Tsgoyna Tanzman is the author of the Caregiver’s 12 Week Journal & Workbook designed to help stroke caregivers support themselves while caring for others.
Previous Interview with Tsgoyna Tanzman on Episode 236
Hope After Stroke
Highlights:
01:01 Introduction
04:48 The death rate for caregivers and the challenges they face
17:19 Privacy issues in the hospital
24:35 There’s no line between the caregiver and stroke survivor
29:54 The Book Hope After Stroke is for anyone and everyone.
37:03 How traditional news channels impact mental health
48:53 The importance of having a dream break
54:24 A shift in priorities, value, a new purpose
1:02:13 A shift in a caregiver mindset
1:17:57 How to get Tsgoyna Tanzman’s books
Transcript:
Tsgoyna Tanzman 0:00
I’ve worked with a gentleman who was caring for his mother. But he was a guy in his 70s who was living with his mother. And he was like, I am the only one, I have to take care of her. And as we worked for a certain period, we got to find out the value that he was finding from that.
Tsgoyna Tanzman 0:18
And he switched it to, I get to take care of my mother. And I get to give back to her, I get to appreciate her in a way and it just shifted the stress level for him and the resentment that he had towards other people. And we have to do it in a context that feels real. We’re not going to say to somebody, Oh, I get to, you know, wipe his ass. Yey, that’s so much fun, right?
Intro 0:48
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after a stroke.
Introduction – Tsgoyna Tanzman
Bill Gasiamis 1:01
Hello, and welcome to episode 256 of the Recovery after Stroke podcast. Rejoining me on the podcast today is Tsgoyna Tanzman, who I first interviewed on Episode 236, which was titled Some Much-needed Hope After Stroke, focusing on stroke survivors. Whereas today’s conversation is all about the journey of the caregiver. Tsgoyna Tanzman welcome to the podcast again.
Tsgoyna Tanzman 1:29
Yeah, I’m so happy to be here.
Bill Gasiamis 1:33
Me too. We had a lovely chat last time. Last time you were here. It was episode 236, I believe. And we spoke about a holistic approach to recovery. And we spoke about stroke survivors. And I’ll get it out of the way early, I bragged a little bit about how you’re the real deal, you get it, you understand what stroke survivors are going through.
Bill Gasiamis 2:08
And that’s rare to come across even somebody who is seasoned in their support of stroke recoveries in the work that they do, because they’ve never had a stroke, thankfully. Often, they don’t particularly understand some of the more nuanced issues that stroke survivors go through. And when we spoke for Episode 236, I labeled the podcast “Some Much Needed Hope After Stroke”.
Bill Gasiamis 2:46
And we must provide hope after stroke, we provide a vision of the future for what recovery could be like, and we give people the opportunity to get through the really tough times of acute stroke recovery, and early stroke recovery. And then we hopefully support them and guide them gently through all the stages and then say a decade later, they come to the other side.
Bill Gasiamis 3:15
And they may have been I’ll use a pretty Australian term “banged-up” because of stroke, you know, they might have had deficits that they have to deal with might have had vision issues they might have who knows what they’ve got to deal with. But still, a decade later, life might have moved on and continued.
Bill Gasiamis 3:36
And while this is a recovery after-stroke podcast we’re talking about stroke survivors and their recovery, what we don’t do enough of is talk about caregivers. Caregivers get the harder part of the deal in some scenarios, I believe, because they have to put their own life on hold and care for somebody without any skills, any training, any degree, or any certificate on how to do that.
Bill Gasiamis 4:15
At the same time, they have to handle their emotions, their emotional state, and their own needs. And often they neglect all of that they let go and all they do is focus on the stroke survivor.
Bill Gasiamis 4:33
And I think there’s a statistic about but I don’t know the number exactly, but I think it is the people who are less likely to pass away after caring for an ill person in their family is the caregiver.
The death rate for caregivers and the challenges they face
Tsgoyna Tanzman 4:48
Yes, it’s true. Yeah. And there are some pretty sobering statistics about that right? 30% of caregivers die before the person that they’re caring for. And they have a higher rate of death like a 67% higher rate of earlier death than the average population that’s not in a caregiving position.
Tsgoyna Tanzman 5:21
And I will tell you that when I have said that to some caregiver groups, I have had, some people get pretty angry at me. And they didn’t want to hear it, and I think one of the reasons they didn’t want to hear it is because they felt like, there was no way out of that. And I believe that there truly is, they don’t have to be a statistic.
Bill Gasiamis 5:51
Yeah, burying your head in the sand doesn’t work, regardless of what the situation is, whether you’re denying that you’ve had a stroke, or you haven’t come to terms with it yet, whether you’re denying all the things that you’ve put on hold your entire life to care for somebody who’s had a stroke.
Bill Gasiamis 6:08
Burying your head in the sand is not going to make it go away. I think it’s doing a disservice to you to bury your head in the sand and pretend that you’re not struggling because you’re a caregiver, and it’s okay to say if you are.
Tsgoyna Tanzman 6:26
Yeah, it does not help anyone. But I think that the resistance to acknowledging that is so fearful for some people, especially because, they’re fixed in their thinking about how and what they are expected to do as a caregiver.
Tsgoyna Tanzman 6:46
And, interestingly, you said people put their life on hold. And that’s kind of true, but not entirely true. Because the caregiver’s life goes on. There are responsibilities, there are things that are building up and not getting done. And all of that adds to an enormous level of stress.
Tsgoyna Tanzman 7:09
And I think that is one of the things that becomes a challenge. And so when you say to put their life on hold, you are meaning things like what caregivers do, which is not going to their dental appointments, not making their doctor appointments don’t get their hair cut, even simple things like that. Don’t attend to any of those personal self-care things.
Bill Gasiamis 7:38
Their dreams and desires perhaps.
Tsgoyna Tanzman 7:43
Yeah. Their dreams and desires. That’s why they’re not making it to a dental appointment when they’ve got a serious toothache. Yeah, dreams and desires are way at the bottom of the list.
Bill Gasiamis 7:59
I noticed that. I noticed that in my mother-in-law, who had a long time caring for my father-in-law. She went on an emotional roller coaster of feeling guilty about taking time out for herself because of the demands of her husband’s situation.
Bill Gasiamis 8:20
And then also felt guilty because she was frustrated or angry at the situation or him from time to time. And she didn’t have a lot of outlets, she didn’t have a lot of ways to I suppose deal with the emotional rollercoaster.
Bill Gasiamis 8:44
And she was very committed to supporting and helping him. But there was no one committed to supporting and helping her and even if there was, I’m not sure that she would have accepted the help and support.
Tsgoyna Tanzman 8:59
And that’s a point that I hear all the time, and you describe this kind of teeter-totter version of balancing between guilt and resentment, right, guilt and anger, guilt and then overlaid guilt that you were angry or resentful, right? So we get very meta here.
Tsgoyna Tanzman 9:20
And it seems like there’s no way out. Most of the time, in a situation where there’s a caregiver and or survivor looking people are always asking about the survivor. How are you doing? How are you coming along, and then the person who’s providing all their support, whether it’s the driving the feeding, the laundry, the transferring, the setting up of appointments, dealing with the insurance, getting the benefits.
Tsgoyna Tanzman 9:52
All of that is dismissed, and unappreciated often by the person, you know the survivor as well as any of the family members. And, you know, nobody is actually, I’ve heard caregivers say, nobody has ever said, How are you doing? How am I doing?
