Supporting Caregivers to Individuals with Traumatic Brain Injury

9:23PM Mar 17, 2023

Speakers:

Michael Jones, PhD

Keywords:

counseling

tbi

caregiver

person

people

counselor

traumatic brain injury

happen

concussion

talk

injury

concerns

respite care

dealing

neurologist

situation

family member

brain injury

loved

cousin

Hello and welcome to the thoughtful counselor, a podcast dedicated to bringing you innovative and evidence based counseling and mental health content designed to enhance your life. Whether you're a clinician, supervisor, educator, or a person wanting to learn more about the counseling process, we are here to demystify mental health through conversations with a wide range of counseling professional powerhouses. In each episode, you'll learn about current issues in the field, new science, and real life lessons learned from the therapy room. Thank you for joining us on our journey through the wide world of counseling. There's a lot to explore here. So sit back, take a deep breath. And let's get started.

Hello, everybody, my name is Dr. Michael Jones. I want to welcome you to the thoughtful counselor podcast and I am very excited about our topic today and also our guests we have today. Our guest today is Dr. Richardson. She the Licensed Professional Counselor and supervisor in the state of Alabama. She is also a nationally certified counselor. She received her PhD in counselor education and supervision from the University of Alabama. As a full time clinical faculty member at Southern New Hampshire University. Dr. Kim has nearly two decades of clinical experience working in Community Mental Health, University Counseling and substance abuse agencies. She is also the owner and executive director of Jenkins, Richardson and Associates counseling and consulting. And this is a private practice that was established back in January of 2021. And through a private practice, Dr. Kim and her team provides contractual counseling services to a variety of community agencies and educational organization. And so that that's her her official introduction. Our unofficial introduction is I've had a great pleasure of knowing Dr. Richardson. For about a decade now. We went to the minority fellowship program. Together we have presented together. She's fun, she's a fun person. So I'm excited to be able to have grown here and get a chance to talk with her. So, Dr. Richardson, thank you for coming and being with us today. So I just want to kind of start off with a real easy question. And we'll we'll get to it. As we go on. We'll get into deeper into our the topic we're here for today. But I'm just kind of curious to know that what what about counseling helped me understand what made you go into counseling and choose this career field?

Well, first, thank you for having me, this is amazing. So just a little about why I went into counseling. Growing up for a long time, I wanted to be a teacher. And during my grade school years, I had my first interaction with the school counselor during a pretty tumultuous time in my wife about having some medical issues and teachers align me with the school counselor and I was able to kind of go in and process some things during the school day. And then this one really, really wouldn't hit me that maybe I've wanted to do counseling because I did have what I'd like to call a helpers heart. And I didn't know at that time what it was going to look like. And even though I ended up in education anyway, as a counselor educator, my heart is really in counseling, and specifically in clinical mental health counseling. So that's a little bit about how counseling initially resonated with me. But I've been doing this for so long, I honestly cannot see myself doing anything other than counseling in conjunction with my counselor education role as well.

And, to me, it's always interested in hearing like, what brought somebody into into the field. And especially as people I've not interviewed on here and just in this council in general, I've talked to this things have always been that one person who kind of influenced us like either either in a positive or negative way, either. They were really good therapists. And we're like, Man, I want to be like them. They helped me through something or they were pretty horrible. And we're like, Okay, well, I won't be exact opposite of them. So yes, me.

Yeah, yeah. And so hopefully, fingers crossed that most people now will have more opportunities to come into contact with people who are good counselors, and have good experiences but Of course, we know those, you know, those times happen where we are in contact with people who may not be the best of the best. But hopefully that's changing as time goes by. That's my counselor educator talking right now. Right. So, but, yeah,

yeah. So we're in that role of trying to make sure there's good people out there for people to meet with. And so that's that's definitely a firm responsibility. Yeah. So I know, you know, our topic today, we're looking at, you know, how we're looking at traumatic brain injury and working with people, for caregivers who are working with family members who are dealing with traumatic brain injury. So I guess from some of your experience, if you kind of if you feel my cat tom, kind of helping our listeners understand some some some broad concepts when it comes to like traumatic brain injury, how do you? How do you explain that to somebody who doesn't really know what it is? And when someone says, I have a traumatic brain injury on a limb with somebody that has a traumatic brain injury? What does that even what does that even mean?

