Unplanned Journey: Robin's Path Through TBI with Love and Strength | Ep. 4

In this eye-opening episode of Real Lives of TBI Wives, host Erika Brouillette speaks with Robin Szymkowski, a devoted wife and caregiver who opens up about the life-altering moment her husband suffered a traumatic brain injury (TBI). Robin recounts the shock of the accident, the relentless stream of medical complications, and the steep learning curve that came with managing her husband’s evolving care needs.

She offers an honest look into the emotional exhaustion, financial burdens, and the detailed care techniques she had to master—while still advocating fiercely for her husband's quality of life. Robin also emphasizes the critical role of self-care, support systems, and the strategies she’s used to navigate a journey no one prepares you for.

This episode is a must-listen for any wife walking the long, uncertain road of TBI caregiving, filled with raw truth, hard-earned wisdom, and hope for those seeking guidance and strength.

Episode Transcript

(00:01):
Hey friends.
Welcome to real lives of TBI Wives, the podcast that gets real about the challenges, heartache and strength it takes to be a wife and caregiver after traumatic brain injury.
I'm roulette wife, caregiver, and advocate here to remind you that you are not alone.
This life may not look the way you planned, but together we'll find ways to navigate it with resilience, support, and maybe even a little laughter.

(00:27):
I'm so glad you're here. 6 00:00:30,765.011337868 --> 00:00:36,795.011337868 This morning we're talking with Robin Zukowski and she is here to share her story. 7 00:00:36,855.011337868 --> 00:00:37,695.011337868 So Robin. 8 00:00:38,355.011337868 --> 00:00:40,455.011337868 Take us back to the day of the accident. 9 00:00:40,605.011337868 --> 00:00:43,65.011337868 The day started off like any other day. 10 00:00:43,95.011337868 --> 00:00:50,975.011337868 I had just started a brand new job and it was my third day on this new job, I called my husband before work, as I always did. 11 00:00:50,975.011337868 --> 00:00:52,115.011337868 My husband was a trucker. 12 00:00:52,115.011337868 --> 00:01:05,565.011337868 He drove semi interstate and he didn't answer, I tried back again, 15, 20 minutes later, and he didn't answer again I called a third time, and of course he didn't answer, so I just had a pit. 13 00:01:05,625.011337868 --> 00:01:09,645.011337868 I just felt something was wrong, but I kept getting ready for work. 14 00:01:09,915.011337868 --> 00:01:15,555.011337868 Just as I was getting ready to leave for work is when I put the call, your husband's in an ambulance. 15 00:01:15,555.011337868 --> 00:01:17,955.011337868 We really don't know what happened. 16 00:01:18,35.011337868 --> 00:01:24,95.011337868 It was his dispatcher that called me and was directing me as I was driving, to the first hospital. 17 00:01:25,385.011337868 --> 00:01:28,535.011337868 I was terrified because he didn't pick up the phone. 18 00:01:28,585.011337868 --> 00:01:35,35.011337868 my husband is a very tough man, so for him not to pick up my call, something is definitely not right. 19 00:01:35,65.011337868 --> 00:01:43,355.01133787 Got to the first hospital, seeing my husband, and I knew by the look in his eyes something was seriously wrong. 20 00:01:43,445.01133787 --> 00:01:46,685.01133787 That hospital wasn't equipped to handle the situation. 21 00:01:46,685.01133787 --> 00:01:51,455.01133787 So he was then off to a level one trauma hospital within my state. 22 00:01:52,955.01133787 --> 00:02:02,555.01133787 And there just started a whirlwind of tests and many different doctors that took us through a journey of we're heading on now eight years. 23 00:02:03,55.01133787 --> 00:02:08,885.01133787 I felt ignorant and oblivious to a lot of the terminology that was being used. 24 00:02:08,885.01133787 --> 00:02:24,875.01133787 I didn't understand some of the testing that was performed on my husband I can't even tell you how many doctors, trips, tests, medications over the course of these last year's but I can tell you He was on 23 different meds. 25 00:02:25,395.01133787 --> 00:02:30,785.01133787 he is still being treated by 13 different specialists almost eight years later. 