Tsgoyna Tanzman 10:15
And just want the ability to answer that question. And you’re right, a lot of times caregivers then take on this, nobody can do it like me. And that prevents them from moving on with any of their activities, whether it’s even a walk outside because they’re going to put their loved one in the care of somebody else.
Tsgoyna Tanzman 10:49
And on the caregiver’s part, there’s that “nobody can do it like me” I know exactly how my loved one needs to be toileted, fed, and dressed, and they won’t respond to you, the only person they’ll respond to is me. And that unwillingness to experience their discomfort in letting somebody else try something.
Bill Gasiamis 11:16
Yeah. And also, what I saw from the other end was my father-in-law saying, nobody else is going to come in the house to help. Because he was embarrassed because showering and toileting is a difficult thing to go through.
Bill Gasiamis 11:32
So he was put in that situation, he had no choice when she passed away. And even then, he wasn’t happy with it, you know, he, so to speak, went down kicking and screaming in that, you know, he tried to resist that as much as possible, it was his biggest fear.
Bill Gasiamis 11:53
And he overcame that fear when she was no longer around, and he was stuck. And he had no other way. You know, the family supported him as much as possible. But all the family members who supported him had their own lives, and I didn’t live in the house with him.
Bill Gasiamis 12:12
They’re all adult, people who work and have kids and do all that kind of stuff. So there was a real lack of support. And then there was the government, caregivers that made the transition into the house to support when they could, and they’ve been there for quite a while, and there’s been some adjustment, but that’s worked out.
Bill Gasiamis 12:36
But even then, when I noticed that even when caregivers, the paid kind have to be changed, or they’re different, or they get sent elsewhere. There’s even the same resistance to losing somebody who was a caregiver who knows the routine. And now there’s a new person and oh my gosh, now I have to tell the new person want to do it again.
Bill Gasiamis 13:02
So there were a lot of underlying things, making it very difficult for my mother-in-law to change this system and you know, she was in her 70s. So she didn’t have a lot of energy to fight and argue and all that kind of stuff. She also didn’t have the resources to do that. She didn’t have the support to do that.
Bill Gasiamis 13:25
We didn’t know that she needed to do that. It was such a challenging time. And now I remember often what it was like for my wife to go through the caregiving role with me and how difficult it was. And even though I didn’t need toileting and all those things. I didn’t make it easy, because I also didn’t know what I was doing. I had no idea what I was doing.
Tsgoyna Tanzman 13:51
Yes. And then we add sleep deprivation to that you know, whether it’s the stroke survivor that’s not sleeping through the night that’s keeping the caregiver up or just that every you know, both parties are having difficulty sleeping, it’s different. These are new adjustments. It is not the preferred choice for sure. Whether it’s having a caregiver shower you and bathe you and help toilet you are not the preferred choice, especially if a person has always been very private.
Tsgoyna Tanzman 13:53
And, yet there’s a great deal of surrender that takes place. A lot of times that surrender takes place in the hospital from the very beginning. You know, people are walking into your room I don’t know about in Australia, but here in the States I was very aware that you know, for the most part, professionals that are entering the room, don’t knock On the door even, it’s as if, like, there is no privacy.
Tsgoyna Tanzman 15:06
And, you know, from the nursing staff’s point of view, they’ve seen it at all. But a human is being there that has not been readily exposing their behind to people and having them wipe them. It is pretty damn humbling.
Bill Gasiamis 15:25
And I have a story about that. I went into surgery, I came out of surgery. And of course, one of the first things I want you to do is go to the toilet and move your bowels. And I couldn’t move my bowels because it was, you know, things weren’t working or whatever it was a couple of days after surgery.
Bill Gasiamis 15:46
And they gave me some oral what we call oral laxatives. And of course, they kicked in at some point. And when they kicked in, I couldn’t walk yet. I hadn’t been to rehab, I couldn’t walk. So I was in a wheelchair. And I was pressing the buzzer pressing the buzzer. And the nurse was busy elsewhere. And then I had to go.
Bill Gasiamis 16:12
And there were moments left, you know. So I dragged myself as much as I could out of my bed, which was a big no, no, I learned later, dragging myself out of the bed, positioning myself in the wheelchair, and pushing myself towards the toilet, which was just at the end of my bed, got to the toilet, opened the sliding door, went in. And I think I hadn’t started to move on to the toilet yet and I got busted.
Bill Gasiamis 16:43
The nurses came and said, Hey, what are you doing? I said look, I had to go to the toilet. I pressed the buzzer you didn’t answer, I understand. I needed to go so here I am. So just get me up here and let me do my thing.
Bill Gasiamis 17:02
And they said, no we have to stay in here and watch you. And I said what do you mean? No one told me that, I didn’t sign up for that, get out. No, we have to stay and get out. No, we have to stay. Please, please, please, I will not move from this location.
Privacy issues in the hospital
Bill Gasiamis 17:19
I will sit here I’ll do my thing. Just stay outside the door just please stay outside the door. And as much as I was busting the need to go to the toilet went away. Let me tell you immediately when somebody said to me, I’m gonna sit here and watch. Yeah. I mean, what do you talk about in those moments?
Tsgoyna Tanzman 17:45
Yeah, there’s so much about that story. It’s so interesting. First of all, there’s sort of a well-known joke, that if you’re in the hospital, and you want an hour of quiet, just press the call button. I’m sorry, to all the nursing staff out there, I do know that you have a very, very difficult job. But that does seem to happen a lot.
Tsgoyna Tanzman 18:13
And that’s a big complaint. And the whole thing about toileting on your own in the hospital. The greatest number of falls occur in the bathroom, and it’s the worst place to fall. Because the surfaces are hard. It’s most likely to have a head injury in that case. And you know the hospitals want to protect your safety.
Tsgoyna Tanzman 18:36
But yeah, I mean, that’s the first place you learn like, Wow, no privacy, all humility is gone. And everybody’s talking about how big your bowel movement was how many, like, All right, like you might as well just share everything get to know me. So, you know, there’s an interesting thing that just happened. I spoke with a caregiver about this man was in his late 80s.
Intro 18:36
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. How long will it take to recover? Will I recover? What things should I avoid? In case I make matters worse, doctors will explain things. But, if you’ve never had a stroke before, you probably don’t know what questions to ask.
Intro 19:31
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recovery after stroke.com where you can download a guide that will help you, it’s called Seven Questions to Ask Your Doctor about your Stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your Recovery, head to the website now, recoveryafterstroke.com, and download the guide. It’s free.
Tsgoyna Tanzman 20:09
He mowed his lawn working up until the time of his stroke in his late 80s. But he had a massive stroke he had global aphasia. So he couldn’t speak at all. He was paralyzed on one side, it was a severe stroke that affected every modality of communication and function. And he had some wounds on his lower back from being in bed for a very long time.
Tsgoyna Tanzman 20:40
His wife was in her late 70s, she was the only one he would allow to help. But she physically she would get in the shower with him. But he was a big man and slippery and resisted the shower, complained and fought and battled. And so when I started working with him, one of the first things I said was, okay, let’s give up on the fighting about the shower.
Tsgoyna Tanzman 21:10
Let’s not have him shower, don’t even bring it up for a while. And then, in the absence of that contentiousness family members started to get a little bit curious. And one of them said, Well, maybe he would like it more if it was warmer, right? So they brought in a little heater. So when he first came into the bathroom, it was better.