Right, right. So traumatic brain injury is, is is a huge concept. And I think most of the time when people think about traumatic brain injury, they often think like one end or the other someone who had like a concussion and are walking around and functioning, or you have someone that is on the severe in that is totally unable to, to do anything for themselves. But there's so many different parts and pieces to it. You know, there are things like mild traumatic brain injury, sometimes you see that with former athletes, or, or current athletes or people who have been in like, car accidents or something. And it could range from anything, or even a foul like it can range from anything from someone having like, headache fatigue. Someone may come to you in for counseling, because they may be having like small memory issues or like brain fog. All the way up to things like mood swings, and mood changes are finding issues with like sleeping and functioning right. And so even some of those look like other diagnosis. So they may come in, and they may just say I'm really depressed, because I'm having these mood changes, or maybe I have bipolar disorder. And then you kind of go through some history, and then you recognize that maybe they were a soccer player, and has had multiple concussions over time. And that's what's presenting here. All the way up to maybe the person that has a traumatic brain injury isn't your client, maybe there's a caregiver or even a parent or a partner that is coming in. And they are talking about how their experiences have changed with their loved one since a traumatic brain injury. And that in itself is a huge undertaking. I know often we deal with caregivers for a variety of different reasons. But it's something specific about working with a TBI caregiver. And we're probably going to speak to this over time. I don't want to give the whole thing away but that working with them may cause a have to have you to do a little bit of research about what TBI is, what to expect when they talk about and even some of the language that they use when they are talking about specific things related to TBI is. Yeah,

and I think what I find interesting about that is, you know, going through my master's program, and also going through my Ph. D program, like our religion can't recall a class where we sat down and focused and talked about traumatic brain injury, and all and so, and now even as a counselor educator, but the classes I teach, I know, I'm not really talking about it much. Would you say that some sense, you share some similar experiences?

Yeah, absolutely. So you can sit in your DSM class or your diagnosis class, and you can talk about all of the criteria that meet certain diagnosis. But the interesting thing is some of those same criteria matches what you will see in someone with a traumatic brain injury. So then in that situation, do you diagnose them with major depression, major depressive disorder, or are you really looking at this as a medical concern. And I think that is a little bit of a loophole that hasn't been filled yet when we have those conversations about medical concerns like traumatic brain injury and what that looks like in the mental health field.

I know that this has been a topic that's becoming a lot more recently, especially when we're talking about sports. And we're talking about the recent news and things of that nature. We're this has become more of a broader conversation that we're having. But like I said, but But even with this being that conversation still didn't come. Like I said, like there's such a lack of knowledge that many of us have, where the word toma as being a counselor, or just a person who is just has a family member or loved one does this deal with that, that we there's a lot we do just we just don't know. Yeah.

Yeah, and interesting that you say that. So we are hearing. And it's so interesting, because when you hear it like in sports, you hear about concussion protocols that are changing. And you hear about CTE and all of the like the athletes who are unfortunately dealing with CTE, we don't find out until after they've passed away, because you can't diagnose that pose, you have to diagnose that post mortem, right? And basically, what that is CTE and concussions are various levels of traumatic brain injury. Right? Concussion is a mild traumatic brain injury. And so we don't really think about it in those concepts. But basically, that's what that is. And so these athletes who are dealing with CTE and are having these mood swings in these Clarenville, irrational behaviors, and all of those things that are happening, that you are seeing more and more on the news. They are walking around with a TBI if that's what their family members are having to deal with. And that's what they are dealing with every day.

I think for me, when I when I'm thinking about traumatic brain injury, I, my first real exposure to it was I think it was several years ago, when when when Will Smith did that movie concussion. And, and you and you're in and he was kind of telling the story about no just things that were going on in NFL, and how people weren't listening. And and that that really caught my attention. Because it's like, no, I'm obviously you are too. We're both big sports fans, and we really get into that. But that, but I thought until that movie really came out. That wasn't a normal part of our everyday discussion about things, you know, because when you think about, like you say, A concussion is considered a part of a traumatic brain injury. But we used to get a concussion to kind of shake it off, and you move on now. And you don't really think about the long term effects that can have on individual.