26 00:02:31,655.01133787 --> 00:02:33,515.01133787 it's just unbelievable. 27 00:02:33,565.01133787 --> 00:02:41,265.01133787 in the year 2021, he had 42 appointments, And that was four years post accident. 28 00:02:41,325.01133787 --> 00:02:45,135.01133787 I attended every appointment I possibly could. 29 00:02:45,195.01133787 --> 00:03:01,705.01133787 I did everything within my power to help him because there was no way that he cognitively could remember when I finally was able to go back to work roughly five months after his accident, I was terrified to leave him all alone. 30 00:03:01,765.01133787 --> 00:03:02,995.01133787 We don't have kids. 31 00:03:03,400.01133787 --> 00:03:06,340.01133787 We don't have any immediate family near. 32 00:03:06,760.01133787 --> 00:03:09,520.01133787 My husband doesn't have any immediate family left. 33 00:03:10,270.01133787 --> 00:03:15,280.01133787 I have two sisters that are several hours away, so I was in this by myself. 34 00:03:15,780.01133787 --> 00:03:19,440.01133787 I put our low camera system inside and outside of my house. 35 00:03:19,710.01133787 --> 00:03:21,210.01133787 I had notes everywhere. 36 00:03:21,270.01133787 --> 00:03:26,670.01133787 And when you're gone and you're at work, even with those things, you are checking your camera. 37 00:03:26,670.01133787 --> 00:03:30,540.01133787 Often you're calling, you're texting to see you're never off duty. 38 00:03:31,50.01133787 --> 00:03:32,880.01133787 You never, never off duty. 39 00:03:32,940.01133787 --> 00:03:47,80.01133787 And, it was pure insanity for the first three years with all of those things going on and having to maintain and keep our house because we lost his income and I lost a significant amount of income. 40 00:03:47,130.01133787 --> 00:03:49,860.01133787 I actually had the video of my husband's accident. 41 00:03:50,635.01133787 --> 00:03:56,395.01133787 and I use that tool to show the doctors because then they knew what happened. 42 00:03:56,485.01133787 --> 00:04:01,885.01133787 They could see clearly what happened and why there's so many complications. 43 00:04:01,885.01133787 --> 00:04:04,75.01133787 So I was really grateful for that. 44 00:04:04,165.01133787 --> 00:04:10,285.01133787 And I use that video as a tool that when I find myself thinking like normal people. 45 00:04:10,955.01133787 --> 00:04:14,885.01133787 it puts me back into perspective what I have on a daily basis. 46 00:04:14,915.01133787 --> 00:04:21,95.01133787 The constant getting up to get a bottle of water and then doing it again five minutes later because he'd already forgotten. 47 00:04:21,155.01133787 --> 00:04:30,65.01133787 Or maybe he was kind enough to assist with putting clean dishes away and he went to the bathroom and totally forgot that he was doing that. 48 00:04:30,65.01133787 --> 00:04:32,135.01133787 And the dishwasher left open all day. 49 00:04:32,195.01133787 --> 00:04:39,490.01133787 Going to take the garbage out once again, maybe go to get a bottle of water Forget, and there the garbage can is in the middle of the kitchen floor. 50 00:04:39,990.01133787 --> 00:04:42,812.01133787 we have to find the humor in that sometimes though, right? We do, we do. 51 00:04:42,817.01133787 --> 00:04:44,10.01133787 To get ourselves through it. 52 00:04:44,70.01133787 --> 00:04:44,580.01133787 Yeah. 53 00:04:44,580.01133787 --> 00:04:44,970.01133787 Yeah. 54 00:04:44,975.01133787 --> 00:04:46,380.01133787 And, and it's, and it's crazy. 55 00:04:46,380.01133787 --> 00:04:51,720.01133787 We now laugh about it, but you know, the first three years were the absolute toughest. 56 00:04:51,720.01133787 --> 00:04:55,590.01133787 All of the things that, you know, people say, oh, I forget sometimes too, but I. 57 00:04:55,590.01133787 --> 00:05:00,180.01133787 forget multiple times on a daily basis? Multiple times all day, every day. 58 00:05:00,180.01133787 --> 00:05:09,780.01133787 If you have more than two choices, that you don't have the ability to make that decision, that you don't have the ability any longer to multitask. 59 00:05:09,810.01133787 --> 00:05:10,830.01133787 I was scared. 60 00:05:10,830.01133787 --> 00:05:12,480.01133787 I felt very alone. 