Tsgoyna Tanzman 21:35
And then they realized they had an even smaller shower. And he liked the smallness, like, the confining space. So it’s so fascinating. It’s like, what can we learn? Why is somebody so resistive? Can we take the time to find out what the problem is? And can we make that better?
Tsgoyna Tanzman 21:58
But when those caregivers are in that contentious state, you know, they get frustrated, it doesn’t work for anybody. So that’s just an example of that. But yeah, it’s not the preferred thing, to have somebody else shower you and toilet, you. But as we can see, when there was no other option, he did start to accommodate.
Bill Gasiamis 22:26
Yeah, I mean, it’s a big deal, you’ve lost all of your identity. And, now, all of your privacy happens, all at the same time. And it’s a big adjustment. I mean, moments ago, you had all of those things, and now you don’t, there is going to be a time of adjustment. Same with the caregiver, the caregiver, had a functioning family member, and now they don’t, there’s gotta be some adjustment.
Bill Gasiamis 22:58
And complications in the relationship may have just got more complicated, you know, all sorts of things. So I understand that whole difficulty in the complexity, I just feel like. And that’s why I love having these conversations because there’s more awareness needs to be raised.
Bill Gasiamis 23:19
And I’m not sure whether the caregivers who listen to this or the stroke survivors who listen to this will learn something and then feel like they can make a change themselves and accept something a little better, or look out for aid for each other, or whatever.
Bill Gasiamis 23:38
But maybe this type of conversation brings things into people’s awarenesses that we weren’t in our awareness before because, in a difficult time like stroke, a lot of things that should be in our awareness may have an even entered.
Tsgoyna Tanzman 23:58
Absolutely. And I think what happens is that you’re in a crisis. And so you immediately go to the doing part without examining your thoughts or your feelings. And often you’re fueling the doing part, whatever actions you are from feelings of resentment, feelings of guilt, feelings of fear, feelings of uncertainty, and none of those are the optimal fuel for the long-term kind of thing.
There’s no line between the caregiver and the stroke survivor – Tsgoyna Tanzman
Tsgoyna Tanzman 24:35
So one of the things that I decided to do after I wrote my book, Hope After Stroke for Caregivers And Survivors, which by the way, when I was writing the book, some of the editorial criticism, so to speak, we’re like, Well, who is it for? Is it for the caregiver? Or is it for the survivor? And I keep saying it’s for both like you can’t uncouple them, even people that are survivors that don’t have a partner that’s living there, there’s somebody that’s involved in their care in the beginning.
Tsgoyna Tanzman 25:15
And it’s like a dance I said, In the beginning, the caregiver is taking on more of the role. But we want that caregiver to turn back the keys to your life to that survivor, in the best way possible. So that the survivor is making the decisions, calling the shots, asking the questions, being involved in his or her recovery, and finding their way. So it’s a little bit of a dance with one leading, but then switching that off.
Bill Gasiamis 25:52
Ideally, yeah switching that off.
Tsgoyna Tanzman 25:55
Ideally, and I want to say something about that too because caregivers, in their desire to help the person, may often thwart the recovery because they’re putting the brakes on things that look to them, dangerous or compromised, or they that this survivor shouldn’t be doing their loved one shouldn’t be doing.
Tsgoyna Tanzman 26:25
And it takes a lot of courage. I mean, it helps if that person, those people have ever raised small children because those small children will. And that’s not to diminish what the survivors like, but those small children will venture out, they will try and climb on something, they will try and do something that scares the person you know, or when they get their driver’s license for the first time. And it scares the parent, in the same way that it scares the caregiver.
Tsgoyna Tanzman 27:01
They’ve suffered trauma, by the way, the caregiver has seen the survivor with all the tubes coming out with all the grim reports, with all the devastating things they have suffered from their trauma. And nobody deals with caregiver trauma, nobody, because you just jump right in and start doing it. But going back to this another thing is that inadvertently, to protect a loved one, they may thwart the recovery by not allowing them to give them extra time to transition or to speak and not speak for them.
Bill Gasiamis 27:47
Yeah, that’s, it makes complete sense. Adult parents do that with their kids as well, you know, I’ve certainly been the kind of parent who over-worried about something that was, you know, difficult, and as a result of that, probably put the brakes which was my intention to put the brakes on my child’s task or whatever it was.
Bill Gasiamis 28:19
At the moment, I time, not realize what the deeper issue down the track might be if I continued to play the role of putting the brakes on one of the tasks that my child wanted to do, which was quite and quite dangerous in my eyes.
Bill Gasiamis 28:41
And I see that with some of the people who I coach the dance between their caregiver and the stroke survivor, and sometimes the stroke survivor being unwilling to take on the next part of the journey and being comfortable to let the caregiver overservice if you like.
Tsgoyna Tanzman 29:07
Absolutely. And there’s technically a name for that. It’s called learned helplessness and learned dependence. You know, and, you know, we see that with dressing with eating with doing activities of daily living, that a person we want to reestablish their independence and create that but sometimes, for both reasons.
Tsgoyna Tanzman 29:36
It’s hard for the survivor to do something and, you know, they complain like, why aren’t you helping me and it’s hard for the person to sit back and say, this is what help looks like right now. Letting you do this on your own figuring it out.
Hope After Stroke by Tsgoyna Tanzman
Bill Gasiamis 29:54
Yeah. The first book you wrote, Hope After Stroke was the one that we discussed on episode 236. And you said there was feedback about who it was for. And there was a difficulty in people who were outside of your world, the amazing work that you do.
Bill Gasiamis 30:20
And my world, the stroke, surviving world to kind of understand who is a book for Hope After Stroke, it seems such a broad statement if we’re going off of Hope After Stroke, but the reality is, it’s for anybody and everybody. And if you just take the word stroke away, you can just put some other words in there. And realistically, the lessons from that book apply to anybody in any part of life.
Tsgoyna Tanzman 30:53
Yeah, I’ve heard that from so many people that have read it.
Bill Gasiamis 30:56
Yeah, they are right? But the problem with the work that you do, and the work that I do is we work with stroke survivors often. And we need to find our market. So what we do is we tune the wording, so that somebody who’s been in the situation of stroke, can very easily understand that it’s definitely for them.
Bill Gasiamis 31:19
That’s the challenge that I had with my book. Okay. So my book called “The Unexpected Way That A Stroke Became The Best Thing That Happened.” Okay, but it’s not about stroke. It’s about general things that happen in life for everybody, whether they’ve had a car accident, or a cancer diagnosis or whatever, a heart attack.
Bill Gasiamis 31:41
The lessons and the way that all the other stroke survivors whom I interviewed got to that stage was they went back to some basic fundamental things that people go back to when they need dramatic change in their lives.
Tsgoyna Tanzman 31:59
Yeah, you’re right. And these catastrophic events, it doesn’t matter whether it is a stroke, or whatever. But there are some fundamentals like you say, there are fundamentals. And there are things in my book that are very specific to stroke the language, for example, that you need to know because, as you well know, I’ve got a crash course, in medical language.
Tsgoyna Tanzman 32:23
As well as you I got a crash course, as soon as you enter the hospital, and all of a sudden, you know, are learning about brain anatomy, which, you know, five minutes before that was not on your game plan, right? Suddenly, you can read an MRI scan.