Absolutely, absolutely. And I can even personally say so part of part of like my clinical history, so I spent half of my career working in college mental health. And I would for some reason, it seems like, for some reason, in the agency, it seemed like I got the majority of these particular students that were like former soccer players and football players, and they get to college. And they were having a lot of issues. And then we have conversations about what their concerns were when these concerns started. And then getting a little bit more history. And just hearing like, Yeah, I had like five concussions when I was in high school, because I played soccer, just thinking about a ball coming towards your head at 40 or 50 miles an hour. And that's a part of the game. And then we know about football and you know, helmets and how helmets are evolving to try to keep that from happening. And the protocols that are being put in place now that wasn't in place 510 15 years ago to assist with keeping concussions from happening. But now they're showing up in our counseling office with XYZ concerns that look like a lot of the mental health concerns that we're trained to handle. But it's not that right. So

and that's and to me that like I said earlier that there's definitely a gap to where I think we're experiencing right now in in in education and in training because we're as counselors, we talked about the brand all the time, but this was to me this thing like this is a topic we don't really get into and spend that much time about it. And we might see in a research but like as an A class Alexa, I can't remember a class ever really getting deep into talking about that. And I hate to even say it as a counselor educator, I know what the when I'm teaching it, it doesn't really come up in my conversation. Anybody needs to?

Absolutely it doesn't. It absolutely does. Because again, these are the folks who are walking into our counseling office, and we're trying to formulate a diagnosis come up with a treatment plan. And we are trying to, even if they are not willing to go the medication route, we're trying to help them. We're trying to help them do the small things to that we know would help with depression or anxiety. But if the person like physically and cognitively cannot do these things, because of a past injury to the brain, we need to come at it in an entirely different way. So yeah, so I can honestly talk about that piece all day. So yeah,

so what So what would we at the time, so like, what? So what would be a couple of things, you would say that, we need to know that that will be the way to approach it?

Yeah. So one thing that I would say is when you are doing your assessment to ask those questions, right? To talk about so we, when we do whether it's a mental status exam, or you are doing your assessment, and you're talking about the frequency, and like how the amount of time this person has been dealing with these concerns, go back a little bit farther and do some more history, you know, ask them questions about have you ever had an injury to your head or to your brain that anyone has told you about? You know, asked about them being former athletes, motor vehicle accidents, especially if you're working with younger populations. So what we know what the research tells us is that 70% of the people in the world who have TB eyes, it happens between the ages of 15 and 24. That's right smack in the middle of the age range that if you're especially if you're working with college aged kids, that's where you're going to see them, right. And so it doesn't mean that if you're 40 years old, that you shouldn't ask these questions. What if they had a traumatic brain injury when they were 24 years old, and they are just been dealing with these issues this entire time, and now is starting to call issues with work in relationships and all of those things. So you need to ask those questions about, again, motor vehicle accidents, athletics, like sports, any type of head injury, even if it was, it could have been a fight at a bar, and the person fell down, hit their head, right? Any of those things, because it could help provide some explanation about why the person is having these concerns. And then you would have to then approach it maybe in a different way. Or even have to bring someone like a neurologist into the mix into the treatment team. And sometimes we don't necessarily use neurologists, as a part of the treatment team is usually the therapists, you know, in the psychiatrists, but this will be a time where you would need to work with a neurologist to assist with this, that

multidisciplinary team because it becomes very, very important to make sure that even though we may not be used to having like a neurologist or somebody as a part of that, making sure that they're a part of that team too,

right. Absolutely. Absolutely.

And I think in this from this some experience I've had, I'm not sure why it is, but there's this seems to be a hesitancy to bring outside individuals in on these cases. But but it's needed, though. It's like so like, yeah, we talk about the brain, but we're not trying to like actually actually look and see the brain. So when you have someone who's kind of rather who's trained for this, like, to me, that's like a really good partnership to be able to have that you can be able to provide the right type of services for individuals.

Right, right in. I've had to refer out to neurologists, especially if they told me that you know, yeah, I played soccer or play football. All through you know, since I was a kid and you know, this is not happening to go and get an evaluation to get it rolled out. That it is this whatever is happening here is not related to a past mild TBI or concussion or something along those lines. And then you can work with more in line with what we'd normally do with someone who has a mental health concern So, but don't be afraid to broaden out the team share the love, you know, the, the multidisciplinary team. It doesn't have to be just you and a psychiatrist. It can be other medical doctors, neurologists, to kind of help you to suss out what the root causes so you know how to best treat the client?