61 00:05:12,480.01133787 --> 00:05:13,650.01133787 I was angry. 62 00:05:13,700.01133787 --> 00:05:14,900.01133787 I was exhausted. 63 00:05:14,990.01133787 --> 00:05:16,910.01133787 Exhausted trying to sleep. 64 00:05:16,910.01133787 --> 00:05:35,280.01133787 But My brain didn't shut off because I needed to learn the verbiage of a whole world I wasn't even aware existed until that day, And what all of those complications were? The words, the types of doctors you felt Powerless and overwhelmed and ignorant. 65 00:05:35,310.01133787 --> 00:05:36,0.01133787 Hopeless. 66 00:05:36,50.01133787 --> 00:05:40,730.01133787 the first two years you have hope still, and then it starts to subside. 67 00:05:40,820.01133787 --> 00:05:47,840.01133787 But there are tools out there that I've learned through the process that have been really beneficial. 68 00:05:47,870.01133787 --> 00:05:49,970.01133787 Mood swings were insane. 69 00:05:50,180.01133787 --> 00:05:54,115.01133787 There were sometimes very, very scary, sometimes embarrassing. 70 00:05:54,615.01133787 --> 00:05:55,905.01133787 How did you navigate through those? Absolutely. 71 00:05:55,995.01133787 --> 00:06:00,975.01133787 Well, you know, the first few times really, some of them really scared the living shit out of me. 72 00:06:00,975.01133787 --> 00:06:08,65.01133787 I'm not gonna lie, I'll be very transparent and I knew that if I didn't do something that this was not going to end well. 73 00:06:08,65.01133787 --> 00:06:08,665.01133787 So I. 74 00:06:08,665.01133787 --> 00:06:14,965.01133787 Talked to the neurologist and I told him what was happening gave him the details and said, we need help. 75 00:06:14,965.01133787 --> 00:06:19,45.01133787 he lined us up with a psychologist and a psychiatrist for meds. 76 00:06:19,105.01133787 --> 00:06:27,325.01133787 So we had talk therapy and medication keep in mind, prior to injury, we both worked a ton of hours. 77 00:06:27,325.01133787 --> 00:06:29,755.01133787 I worked in the automotive industry, I still do. 78 00:06:29,815.01133787 --> 00:06:31,525.01133787 My husband drove semi. 79 00:06:31,965.01133787 --> 00:06:41,815.01133787 we rode Harley's, dirt bikes, ATVs, we hunted, we fished, we worked on cars together, so we had a very busy life beforehand. 80 00:06:41,815.01133787 --> 00:06:43,985.01133787 And now, all of that's changed. 81 00:06:44,35.01133787 --> 00:06:46,975.01133787 he was the last one that would ever want. 82 00:06:47,180.01133787 --> 00:06:48,650.01133787 To go to counseling. 83 00:06:48,710.01133787 --> 00:06:50,870.01133787 Who wants to go to counseling, but we'll be fine. 84 00:06:50,960.01133787 --> 00:06:52,420.01133787 No, We're not. 85 00:06:52,510.01133787 --> 00:07:01,600.01133787 And we both attended all of those appointments together and I found that I couldn't just send him because that accident changed me too. 86 00:07:01,720.01133787 --> 00:07:05,260.01133787 It gave me a lot of different feelings that I didn't like. 87 00:07:05,350.01133787 --> 00:07:06,885.01133787 It was turning me into a person. 88 00:07:07,140.01133787 --> 00:07:11,490.01133787 in order to save both of us and our marriage, we had to do it. 89 00:07:11,640.01133787 --> 00:07:35,755.01133787 And the first appointment, second appointment, third appointment, once we got past about the sixth to eighth appointment is when It really started opening up and working, but it was years and we still see a psychologist or a psychiatrist to this day to maintain, I needed to learn how to communicate with a person with a brain injury period. 90 00:07:35,905.01133787 --> 00:07:36,295.01133787 Yes. 91 00:07:36,295.01133787 --> 00:07:37,75.01133787 That's so great. 92 00:07:37,75.01133787 --> 00:07:41,245.01133787 And to find a psychologist or a psychiatrist that you jive with. 93 00:07:41,455.01133787 --> 00:07:45,595.01133787 I feel like shopping for a psychiatrist is a real thing. 94 00:07:45,985.01133787 --> 00:07:48,295.01133787 and having to peel off that bandaid. 95 00:07:48,645.01133787 --> 00:07:54,225.01133787 Share, and if that one doesn't work, having to do it all over again and tell your story again. 96 00:07:55,375.01133787 --> 00:07:56,185.01133787 It's so hard. 97 00:07:56,235.01133787 --> 00:08:03,665.01133787 we were very, very lucky because, all of my husband's doctors are at that level one trauma hospital. 