Bill Gasiamis 32:39
Yeah, you have to be able to communicate with the neurologist and the surgeon and this guy and that guy, and you need to be up for the task. And that’s kind of what the book does helps us to get up to the task of understanding your book, up to the task of understanding the things that we need to understand to specifically deal with stroke.
Bill Gasiamis 33:02
But if we just take out the anatomy of the head and replace it with an anatomy of the heart, and right heart attack instead of stroke, it’s a book for everybody. But it’s never going to be made like that you can’t build a book like that. That being said, there was another book that came from this, there was another book that this sport that I bought off the stroke spawned, and yes, which one is that? And what was the purpose of that? How does that fit into the picture?
Tsgoyna Tanzman 33:34
Yes, I’ll show it to you. It is for the caregivers, a 12-week recovery book, a 12-week journal, and a workbook. And the reason I wrote this is because I saw such a need for caregivers, to have some kind of a grounding element. And I knew it had to be something quick because they don’t have time to sit there and read. It’s not that kind of book.
Tsgoyna Tanzman 34:07
It’s very experiential. I mean, it starts by saying, the vast majority of it is a daily journal, which looks kind of like this. And it asked questions like, well, I love this because it works both ways for both the caregiver and the survivor in a certain way. It starts with the day, the date the month, and the year as a basic orientation.
Tsgoyna Tanzman 34:37
Because what also happens in recovery is people will say, I’m not making progress, right? Because they’re now three months down the line, but they forget what those first two months were like. So this is kind of a historical record, right? But it also starts with orientation. And let me You know, I mean, I think one of the dumbest questions that patients are asked when they’re in the hospital patients, what day? Is it? Because who cares?
Tsgoyna Tanzman 35:10
Like, I mean, every day is the same when you’re in the hospital. I think it’s the dumbest question to look at orientation. But once you’re out of the hospital, there is some regularity there is value to knowing what day it is.
Tsgoyna Tanzman 35:27
And did I take my meds? Is, asking the caregiver did I take my meds? Did I take my vitamins? Did I check my vitals? If you know, very often, that caregiver may also have a medical condition? So we want to know, did I take care of me first, I say to them, I say the caregivers, the caregiver caregivers, you know, if you’re about to go on this journey, do you think you need to put fuel in your vehicle? Right, and the fuel that you’re putting in your vehicles taking care of yourself?
Tsgoyna Tanzman 36:03
And so the first question I asked is, How do I feel? And you just get to circle a number? How do I feel 10 is great. And one is not very good? How is my energy that’s even different than how I feel? And then I love this question. So I love to give, you know, analogies. And I say to people all the time, when you’re baking a cake, what’s the very first thing you have to do? And people go, well get out the great ingredients.
Tsgoyna Tanzman 36:34
I said, Well, that’s great. That’s important. You need those ingredients, they would mix it up, I said, Well, that’s also important too. But the first thing you have to do is turn on the oven. You have to warm that oven to prepare it for accepting something to rise. And I like that to prepare yourself, you have to warm your internal oven, your internal spirit.
How Traditional News Channels Can Impact Mental Health for Stroke Caregivers?
Tsgoyna Tanzman 37:03
And when people say that the first thing they do is turn on the news. I go (beeping sound) back it up a little bit because that is a way to tune yourself to every problem in the world. Every disappointment, every negative thing, whether it’s the world economy, whether it’s defiers, whether it’s the air quality, whether it’s the catastrophes not to say that you want to bury your head in the sand about that, but don’t make that the first thing you do to set your day.
Bill Gasiamis 37:42
You don’t need to know about the collision that happened in the country. 12,000 miles away?
Tsgoyna Tanzman 37:50
Yeah, you don’t. You don’t need to hear about it every 15 minutes. I don’t know if the Australian news is the same, but it just runs on this loop. Yeah. So then I say, What do or can I appreciate? Sometimes the word grateful trigger triggers people to like, there’s nothing I can be grateful for. But they might say appreciate, like, can I appreciate like, a warm cup of coffee?
Bill Gasiamis 38:17
Having the same cup exactly as you.
Tsgoyna Tanzman 38:20
I know just think that’s so amazing, different continents amazing. Like thinkers. So that’s one thing. And then that’s the spirit part. And then the mental part is like writing a goal or an intention for the day. I am feeling what so that I Oh, no, I am doing something. So that I feel but honestly, really, I would change it. Now if I would do this again. It’s like I feel certain that I’m doing what, right? What am I going to do just one thing that would just be like, great, like maybe it’s, I am calm so that I can interact with my loved one without yelling today? I mean, that would be a huge win.
Bill Gasiamis 39:14
It is I have to say the thing you said about the news, the first thing in the morning, I don’t watch any of the I’m going to call it traditional media information type of networks at all. And the whole reason is because there are never good stories on there. You never hear a story of recovery. You never hear a story of overcoming you never hear a story of success.
Bill Gasiamis 39:40
You hear about the guy who failed the person who died, the person who was ripped off or something like that, and it’s and it’s a really difficult thing for me to have to do is to deal with the negative emotional states that cause me while I’ve, for example, had a bad night’s sleep because my left side was hurting and I couldn’t sleep.
Bill Gasiamis 40:08
So I’m already in a situation where I’m struggling to get out of bed in the morning because I’ve got a day to get to. The last thing I need is to bring my level of struggle higher. And to make it even harder by impacting my mental health and my emotional health negatively, by seeing the thing on repeat on the negative news, you know.
Bill Gasiamis 40:31
So I’ve got to say it’s something that I haven’t done for a very long time and you hear about the traditional news. Channels say, Well, where do people get informed from? How do people get their news and all that kind of stuff? It’s like, the book that you and I wrote, so my book is not out yet, by the way, in case anyone’s wondering, but your book specifically says, much-needed hype after a stroke.
Bill Gasiamis 41:00
The other one specifically says caregivers in the title so that people who have been through those journeys know that it’s for them, same with my book. But the news doesn’t bring us specifically the types of bits of information that we are going to benefit from and love to hear from, there’s no benefit in learning about the collision, about the drama in another country about the flood in another country.
Bill Gasiamis 41:25
You might think there is they might tell you that there is, but you little old, you’re living in the middle of nowhere, and benefit zero from that. So it’s like unnecessary news, it’s taking up space in your mind. Where the better thing to have in your mind would be what’s the great recovery story that I want to know about, somebody who’s been in the situation that I’m in.
Bill Gasiamis 41:51
And if you do a Google search, and you tell Google, I’m looking for inspirational stories on stroke recovery, they’re not going to bring you the junk that you need to get through to get to the inspirational story, they’re just going to get your inspirational stories. So if you choose you choose your words, and your searches wisely, and you want to get specific about exactly what you need.
Bill Gasiamis 42:19
I feel like a Google search with the exact keywords that you want to find, is going to specifically bring you that and then you can feel your day, and your brain and your mind. And you can use your energy in a way that’s going to support you, your caregiver, and the stroke survivor in recovery. And it’s not going to make you feel worse, it’s going to make you feel better.
Tsgoyna Tanzman 42:43
We have to be vigilant about our emotional well-being. And we have to choose the people, the language, the stories, the environment that supports that because you’re 100%, right like that. Another energy is depression, and you need all the energy you’re going to, get through recovery, you need it to be uplifted, you need to be spiraling upward, not spiraling downward 100%.