Well, I know one of the main reasons I wanted to have you on the podcast today, is that no. Obviously no counselor, educator, you've been in the field a while you do in private practice, and you've worked with a lot of clients as well. But I know for you traumatic brain injury is like a personal topic. And so I'm glad that county can open it up, you kind of share with the audience kind of some of your your personal experiences with traumatic brain injury.

Yeah, yeah. So you know, it's it. People say this all the time, about a lot of different things about a club that you don't want to be involved in. For me, that's kind of a little bit like that. I do have a family member that suffered a TBI in 2019. And I along with my mother and her mother, this is my cousin. We are her primary caregivers. And so her TBI was the result of a motor vehicle accident. She was 20. So she falls right smack in the middle of that. The age range, we just talked about 1515 to 24. And we have been living this for the last almost four years at this point. It happened in August of 2019. And it has been a roller coaster of emotions and lots of learning that has come along with that. This her accident happened about a year after I completed my dissertation, when I completed my dissertation, I said I don't want to research anything, at least for two or three years. And then like a year in two months later, her accident happened and I found myself basically doing a crash course in everything TBI, because it is something that as a even as a professional helper, and a lay person that we just don't know a lot of bout. Right. And with my cousin, her name is Brianna, you know, you know, hey, Bri, you know, she, her brain injury was severe. And honestly, for several weeks, in the months after her accident, it was she's not going to make it. If she were to make it. You can expect nothing like it was just like it ranged from she's not going to make it to she may never wake up she if she does wake up, she won't recognize you. If she does recognize you, she won't be able to do anything with that information. It was a lot of information. And for a family who has the initial after the accident, who was trying to like figure out what's happening, what next steps are hearing those things. And not even knowing what people are talking about. Like at that point, like who generally knows the difference between a coma versus a vegetative state versus a minimally conscious state? No one like you know it fantastic, I'm glad and light and what makes some persons transition through that transition from one stage to another. And you just have to learn it, you have to know what that is to be able to explain. Yeah, I saw this is this, you know, to be able to explain to the doctors and the therapist and the surgeons about what you've seen. And that's kind of what my family has been going through over the last three and a half years. It's been a lot of lows, but also lots of highs as well. And it's it's crazy amazing, but it's also a lot of work.

And it sounds like from what you're saying. You kind of basically woke up in this new world where you had to figure out everything and figure out everything quickly because there was not there was not time to stop and like really like frost says everything if that makes any sense.

Yeah, yeah, it was not a lot of time to process. Anything, anything at all, like, we literally got the phone call that she had been in a motor vehicle accident, she was an emergency surgery. We had to go to the hospital and try to figure out a what happened. And then for them to kind of come and give us like all of this information. You know, she just, and I know that they were speaking their language. And even when they tried to break it down what it meant, like she came in, and her GCS score was a seven, and that severe. And this means that I was like, What is a GCS score, and I had to do like a crash course and Glasgow Coma score it, it basically is something that is done within the initial X amount of time, at the beginning, so after the incident happens, and depending on how the person scores is giving you an idea of the severity of the brain injury, and it also kind of leads into what the outcome of the prognosis is. But even that isn't even exact science, right? And so, I'm so thinking about that happening, you know, at one day after this major incident happened, and you know, that life is not going to be the same for you, or for your loved one. Mm hmm.

So the almost like a non note, you mentioned about the the roller coaster of emotions, they kind of go along with that. And also the learning that's going on with that. But then you said it's but it's a transition, though, to that, that you that you're value, like better than never ending transition, because I'm assuming things can constantly change.

It does it, things constantly change, especially early on, and then things plateau. And then you see like a pop of like improvement, and then it's a plateau where nothing is happening. Sometimes you even see some regression that happens. And so it is very much like an emotional roller coaster, you you see the small glimmer of hope type things that happen. And you want to grab onto and be like, yes, maybe she's turned the corner. And these things are now happening. Because basically what the idea of it is, is that our brain has the capability of like regenerating, and things that maybe you can't do right now you can do over time. And so, and after you get through certain stage, like the vegetative stage and the minimally conscious state you have certain expectations of things that could happen, but may not happen. And so, you know, but unlike in my cousin situation and Brianna's situation, they said that she would never wake up well, eight months, she woke up, she was in a minimally conscious state, she was able to, to, like follow sounds in and be able to listen to to people's voice and recognize if you could, can you look right towards your mom's voice and she can transition her head, right. So that was something that they said that she could never do, but she was doing it right. And so there's still some limitations, like she's unable to speak, she has aphasia, which no idea what that meant prior and all of the different types of aphasia. But you have this little small glimmer of hope things where we thought we heard her say mama like two months ago, and we were all excited about it, and then nothing. And then like no words and you know, and it's just like, well, thank God, we just imagined that we heard that right. So just thinking about that as a caregiver, about like seeing the small little glimmer of hope things and then having it down even if it's for a moment, right because your family member isn't able to to recreate that same thing over and over again. So when we think about speech, we can talk and if I say one word, I can say it again. You know, she may or may not say that ever, or she may say it tomorrow, we just don't know. This might be

