that is probably content that would have been unheard of 10 years ago, right? But now we’re gonna have this access to this resource for clinicians and the layman to really write it out what is going on after the ICU especially for COVID survivors. Tell us more about your book.

Dr. Jim Jackson 29:36
Yeah, thank you. I did write a book. I didn’t set out to write a book and one day and 2022, early 2022, I realized that there were really a dearth of resources for long COVID survivors, whether they were in the ICU or out of the ICU, especially having to do with mental health and cognitive challenges after COVID and So I wrote a proposal and it kind of moved down the assembly line.

And lo and behold, I found an agent, we found a publisher. And I had about six months to write it. And, and I did along with my editor, Lindsay, and it was really a great experience so rich, and the focus of the book, it’s many things, but at the end of the day, it is this idea that there’s a way to move from just surviving to thriving with your situation, whatever it is.

And I think I learned that kind of cutting my teeth on research with ICU patients, because I think I’m sure this will resonate with you. For a long time, we would think we thought that just helping a patient survive was checking a box, right? “Gosh, we checked the box, we did it. It’s amazing, right?”

But if you talk to patients, they would say, “not so amazing, right? Like, there is a life that is worse than death, right? Not so amazing.”

You’ve got to be concerned about quality life, you’ve got to be concerned about function. And so. So the surviving to thriving owes a lot to the idea that I learned back back in the early days of my research that we’ve got to expand our focus, it can’t just be on surviving. And as we have interact with patients time and again, as I’ve interacted with so many that I talk about in my book, “Clearing the Fog”.

There are people who struggle, yes, but there are people who still find a way to thrive right in the face of all of these difficulties. And the book. While it doesn’t make light of challenges, I mean, the challenges are so big, and lays out a roadmap to come to terms with what I think is a new normal.

Some time ago, I’ll share this anecdote. Dr. Steven and I worked with a young woman. And she liked to serve and that had been a big part of her identity. She was very critically ill in the ICU. And she lost most of the toes on one of her feet. And she sent us a video a couple years ago, clicked on the video opened it, there was a picture of her in Central America, in the ocean, she was on a surfboard surfing.

And there was a note that said, “Sometimes you don’t have to survive, you can actually thrive.”- she was surfing. And she’s thinking of starting a therapeutic surfing school. And it’s so beautiful, right? It’s a picture of what can happen.

So the book talks a lot about finding meaning in difficult things, it talks about concrete therapeutic strategies and talks about post traumatic growth, which is a concept that I think is really important. And that is that not for everybody. But for many of us, we can have this experience through suffering, of having reoriented priorities, finding a different quality of meaning of having a different experience with with the ethereal, if you will, with a spiritual that good things can happen from suffering.

And again, we’re not trying to shove that concept down someone’s throat. We’re inviting them to consider it. And I think in considering it, a lot of change and growth could potentially occur.

Kali Dayton 33:30
Can this be the kind of tool that we should and could give access to as for the families in the ICU? We say, “You might want to consider looking into this book, this book may help your loved one on the other side of this…”

Dr. Jim Jackson 33:43
I think so there’s a big section in the book on families. And I think, too often far too often, when we talk about post intensive care syndrome, or for that matter, long COVID We talk about it as if it is an individual problem, right. And it is far from an individual problem.

You know, in the book, I talk about my cousin and I playing in the pond behind my grandma’s house, you know, way, way back way back when and about how we would skip stones. And there would be all these ripples, which would lead to more ripples, which would lead to more ripples and more ripples. And that’s what I see, frankly, when you think about the impact of pics, let’s say right?

The the impact of picks on a patient, there’s a ripple it impacts his children. It impacts his spouse, it impacts his family, his employer, right? And all of those things, then come back and impact the patient. You know, your your, your son is traumatized and has anxiety and therefore you feel even more ashamed. And as a consequence, you’re less effective as a parent and so your son’s anxiety gets even worse. I mean, it’s a vicious cycle.

And I think we need to move out of this sort of Western, hyper individualized focus on a single patient, and recognize that these illnesses have wide ranging impacts, societal, familial, and clearing, the fog talks a lot about that, and talks about a way forward with regard to that.