Bill Gasiamis 43:19
Your book there seems to be an amazing way for somebody to track how they’re going. And hopefully what it will do is say they’re tracking two or three days or weeks of feeling unwell or not having taken care of myself, hopefully, that gives them information to say, Okay, this is tracking a certain way, and I need to pay attention.
Bill Gasiamis 43:42
And I need to do something different. Because I don’t like the way this is tracking. I am clearly in a pattern that’s not tracking down a path that I would prefer for say, my friend of mine who was a caregiver, if I was noticing those patterns in that caregiver, I would bring them into their awareness, I would say Hey, this is what I’m noticing about how you’re going about caring for yourself. Maybe I need to look after myself.
Tsgoyna Tanzman 44:12
Absolutely. And that and we do we’ve got this like journal that shows that. And, then we look down at what’s today’s most memorable event or achievement. Look for evidence of small wins. So we’re getting to look at that at the bottom. It’s like did I ask him that question? Did I drink water? Did I eat healthfully? Did I practice mindfulness or meditate or pray? Did I move my body and exercise? Did I connect with the Community and practice self-care?
Tsgoyna Tanzman 44:46
Like all of those things at the bottom are the best health life-giving things that you can do. But you know, it’s interesting that you said if I was tracking this I might say something. And in fact, like for every week, in the end, there’s a list of questions to answer the questions. So this journal is, can, it’s interesting because it’s for the caregiver and part of it is self-reflexive for the caregiver.
Tsgoyna Tanzman 45:20
But because the caregiver is in a position to be responsible for another person, we want to keep a running record of questions. You know, like that, then when you go to your doctor’s appointments, like there’s going to be questions that come up all the time, and we forget them. We’re so busy. But if we have a place to jot down oh, there’s a medical question I want to ask, there’s a question about my, suddenly I noticed, you know, my loved ones dropping their foot, and they’re tripping.
Tsgoyna Tanzman 45:52
I noticed that they’re more agitated, or their speech is somewhat better than those questions, they can take a picture of that, bring the whole book and go talk to their medical provider, or talk to them on the phone so they can remember it.
Tsgoyna Tanzman 46:07
Because, you know, I don’t know if again, in Australia, but in the States, people go in and your luck, you usually wait an hour, and then you get a 15-minute appointment if you’re lucky. And it goes fast. And unless you’ve got your questions to ask, you’re gonna walk out and go, I shouldn’t have asked that I forgot.
Bill Gasiamis 46:28
It’s why I’ve got the download. People can go to the website, and they can download seven questions to ask a doctor after a stroke. And they may seem insignificant or minor or whatever. But the questions are simple. Where in my head is the damage? What is their part responsible for? And it’s probably not the best seven questions, but the questions that I needed answers to, but they are questions to start the conversation so that questions can then flow. And that you take the conversation in a path where you’re active in the conversation, rather than the doctor telling you all these things, and you’re just sitting there going, okay. And then we’re not getting much out of it. And then leaving not knowing also, one of the other amazing things is that I realized recently is you can now with a phone going in the record a conversation that you have with a doctor if you get the permission, of course, the member so that you can remember what the conversation was about because a lot of strokes survivors do not remember.
Tsgoyna Tanzman 47:33
Yes, it goes fast. I remember, you know, suggesting that to patients many years ago. Because if you go in there, and you’re already at a high level of stress, because of this event, we know that when emotions are high intelligence is low. And that’s for everybody. Like, as soon as they give you a diagnosis, most people just go completely blank.
Tsgoyna Tanzman 48:02
They just can’t process it. And so yes, bringing in your phone to record the conversation, asking those questions that you had put together, I saw them on your website. And they’re so useful because that starts to signal that that person is involved in their care and that they’re not just passive recipients.
Tsgoyna Tanzman 48:27
Because it’s your life, nobody should care more about you than you, right? And you’ve got to have those questions to ask, you’ve got to have a desire about where you’re going. And so there are other little things inside the book that are just, you know, helpful for the caregivers like inspirational things like you’re a human being, not a human doing.
The importance of having a dream break – Tsgoyna Tanzman
Tsgoyna Tanzman 48:51
And there we talked about dreaming right? There was a place here that was about dreaming. And I said time to dream Yes, you deserve to dream plan, and do as well and it was a dream break 30 things I loved to do love or love to do what I loved as a kid you know so often what happens is if there’s a caregiver that gets some time off, all of a sudden they’ve been in this routine for so long, they don’t even know what to do.
Tsgoyna Tanzman 49:26
So we want to give them that opportunity to say what did I love as a kid? What do I love now? What have I always wanted to try? Can I do something like that? And then planning that name one little thing in their weekly plan so that they do believe that they still have a life, whether it’s, you know, they want to go take a walk, they want to go to the mall, they want to have coffee with a friend.
Tsgoyna Tanzman 49:56
They want to get their nails done or you know To play a game with somebody. So those are some of the things that are in there. Then I like to look at this evaluation. And this is where the caregiver can discuss with the survivor. What went well this week? What can we improve? You know, like, you’ll notice as you’re doing it, you start, nobody tells you how to do this. Like, it’s, it’s like bringing a baby home for the first time, except there’s a lot of books about that.
Tsgoyna Tanzman 50:36
Now, all of a sudden, you’ve got to adult to know like, what, what, and some of the stories are funny later, but some of them are, are trying. So you’re always asking, like, what went well this week? What can we improve? Do you know, when, who, how, or what can we do to make things better next week? So like one small thing, and it gives us a direction, just one little thing, not everything, one little thing. But it all started back with what you said, We’ve got to elevate the awareness. First of all, this isn’t just automatic, we are elevating our awareness.
Bill Gasiamis 51:17
Yeah, it’s awareness is probably one of the key things because it’s tied into mindset, I think. And if you can bring the right awareness, then the right mindset kind of kicks in. If you’re not aware of the things that you’re doing to start your day, or negative news cycles, then it could impact your mindset for the day.
Bill Gasiamis 51:37
You might not be aware that your mindset has been impacted negatively, and that you feel negative about the world or the situation or whatever, because something has happened that you’ve done, just out of habit, which allows somebody else to control the narrative in your mind, because you switched on a certain channel, on, on the news, on the radio, or wherever.
Bill Gasiamis 52:02
So I think it’s really important to protect your mindset, with awareness. And becoming more aware allows you to put barriers around your mindset so that you can choose the mindset you’re going to have. Well, the first chapter of my book is about mindset. So you can choose the chapter and the mindset that you’re going to have and run with it. And hopefully, you’ve chosen a growth mindset. And that mindset that’s stuck or fixed.
Bill Gasiamis 52:27
And if you haven’t chosen a fixed mindset, then you’re going to experience a better one. Here, your caregiving role is going to be better than what it would have been if your mindset was always going to be about no hope, and no possibility of things improving, etc. So I think, if we can make people aware of how they’re being influenced, and then get them to switch their influence, what they want to be influenced by the mindset gets a boost of support.
Tsgoyna Tanzman 53:11
Yes, there’s no question about that. Your mindset is everything. And you mentioned a growth mindset. Are you familiar with the term post-traumatic growth?
Bill Gasiamis 53:24
Oh, my gosh, well, I spoke about that two weeks ago. And I am familiar with the word because that’s what I’ve experienced. And there is a lot of research on post-traumatic growth. Now, the power of suffering is a very popular comment. So I’m very aware of the concept of post-traumatic growth. And that’s what I experienced after my stroke. And that’s what my book is about.