We have a personal question, but how do you deal with the, those those those sparks of hope that you do said? Yeah. Because? Because I feel like it's because of where those come. And it's, to me it sounds like okay, it's, it's almost like opening a door up. Okay. This, this could be a possibility. Yeah. And then then nothing changes,

nothing changes. Yeah. It's, for me, it is what they say for me, for us. And I think this is something that my family has just kind of decided for us in those moments, because there's been so many of them, like, it's been so many of them for, for a variety of different things. We live in the moment, we celebrate the moment, like, I wasn't there, when she said Mama, like when she was trying to she said it, you know, very much like a child with learn how to say mama. Um, but we all celebrated her. We, because we want her to not feel defeated, because she can't regenerate that word again. Or if she's trying, she can't physically do it. So we celebrate those moments with her. We celebrate those moments together. And we are thankful for those moments, even if she never says another word again. We're thankful for that hint that maybe something is possible. And I know for some, it could be really heartbreaking to think about that. Like, you know, she said one word, and she's never gonna say anything else. But that's kind of the reality that we live in. We don't know. And,

and as I'm hearing you saying all that, in my mind, I'm thinking, there's some beauty in that to being being able to celebrate with somebody with something they've not been able to do for a long time. So yeah, that's, that's interesting.

Yeah. Yeah. And, you know, when I've talked to people about it, and it's, it's not a secret, like, I'm very vocal about, you know, my cousin and her injury and the things that she goes through, and and I tell people, and I think this probably really resonates with people who are in the helping field more than anyone else. It's like going through the stages of grief all the time. And it is, and I even still, even as a clinician, I still find myself doing it. And I can recognize it. Like there may be times where I could go on social media, and I would like see her friends who, who she grew up with, they're the same age. And they have finished college now. They have started their careers now. And they are getting engaged. So she's 25. She just turned 25. Last week. Sorry, she started 24 Last week, as her whole year she started 24. Last week. And, and just kind of thinking where she would have been if that incident didn't happen. So it's like grieving the loss of potential. Because she was definitely on her way. You know, she saw her accident was in August of 2019. In May of 2019. She had just graduated with two associate's degrees, she went to community college to play basketball, she was an athlete. And her accident happened three months after her graduation. And she was in the process of making the decision about whether or not she was going to go the college route to be a nurse or if she was going to the Air Force. And just thinking that if that they did not happen if that incident did not happen, that most likely she would have been in her career, probably, you know, a traveling nurse, that was something that she was really interested in, she wanted to be a helper as well. And so finding yourself being angry, that happen I'm finding yourself going through the you know, the the denial stage and sometimes that's like saying, you know if this this and this didn't happen or if this worked better, or you know, sort of like running off the road, she would have just done this all these things that are going through your mind and just the grieving the loss of the things that you're missing like I found myself missing her voice a lot. And it's like the never ending grief process. But at some point in time you accept that this is reality. And then there is hope that there's going to be improvement in the in the future. And that's what you hold on to. Because when as a caregiver, when you are kind of eating your feelings and your emotions, it also trickles down to the person that you're caring for. And that's not ever an experience that I want to lay on her, I don't want to lay those burdens on her a feeling the ways that I'm feeling right, so.

Wow. And, and, and I really appreciate that you like just just you kind of kind of talk me through all that. Because it seems like for someone who is a kid, there's a caregiver. And this isn't this, this build a big emotional piece to this, that you don't, you don't get a choice to escape from, you know, like so. So if we look at other other situations where I may have some anxiety about a certain situation, that situation can kind of come and go and I can that anxiety can kind of go away, or I might be in a temporary situation where I'm dealing with some depression. And I can deal with that and go away from it. But this is a situation where like, you, like you say you have to be okay with living what when I shouldn't even say Be okay with it, you'll have a choice but to be in that.