Kali Dayton 35:20
Oh, that’s so and that’s, that’s a podcast episode to come coming is picks for families. But I’m just thinking about other conditions like addiction, cancer, TBI, there are support groups for those families, for loved ones of those that have these conditions, to help them process their own grief their own feelings with it, as well as give them tools to help their loved one. But when it comes to post-ICU…

Dr. Jim Jackson 35:46
It’s, it’s really remarkable. I mean, we have this family group, this one family group, and it is powerful, it is so lovely. But there are a lot of struggles that I hadn’t even thought of, you know, one key one is that family members of long COVID survivors, family members of patients with PICS, they are constantly worried about their own health, they’re highly vigilant about their own out, because they’re afraid, you know, “If I go down, who’s going to take care of my husband? Who’s going to take care of my wife?” Right?

So. So there are I think 101 different ways in which family members are worried upset, sometimes feel guilty, and they need a lot of attention. I mean, they need our focus, they need our concern. It’s not just patients, certainly children of patients with pics, that’s a whole different conversation to write about, about their development cognitively and emotionally.

And otherwise. People often say how his PICS in the context of the pandemic different than it was before? And I think that’s a good question, right? Because people were in the ICU and COVID people were in the ICU long before COVID, long after COVID You know, if you will, people will be in the ICU. But I think one thing we’ve noticed that’s really profound is that social isolation that happened during the pandemic, that was quite unique, right?

And for a long time, before the pandemic, if you said to patients, how did you make it through the ICU, they would say things like, if it wasn’t for my wife, at my bedside every day, I never would have made it like she’s the one who got me through. But during the pandemic, there was no wife at the bedside, right. Like often there was a wife.

Yeah, I mean, I frequently I’ve had people say things like, I drove my car, parked it in the parking lot facing the emergency room or the ICU, I sat in the car all day and cried, right wondering about my husband. So that degree of isolation, pretty unique. And so we do see, I think trauma in the context of COVID in the pandemic COVID in the ICU during the pandemic, that is even worse than usual, if that’s possible, right, that isolation was not our friend, not our friend.

Kali Dayton 38:14
I believe it and we’re still trying to recover from it. There are some ICUs still have strict visitation restrictions, despite the very obvious trauma caused, we have worked. So we’re still stuck in a lot of ways. How can teams or individual conditions access to your book?

Dr. Jim Jackson 38:34
It’s available on Amazon as of right now. It’ll come out it’ll be available to purchase on May 9, which oddly enough is my birthday. I hadn’t planned that, actually. But but that kind of a fun, kind of a fun thing. Perfect thing. So it’s published by little brown and available in bookstores. And I think the thing that people will find the most helpful, it’s very practical, very, very practical.

And I think that’s what people need, you know, medical textbooks if you read them. I sometimes read them. They’re useful, right? But how valuable they are to the man on the street. I’m not so sure, right? Like, you could derive some value from them. But but this book is, is really practical. I have a lot of analogies that I liked that involve food, other people can figure out what that means. But but I do.

And so I like to say, “Let’s put the cookies on the shelf where you can reach them right where you can reach them. And I think in this book, there are a lot of cookies, chocolate chip cookies, maybe my favorite and they’re on a shelf where people can reach them.”

These are concepts that are accessible. These are stories of real patients. They’ve been de identified, etc. But they’re stories of real patients. I think they’re very relatable and they’re going to they’re going to provide I think ain’t a useful guide for people at a moment in time when a useful guide is badly needed.

Kali Dayton 40:07
But this is so exciting and very much needed. And I know, the audience in this podcast is very biased, but you’re talking to a large group of people that are very interested in helping patients survive and thrive. And so we’ve needed this tool for a long time. So thank you for stepping up and creating it and, and dedicating all of your, your whole career to immortalizing. These, these tools for many survivors to come. Thank you so much, Jim.

Dr. Jim Jackson 40:34
Well, thanks for your kindness. And I want to commend you, you’re doing such a great job with his podcast, getting the word out and giving people an opportunity to share their voices. So May your tribe in Greece Great job,

Kali Dayton 40:48
thank you so much.

Transcribed by https://otter.ai

 

Resources

“Clearing the Fog” by Dr. Jim Jackson, PsyD: https://www.amazon.com/Clearing-Fog-Surviving-Thriving-Practical/dp/0316530093

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