Bill Gasiamis 53:48
It’s about giving people the steps to post-traumatic growth. They might be doing a few of the steps to 10 steps that are involved, but they’re just not aware of a couple of them. And as a result of that, they’re just a little bit further away from feeling like they’ve had post-traumatic growth, we always talk about post-traumatic stress disorder. And we hear about the opposite of it. And there’s so much awareness about that. And that’s great because we’re helping people get out of that and overcome that. But that’s what I’ve experienced post-traumatic growth. So tell me about it.
Tsgoyna Tanzman 54:23
It’s such an incredible phenomenon that is just like you say, where the circumstance on the outside looks like the worst, most terrible catastrophe. And yet, for some people, there is incredible growth that comes with awareness. A shift in priority, a shift in value, recognition of how loved they are a new purpose, a new direction.
Tsgoyna Tanzman 54:57
I mean, look at you, you never had a podcast before this was not in your wheelhouse before. And here you are educating people and serving people in the world. And I hear that from so many of my patients, a woman who had debilitating depression had lost a baby, who died at her breast while she was nursing.
Tsgoyna Tanzman 55:23
And she went into a paralyzing depression for years and had a stroke. And because, and she isolated herself, and as a result of the stroke, she was forced to be in the company of a lot of different people. And all of a sudden, this paralyzing depression was lifted from her and she connected and, you know, she, it was just remarkable who she became.
Tsgoyna Tanzman 55:51
And I hear that from many, many of my patients, the patient that was alcoholic, who said, the greatest thing that ever happened to him was that he had a stroke, and it freed him of that debilitating condition of alcoholism. It’s like, wow, right? Like, nobody would say, Hey, I think you know, on my to-do list today, I think you should have a stroke because that sounds like a great way to have a good time. Nobody signs up for that.
Bill Gasiamis 56:20
Nobody does, it doesn’t start well. And it might not be good for years. And it might not seem like you’re getting better for years. And for me, it probably took around three or four years for me to get to the point where I first said that this is the best thing that happened to me. And then it took. And it took two years to research the book, and then another two years to write it.
Bill Gasiamis 56:44
So the whole journey is to deeply dive into that expression. And to embody that and to identify as that it took six years to get there fully get there. So when I reflect on day one, and it says it in, I think the first chapter of my book, day one was not the day that I realized stroke was the best thing that happened to me.
Tsgoyna Tanzman 57:08
Yeah, that was not the first day that you figured that out.
Bill Gasiamis 57:11
Not. So we’ve got, you know, there’s hope, after stroke, you know, to, quote your first book title, there is hope for all of those things. And what’s beautiful about it is it’s not just for the stroke survivor, the stroke, the best thing that happened to the person whom I’m caring for. You might not say that in those words to your family.
Bill Gasiamis 57:39
But it could be the beginning of some kind of amazing shift in the way you think about your relationship with life and your relationship with how you go about life. And what’s necessary to do life differently so that it serves a purpose. Rather than have a life that is not serving a purpose or greater purpose. You said something about stroke survivors going through that process and having post-traumatic growth.
Bill Gasiamis 58:11
The amount of stroke survivors who are in a week, one month one year of stroke recovery, who make it about other stroke survivors, is just phenomenal. My podcast is full of people who want to help other stroke survivors. And that’s one of the things one of the chapters in the book specifically talks about doing something for somebody else, and how that makes a massive difference in their life.
Bill Gasiamis 58:38
So as a caregiver, you can potentially, if you allow yourself some personal development work if you allow yourself some curiosity around, what can I learn from this or what can be what good can come of this, it might not end in a good outcome for the patient. But there may be something good that comes out of the experience that you all went through together.
Bill Gasiamis 59:07
And it’s really important for caregivers, not as separate themselves, are as easy for you to say, because you went through this traumatic thing, and then you had an aha moment or whatever. Well as a caregiver, you can have the same dramatic moment with somebody else’s illness, they can have the illness, and let them do that, because they’ve been chosen for that.
Bill Gasiamis 59:27
Why don’t you learn from that illness that they’re having and transform the way that you want to go about life and leave some of the behaviors or the old patterns behind, even if it’s hard to do, even if it’s hard for the other person who you’re caring for, to adjust to? It might just be what everybody needs is to go where the pain is and deal with the pain and focus on the pain so that you can put it behind you and decrease its Power, and then move on, in, in less pain because where the pain is, is where the work is.
Tsgoyna Tanzman 1:00:06
Absolutely. And you brought a great word to it too, which is curiosity. Yeah, it’s like, what can I learn from this? What can I know about this? How can I process this? Who am I becoming because of this? Who do I want to become because of this? Those are really powerful questions to ask. I want to say something about language, too, I think you mentioned at the beginning, that the language that we use doesn’t just describe our reality, it creates our reality.
Tsgoyna Tanzman 1:00:44
I’ve worked with Tony Robbins coaching with him. And, you know, he did this, you know, he’s dealt with millions of people worldwide for decades. And he came to understand that most people have, you know, five emotions that they deal with regularly, anger, frustration, depression, you know, a couple of those kinds of things.
Tsgoyna Tanzman 1:01:12
And part of it has to do with the language that they use, he said, you don’t just describe your reality. So like, for example, if you say to somebody, you’re wrong. Or if you say to somebody, you’re mistaken, you’re wrong, you’re a liar. Now, I didn’t change my voice in any of those. But you can tell like, by the time we get to, you’re a liar, that’s a very different feeling tone, then you’re mistaken.
Tsgoyna Tanzman 1:01:44
And when we use our language to describe our reality, we can turn up the volume on our negative feelings, we can turn up the volume on our positive feelings, or our neutral feelings, even something as I have to take care of my loved one. Versus I get to, I want to, I must, I need to all of those have very different things.
A shift in a caregiver’s mindset
Tsgoyna Tanzman 1:02:13
And I worked with a gentleman who was caring for his mother, she didn’t have a stroke, she had dementia. But he was a guy in his 70s who was living with his mother. And he’s like, I am the only one, I have to take care of her. And as we worked for a certain period, we got to find out the value that he was finding from that.
Tsgoyna Tanzman 1:02:34
And he switched it to, I get to take care of my mother. And I get to give back to her, I get to appreciate her in a way. And it just shifted the stress level for him and the resentment that he had towards other people. And it’s, you know, we have to do it in a context that feels real. We’re not going to say to somebody, Oh, I get to, you know, wipe his ass. Yey, that’s so much fun, right? So, you know, we’re going to be truthful about it. But we do get to see how we shape our experience from our language.
Bill Gasiamis 1:03:12
Yeah, it’s true. I did a presentation a few years ago called words are like weapons, they wound sometimes. It’s a beautiful line from a song by the singer Cher. And, you know, she’s on a battleship, and she’s wearing a sexy outfit, and she’s saying If I could turn back time if I could find a way.
Bill Gasiamis 1:03:40
And then one of the key lines is, you know, words are like weapons, they wound sometimes. And I was in rehab, doing rehabilitation I don’t think I was walking yet. Only about a week after the surgery, and I was in there. And I tell the story about a gentleman I met who I think his name was, I don’t know his name, but I called him Ivan.
Bill Gasiamis 1:04:06
He looked like an Ivan to me. And he had a stroke. And he was dealing with I think left side paralysis or right side paralysis. One side of his body was not working. So he was hemiplegic. And he was in rehab and was doing hand rehab. His job was to pick up an empty toilet roll which was stood up and to move it with his affected hand to the other side of his body and let it go and make sure it didn’t fall over.