Yeah, yeah. And I think that's true for most caregivers. Right. That you sometimes and I think that even sometimes lead to like the burnout that we talk about with caregivers because it's an emotionally and mentally and physically taxing. To have to be responsible for someone's daily care. And that's kind of the situation that we're in because of the severity of my cousin's brain injury that we are that we are responsible for her all her needs, right. And like I say, they could be mentally, emotionally and physically taxing on a caregiver. But the interesting thing about like TBI versus let's just say some other medical concerns, okay, let's just say someone who has like cancer and a terminal illness, right? You kind of know that, how this is gonna play out for a terminal illness, right. And even though they have some good days, you can kind of see what's coming. With a TBI you really don't know like, you really don't know if this thing is going to turn around and improve or this is going to be what this is for X amount of time. And especially for those caregivers of folks with TBI who fall into that 15 to 24 category. Sometimes these, the TBI survivors even outlive their caregivers, and having to have those conversations about who takes care of them after the fact. Lay so she's 24. Now, her mother's and her mom and dad or they're in their 60s. Right? And so what does that look like? When the inevitable happens, right? And so it becomes one of those situations where it impacts the entire family, entire family versus someone with a terminal illness, more than likely this person is going to succumb to the illness before maybe the caregiver also, you know, passes away I just think it's sometimes it happens in reverse, but but just thinking about the longevity of being a caregiver, for someone that is in that position.

something and something you just said, that kind of hit me as you were speaking. You're talking about the fact you know, they know they could outlive their caregiver. And not I don't think sometimes there's a misunderstanding that people don't realize, okay, the person has a brain injury, and they can still be physically healthy. Otherwise, everything I mean, like in great shape, no other medical issues or anything like that. It's just that there's an injury with the brain that affects obviously the physical Yeah. But they're physically healthy and so like so that that That's become like, it's not an individual thing, it does become like a family concern because like, if I can say that the Mekong River, they're no longer around, who will be the next person to step in and the helmet and all that, and all day at a place where they're able to do that?

Yep. And it's funny that you say that about the brain injury and how it affects the entire physical. But it's weird that I will even say this as a person with as much education that I have. It was like, who knew the brain did is listen to this. This is what I tell myself all times. Like the brain is an amazingly fascinating organ in your body. And it impacts everything, everything, right? And an injury to that can make things that you never even thought about. hard for you. Right. And to what you were just saying that even in my cousin situation, and ironically, when she had her accident were two other two other patients that were in our hospital with a TBI at the exact same time happened the exact same week that she had, and they were all within her age range. And the when they were telling us that she wasn't going to make it and encouraging us to remove life support from her that they thing that they were saying was from the from the brain down, she is totally fine. Like she has no other injuries. All her organs are working perfectly. It is just the brain. And they were trying to encourage her us to donate her organs because those were 20 year old perfectly. You know, she wasn't a drinker. She wasn't a smoker, perfectly fantastic. organs, which I'm not saying anything about organ donations. I am a registered organ donor. But it's just interesting. Again, how that one injury to that one Oregon can be this lifelong recovery that you have. Yeah. But it's it's the the reality that we live in.

is in a house or second house thing? You said one thing about them? The basically there was like a push by, I don't want to putting words in your mouth for about organ donation. How did that how do you how do you maneuver through that when you have a loved one, you know, is this this this that is had that as not this, this this injury? And then you have the other side of the medical professional telling you hey, this is what we need to

do? Yeah. How are you?