Bill Gasiamis 1:04:37
But he was calling his hand to bastard in that process. Now I was a coach. I was a life coach before I had all of these dramas in 2012. And when he was going through that process, “Come on you bastard, move” he was saying that to his hand, and he wasn’t getting the result. Now, I was sitting on the opposite side, I could see what he was going through, the frustration, I had my hand in a bucket of rice trying to find the pen, trying to find the marble, trying to find, you know, the paper clip all that kind of stuff.
Bill Gasiamis 1:05:14
And over sensory kind of box, it was called or something like that a sensory box or something. And I just said to him, I said, if your hand moved, and it did what you wanted it to do, what would it be? And he said it’d be my friend. I said, okay, do me a favor, pretend that it’s already done what you want it to do, and see what happens and call it instead of a bastard, call it your friend.
Bill Gasiamis 1:05:42
So he did that. And he just looked at it and goes, come on, friend, move. Within, literally, I don’t know if we can measure it in a second or not. Because it was less than that. He picked it up, they picked up that toilet roll, after having tried and failed many, many times, and put it on the other side, and stood it up and let it go.
Bill Gasiamis 1:06:04
So immediately everyone went nuts. A lot of people noticed that some of the therapists missed it because there were a few of us at the table. So they might have missed it. But he noticed the difference in the way that he was speaking to his hand, and the result that he got, just by changing one word, and the amazing, dramatic difference that he got.
Bill Gasiamis 1:06:29
And that’s it, he was wrapped. And then I’ve never known what happened to him after that. Because after a month, I was out of there, and I’m not sure what happened to him. But I hope that he took that home with him and used that to help him walk.
Tsgoyna Tanzman 1:06:46
100% I just love that. And I’ve said that also with my patients, you know when the sometimes the physical therapists are saying like up with the good and down with the bad. It’s like when we think something is bad. We want to reject it. When we call it a baster. We want to reject it we are disconnected from it.
Tsgoyna Tanzman 1:07:05
We’re already disconnected, we want to integrate, we want it to notice that we want to get curious about it. You know that there’s an acronym that saps the stroke-affected side, right? So I said like, that’s my sassy side, right? We have handicap placards, here, I call them the VIP pass, it’s like getting your VIP pass for getting some good parking, you know.
Tsgoyna Tanzman 1:07:34
Like all of these things are small, but perceptual changes in how we feel about them. We are either integrating or disconnecting, we are embracing or rejecting, and I think I love that you did that with him and that he saw that immediate thing. And it’s so profound, so profound.
Bill Gasiamis 1:08:01
The smallest change made no effort whatsoever to make the change. The result was, you can’t even measure it. I mean, it’s immeasurable, the results. And what that did for his self-esteem, what it did for the way that he felt about hope in his recovery, what they did for, you know, his arm movement, what it did for his family and what it did for everybody, everybody.
Bill Gasiamis 1:08:25
And I’m hoping that the other stroke survivors around us also noticed, you know, and perhaps they changed something. But then the lesson from that is I’ve been able to retell that story elsewhere, to people who came to hear me speak. And that was an amazing experience as well being able to go, Hey, this is the smallest thing that happened in an entire month. And it got the biggest result.
Tsgoyna Tanzman 1:08:56
Beautiful, I love that being able to share it with as many people as possible to flip the way that they think about something.
Bill Gasiamis 1:09:02
Yeah. And it applies to caregivers, right? It’s not just applicable to stroke caregivers, heart attack caregivers, cancer caregivers, stroke survivors, every person on the planet it applies to and that’s the thing about our books, you know, they are written for everybody but with a title so that our audience can find it and easily use it.
Tsgoyna Tanzman 1:09:25
When is your book coming out?
Bill Gasiamis 1:09:26
Probably September 1, the second week of September, or something like that. It’s with the editors now, so we’re putting the final touches on it. So it’s really exciting. It’s a great thing, and it’s what you said, you know, it’s the guy before the stroke, who didn’t write books and get podcasts and do that stuff. It didn’t do that he did other things that were designed by somebody else for me to be doing. They were a process in a way of life that wasn’t designed by me I was just going ahead and doing it thinking it was what I needed to do and thought that that was all that I was capable of.
Tsgoyna Tanzman 1:10:05
Yeah, you know, I tell you writing a book shows you who you are. There were some challenges with that, right? I certainly experienced them. Yeah.
Bill Gasiamis 1:10:17
One of the hardest things I’ve ever done. It is such a difficult task. Oh my gosh, I just could not believe how difficult that was and how mentally physically emotionally challenging it was going to be. It was just like learning how to walk again. But this thing, I couldn’t do it. That’s the thing. It was so hard to not do. It was the only thing on my mind. When I wasn’t doing it. It was just driving me insane. I need to be doing this.
Bill Gasiamis 1:10:45
And why aren’t I doing it? And, of course, there were lots of reasons for energy levels. You know, there were creative blanks about how do I go about putting this into words, and it was giving me this, but this was what I also learned from it, just like my recovery from stroke was giving myself time to let that come and download the way that it needed to download.
Bill Gasiamis 1:11:10
And to not be put under pressure by the people who had me on a one-year deadline. And then deadlines don’t work in stroke recovery. If you give yourself a deadline that I’m going to work to walk by this date, and you don’t get that you get disappointed. So I use the same approach to writing this book I know you need me to finish it, but it’s just not gonna get done. So we have to take longer on this.
Tsgoyna Tanzman 1:11:37
It’s not gonna get done in that timeframe. But it got done.
Bill Gasiamis 1:11:42
Exactly. So one of the things we’re going to sort of come to the end and wrap up in a little while, but just before we do I want to talk about because we’ve talked about we’ve spoken about caregivers who don’t sign up for the job. Okay, so family members, and loved ones, but what about paid caregivers?
Bill Gasiamis 1:12:02
So this is an interesting little spin on the whole caregiving world. Now, they get paid to go and do something for somebody else, maybe for eight hours a day. I feel like there are a few little traps and tricks in there that people who are paid caregivers might get stuck in or find themselves in that they weren’t aware, aware of because they’re not only obliged to do their work for the person they’re caring for but also because their employer says you have to do caring and caregiving.
Tsgoyna Tanzman 1:12:41
Yes, and sometimes I know, as a therapist working, sometimes I would say to a caregiver, allow the person time to speak or allow the person you know, the ability to struggle with what they were doing. The physical therapist would mention that as well. And, and the caregivers, the paid caregivers, felt like unless they were doing, somebody was going to report them for not doing you know that they weren’t doing their job.
Tsgoyna Tanzman 1:13:15
So it is a tricky little place to provide service for them. And we would say, Well, okay, what are some other things you could do that would be useful in providing care and being here for the family and, you know, getting the bigger needs taken care of? But that still allows that person their level of recovery, of failing or learning how to do it better and getting better at it.
Tsgoyna Tanzman 1:13:52
And so it’s an ongoing process. It’s not like a one-and-done because ideally, what you’re seeing over some time is that the person is getting better, the survivor is getting better, so we’re doing less than less for them. How can we make it easier, I worked with one care provider you know, that would just dress his patient, and the patient or you know, the survivor had no say in anything.