How are you? How are you able to maneuver through that

lesson? That was probably probably the hardest few days that we had in this whole process was those first three days. And it was it anchored. It was a lot of anger there. So we talked about the states agree. It was a lot of anger there. Right? Because we're still reeling from, you know, we're bargaining we're praying, you know, I'm Christian, my family's Christian. So we were doing a lot of praying and a little bit of denial because that this is happening like how this can this happen to her to us all these things and then we're hearing the people who are the professionals in this situation people who know about brain injury saying you cannot expect any of these things to happen. So your best bet is to just let so the words that were used let nature and I'm using air quotes take its course you should you know this talk a lot about quality of life. And I guess this also goes back to conversations that you need to have with your loved ones about what their wishes are if something were to happen like this right. So whether it is a medical concern, a terminal illness or an accident that leads to a major injury like a TBI, you know, do you want to be on life support? Are you do you want to continue to be around if you can't do X, Y and Z things. And but we wanted to because it was so early on and they really couldn't. Again everything that we were reading was saying TB eyes are one of the you really don't Don't know what the outcome is going to be there, there's a possibility for this thing to happen. But it's also a possibility that won't happen. We wanted to give her enough opportunity to improve to where she could. And so we made the decision. So I said, there were three families who were also dealing with the same thing. At the same time that we were, we were literally in the same space, basically camping out together, because we were all there. And all three of the families were told similar things. And once family actually did decide to remove their family members from life support, the other two, our family and the other family made the decision that we wanted to give them a fighting chance. And so that's what's happened.

But in that moment, it was like, Can you give me a second to breathe to think?

Can you give us a little hope here? Because again, you know, she nowhere near 100%? No, and isn't even close to 100% of where she was. But the things that they told us that she couldn't do, she's doing some of those things. And but we would have never had the opportunity to live that experience, if we had, you know, just kind of said, Okay, you're right, let's let's just go ahead and move forward with removing life support. And honestly, we did not think that that was something even though we hadn't had the conversation with her previous to that. We did not feel that that is what she wanted. She did. She wanted to fight through it. And she's doing it every day.

And the more I hear your talk that I think the the the the terminologies come into my head, it does resonating is certain uncertainty.

That's exactly what that's perfect. Certain uncertainty. Yeah. That's exactly what it is.

You go into the situation, knowing that you're not going to know. And yeah, and I guess as soon as you get to a place where you can, except that this that we're not going to know anything. Mm hmm. I guess the quicker you get, the better, I'm assuming?

Yeah, yeah. And so it is kind of that sort of tracking into like a counseling lesson here. So talking about the difference between the stages of grief, five versus seven stages, in that new were stages that are like hoping acceptance, that's kind of where you are, you hope for the best, but you accept where we are. And it is hard for someone, you know it. For some families. Again, it's one of those situations where you it's like a club you've never really never wanted to be in. But now you're here. So we we do visit like support groups out here. You know, a lot of families who are dealing with that you may see their stories come across social media, or the news and you know exactly what they're going through in that moment. And then you see them six months from now or a year from now, either they are come to that point of that hope acceptance or they're reeling. And you want to be like, listen, hey, I get it. But even in that situation, every TBI looks totally different. I've known some people who've had a worse, like a worse prognosis than my cousin, and is now doing the things that we're wishing that she could do. So that certain uncertainty is absolutely the case. But even like, kind of pulling this back into what that looks like for a counselor, how do you treat a client where you're just like, they, they mom with the word mama yesterday, I was so excited. And then two months from now, they're just like, I hadn't they hadn't said anything. And now I'm back in that low place. Right? And you really can't. How do you tell them it was like, it's gonna get better. You know, can you say those things because you really don't know. And so it's it's a really difficult population to kind of work with. On the counseling side, because especially if you don't know, the culture and you don't know, in the client can even tell you really what the expectation is.

This seems like a very kind of like a natural transition to another question I have for you. So like, for the everyday clinician, you know, this is out there working with, with with families, with caregivers with individuals with traumatic brain injury, what would be I mean, what would be two or three like, things you would tell therapists a bit to be mindful of as they're working with caregivers of TBI?