Tsgoyna Tanzman 1:14:22
So I started by saying, okay, instead of just dressing him, either bring him to the closet or bring out two things. And he was at a cognitive level where he needed simple choices. It’s like, do you want the red shirt or the white shirt? You know, you choose? Do you want the blue pants or the green pants, so that there was some autonomy, and he had to use his language to even ask for it or he had to gesture? He had to show in some way that he was, you know, making his needs known.
Tsgoyna Tanzman 1:15:00
And then, you know, taking him to, to the sink, you know, give him what his skills were, like I already knew from the occupational therapist, that he could brush his teeth, but he needed some setup. So it’s like, okay, provided here. Because before the guy was just brushing his teeth, it’s like, let this person do it.
Tsgoyna Tanzman 1:15:22
Even if he makes a mess, he’s going to make a mess. That’s okay. He’s going to make a mess. And he’s going to refine it, the more he does it, but if he doesn’t ever do it, he’ll never get better at it. And that’s that learned dependency, deciding on his food?
Tsgoyna Tanzman 1:15:42
Do you want soup or a sandwich? You know, whether he’s pointing to a picture, he’s pointing to the thing. He’s saying what it is that he wants. Any of those are? Yes, it takes longer. There’s no question that it takes longer. But that is the active role of a very good caregiver who can see incrementally little changes. And the discussion needs to be upgraded all the time as to what the roles and responsibilities are.
Bill Gasiamis 1:16:16
I’ve had the feeling that occupational therapists, physical therapists, speech therapists, and all sorts of people who are in the therapy field would be really good caregivers, so to speak because they would know where the lines are drawn. Okay, well, I think I’m going to let you do that on your own. Because if I do it for you, you won’t learn because they’ve been schooled and trained in that space.
Bill Gasiamis 1:16:38
But often, paid caregivers are not trained, they are just somebody who signs up and says, I’m looking for a job. And then the job is going to care for this person for an hour, they might get some basic training, but they don’t have the in-depth, detailed understanding and the schooling, to understand where they are getting in the way and for the sake of doing their job efficiently and quickly. Or to make sure that they don’t go over the allocated time that they’re given. They might choose to do this for that person, instead of letting them go through the process.
Tsgoyna Tanzman 1:17:21
Yes. And that’s where we end up in this learned helplessness or learned dependency. So it is a tricky balance. And, you know, very often families go through multiple caregivers until they find the right fit. And I do support people with that. With that, you know, it’s not easy. It’s not easy finding the right sort of energetic levels and understanding in the same way and you know, so that is a process that one learns about
How to get Tsgoyna Tanzman’s books
Bill Gasiamis 1:17:57
Well, this has been, again, an amazing conversation. Thank you so much for being on the podcast again, during the work that you do. Having written the books that you’ve written, I appreciate the fact that they exist, because they’re books that are desperately needed by the community. So we’re going to make sure that the links to those books are all available on the show notes. Just before we go though, tell me where people can find out more about you and where they can get your books.
Tsgoyna Tanzman 1:18:27
Yeah, so my books are on Amazon and wherever books are sold. They’re through Barnes and Noble. But I know that they’re sold in Australia. I see people buy them in Australia. So that’s the easiest way to get the books. You can reach me by hope-stroke.com That’s my website, also my first name which is always a little weird, because it takes a while to buy a vowel but it’s TSGOYNA.COM. Once you get the T’s like tsunami GOY runs with Boy and then there’s NA. So that’s pretty easy. TSGOYNA.COM
Bill Gasiamis 1:19:14
I’ve said it twice already and I’m getting it wrong again. TSGOYNA.COM.
Tsgoyna Tanzman 1:19:23
Or hope-stroke.com yeah, either way, those are the best ways to reach me and then I do have one other book which is out which is called Just Decide Failproof Strategies to Uplevel Your Life, career, and Relationships. But this is the basis of everything. I mean, it’s for caregivers, it’s, for anybody. It’s really about understanding that our thoughts, create our feelings which direct our actions and get our results. And you know that it’s not the circumstance.
Tsgoyna Tanzman 1:19:59
It’s not this Stroke, that creates a terrible life. Right? It’s, it’s the thought, this has ruined my life that creates that, that same stroke that you’ve had, you know, in when in the early stages, you’re thinking, you know, I don’t know if I can do this. And now your thoughts are, this was the greatest gift that happened to me. And when you’re thinking that thought, How do you feel?
Bill Gasiamis 1:20:27
Yeah, the difference, I think, okay, so, how that worked for me because you just picked up on something, you said the thoughts, create the feelings that take action that creates the action? If you started with the feeling? What would you like the feeling to be? So if you started the inquiry at your heart, that will then guide the head to have different thoughts? And then that would create different actions?
Bill Gasiamis 1:20:59
So usually, we give the head the job of doing everything, and coming up with all the solutions and all that kind of stuff. And we bypass the heart and the emotional side of this whole thing. We go through negative emotions, but we don’t look at the positive emotional journey that can come from it. And what’s good about this question, what’s good about this is not asking your head for the answer.
Bill Gasiamis 1:21:25
It’s asking your heart for the answer. And what can I learn from this is to ask your heart for the answer, your head might have curiosity. But if you go from your curiosity, or your question starts with a heart-based desire, what would I like to get out of this? What would I like to learn about this?
Bill Gasiamis 1:21:45
How would I like to grow from this, then that’s going to give the head guidance as to what thinking to do, and what the appropriate level of thinking is. And then once the appropriate level of thinking is done, the legs take action to lead you down that path. And you start noticing things about that version of the thinking.
Tsgoyna Tanzman 1:22:11
Such a great way to direct your brain, from your heart based on the desire of where you want to go. Because when you ask a quality question like that, you get a quality answer. Your brain starts to search for quality answers when you ask questions like, Why is life so hard? Well, you can find a lot of reasons for that. But is that the result that you want? Or what am I learning from this? How am I gaining from this? How will this enable me to grow? Make difference? Yeah, beautiful questions.
Bill Gasiamis 1:22:50
Thank you so much for being on the podcast.
Tsgoyna Tanzman 1:22:52
Oh, my gosh, it’s such a pleasure. I know we could talk for hours, couldn’t we? With our same coffee cups?
Bill Gasiamis 1:22:58
Yes, and we probably will on another episode soon.
Tsgoyna Tanzman 1:23:02
Sounds great.
Bill Gasiamis 1:23:04
Thank you, again, so much. And I look forward to following the work that you do.
Tsgoyna Tanzman 1:23:10
I do too. I can’t wait till your book comes out. Good luck to you. And thanks so much for having me.
Bill Gasiamis 1:23:15
Thank you for joining us on today’s episode. To learn more about my guests including links to their social media, and other pages, and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 1:23:30
If you’d like to support this podcast, the best way to do it is to leave the show, a five-star review, and a few words about what the show means to you on iTunes and Spotify. If you are watching on YouTube, comment below the video like this episode, and get notifications of future episodes. Subscribe to the show on the platform of your choice.
Bill Gasiamis 1:23:51
If you are a stroke survivor with a story to share about your experience, come and join me on the show. The interviews are not scripted, you do not have to plan for them all you need to do to qualify as the best stroke survivor care for someone who is a stroke survivor, or is one of the fabulous people who helps stroke survivors go to recoveryafterstroke.com/contact.
Bill Gasiamis 1:24:13
Fill out the form. And as soon as I receive your request I will respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I appreciate you see you on the next episode.
Intro 1:24:28
Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. The opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed.
Intro 1:24:45
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Intro 1:25:49
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