Yeah. And so I think the one thing that I would say is going into that conversation with your your client, basically telling them, Hey, I don't know a lot about TV is, you know, giving them the space to kind of inform you about what they know, not necessarily saying that they should give you a crash course on all things TBI. But even if I tell you my definition of TBI, and what it looks like for my family member, it does not look like for the next caregiver that's gonna walk in the door. I'm having them to kind of explore and explain to you, you know, what their process has been like, right? And learning about their, their, their loved ones, right? Even though it's hard to talk about your loved one, especially like in past tense, when I was kind of giving you the background of like my cousin and things that she was doing and what that would look like what her future plans were, it's hard. But I also have to remind myself of, she's an actual person she had an actual life, she has an actual life, right? And helping them to kind of process through that. And I know I probably said stages of grief about nine times during this conversation. That's real. That's real deal. And when your clients are coming in, they may not even look at it through the lens of grief and loss. Honestly, even when I have a conversation with my aunt, my uncle, her parents, Brianna's parents, and my mom who's also her caregiver, and they talk about their feelings. They're not looking at it through the lens of grief and loss. They're just like, oh, man, I saw a photo of her ex boyfriend and he is living his best life. Or I saw a photo of one of her best friends and they're living their best life. And I'm angry. And I was just so upset about it for some reason, right? And then talking through with them about there's this there's a stage of grief, there's a stage of loss. That's what we're dealing with right now. And so maybe helping them to recognize that this is there. There's a normalcy to that. That piece and even working with them through the lens of grief and loss. And just being like a listening ear. And so I know that as a counselor we often we often I snicker because I do this too. As a counselor, talk about self care. Self Care is hard to come by with being a TBI caregiver for a number of reasons. One is generally a lot of there's some depending on where you are, there may or may not be a lot of resources for like respite care. And even if there are respite care. Some respite care providers really don't even know how to deal with TBI. Anyway, they know how to deal with stroke victims and in people with other medical concerns. But it's always some nuance about TB eyes that make it a little bit different than working, you know, respite care with someone who has another medical concern. So be mindful when we were pushing self care that self care may not look like what we envision self care to look like. Yeah. And also, maybe also kind of speak to allowing others to help. And I know this has been a little bit of a struggle, not only just for me, like I said, we had, we do attend some support groups. And we hear this a lot. That because there's so many nuances with this particular population, that is hard to train someone like another family member, said know how to take care of a person with a TBI. But everyone needs to have some kind of involvement. Because again, we don't know who's going to outlive who we don't know what the circumstances are going to be down the road where someone has to step in, you want to make sure that person is knowledgeable about your, your, your loved one, just in case they have to step in to take over. It really does take a village,

I feel like sometimes it is hard for individuals to ask for help just in everyday situations. But when but when you talk about serious situation as serious as this, it gets even more comp are meant to be, it's even more complicated to get the baby to ask for help, because, and correct me if I'm wrong it because it's your it's your family member. And it's like and so, so having to ask somebody else to kind of step in and help. That problem takes a lot to do that.

It does it does in depending on kind of where your loved one is like so if you know, I've talked about the severity of my cousins, but there's other people who are kind of in that middle stage where they are, they're mobile, and they can talk and they can get agitated and angry and even lash out in E even have like a lot of aggression. And that can be really scary for someone who hasn't seen it right. Or if this doesn't look like the person that you used to know prior to the accident. And it can be really jarring. And so that's why I said it's important to be able to train to bring in other family members, friends, that you can help them to get used to the loved one and how their you know their emotions and their physical and mental kind of ebb and flow. Because you will need a break at some time. Even if you don't want one, you need a break. And but you also don't want to take the anxiety along with you on your break because you just don't know what's happening with your loved one. And even if you do if you don't have that care, and you decided to do the respite care route, start doing your research ahead of time asking questions going by the facility or even if there's someone that's coming into your home to do respite care, learning about what they know about taking care of someone with a TBI. And so it's kind of like having a contingency plan for not if you need it, but when you need it.

So always preparing because because of that certain certain, right,

that certain uncertainty, yeah, I'm gonna call it that. So if you see it somewhere, just just don't say that you said that this all mean,

this will be copyrighted. And I'll take you to court over that. I just want to say, I have thoroughly enjoyed talking to you today about this. I know this is a it's a hard topic to talk about, in general for a lot of people, just because a lot of emotional. They're attached to it. But for you to come on today, not just talk about traumatic brain injury, but to also share your experiences with your own family member. And it's not and I know I've known you a long time. So I noticed that this is a very personal topic to you so last one this once I thank you so much for this being just open and sharing this with me because I just I feel like this is something that people need to know more about. And I just, I'm just I'm just I'm thankful for you and thankful that you can bring some a little bit more clarity for people who are going through this because like you said, it's not it's not something everybody understands, and likes, it's not clubbed anybody wants to be in but if your next love happened that encouraged and I think it's really important, so so thank you. I really appreciate you.

Yeah, thank you for having me and allow me the platform to speak about this because I do think it's really important for us to get the word out and for our mindset to change about how we are educating counselors to help caregivers. Mariela

won't be able to have you back again. Some of the time we'll, we'll talk about something a little more cheery. pletely different, completely. Thank you so much. Thanks

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