98 00:08:03,695.01133787 --> 00:08:13,700.01133787 I had a lot of access to great doctors, but you're right, I made sure that my husband's seen, like each neurologist has their own specified discipline. 99 00:08:13,800.01133787 --> 00:08:16,350.01133787 So he has multiple neurologists. 100 00:08:16,350.01133787 --> 00:08:17,820.01133787 it's not one size fits all. 101 00:08:17,820.01133787 --> 00:08:19,80.01133787 It doesn't work that way. 102 00:08:19,85.01133787 --> 00:08:19,165.01133787 Mm-hmm. 103 00:08:19,560.01133787 --> 00:08:27,630.01133787 You know, there's a neurologist for migraine, there's a neuropsychologist, you know, that you can kind of see where they're at. 104 00:08:27,690.01133787 --> 00:08:31,230.01133787 The first time I read that first report, I bled my eyes out. 105 00:08:31,455.01133787 --> 00:08:33,615.01133787 I couldn't, it was on paper. 106 00:08:33,620.01133787 --> 00:08:33,900.01133787 Mm-hmm. 107 00:08:34,245.01133787 --> 00:08:35,535.01133787 It was on paper. 108 00:08:35,535.01133787 --> 00:08:36,945.01133787 It was right there. 109 00:08:36,945.01133787 --> 00:08:38,235.01133787 You can't change it. 110 00:08:38,305.01133787 --> 00:08:41,105.01133787 and this was a neurologist that treats the NFL. 111 00:08:41,105.01133787 --> 00:08:43,205.01133787 he's on the sidelines of every games. 112 00:08:43,205.01133787 --> 00:08:44,645.01133787 He is. 113 00:08:45,305.01133787 --> 00:08:46,595.01133787 That's what he does. 114 00:08:46,715.01133787 --> 00:08:47,735.01133787 You know, he's well versed. 115 00:08:47,735.01133787 --> 00:08:48,155.01133787 Yeah. 116 00:08:48,185.01133787 --> 00:08:49,610.01133787 You know, I mean, and the. 117 00:08:50,485.01133787 --> 00:08:57,25.01133787 You know, the TBI gut related, but we have a GI specialist that, I mean, that's what they specialize. 118 00:08:57,25.01133787 --> 00:08:59,935.01133787 Know that brain, gut, a combination. 119 00:08:59,935.01133787 --> 00:09:03,415.01133787 You know, the fact that the eyes don't know how to work as a team anymore. 120 00:09:03,505.01133787 --> 00:09:06,115.01133787 That neuro ophthalmologist, you know, the. 121 00:09:07,100.01133787 --> 00:09:07,490.01133787 Trauma. 122 00:09:07,490.01133787 --> 00:09:14,870.01133787 Glaucoma specialist, the retina specialist, you know, that's just the name of you off the top of my head. 123 00:09:14,930.01133787 --> 00:09:17,360.01133787 So number one, being an advocate. 124 00:09:17,490.01133787 --> 00:09:20,670.01133787 One day you woke up and you became your husband's advocate. 125 00:09:20,670.01133787 --> 00:09:26,860.01133787 The man who provides, the man who cares for his wife had to fully depend on you to guide him to be his voice. 126 00:09:26,880.01133787 --> 00:09:29,760.01133787 To help him receive the care that he needed. 127 00:09:29,880.01133787 --> 00:09:39,810.01133787 And even though you didn't feel like you were equipped, you had to learn the lingo, you had to learn the words and be that voice. 128 00:09:40,320.01133787 --> 00:09:43,230.01133787 So how in all of that. 129 00:09:43,810.01133787 --> 00:10:04,450.01133787 did you find to care for yourself? Well, I'm very, very thankful because I met a woman at a dog training thing in Milwaukee, Wisconsin, what's funny is we share the same first name and she's an rn I would call her at the strangest hours with questions she sat with me during several of his surgeries at the hospital. 130 00:10:04,450.01133787 --> 00:10:07,390.01133787 She doesn't live far from that facility, strangely enough. 131 00:10:07,410.01133787 --> 00:10:10,230.01133787 So she was a huge, huge person. 132 00:10:10,680.01133787 --> 00:10:23,970.01133787 And a handful of friends, and believe me, we used to have a lot of friends, but when you get into something long-term, people go on with their lives, they wanna help, but it's hard to, I mean, what do you do? QA laws are in place. 133 00:10:23,970.01133787 --> 00:10:26,490.01133787 In our case, this is a workplace injury. 134 00:10:26,490.01133787 --> 00:10:33,450.01133787 in a workplace injury, nobody from the employer wants to speak with you because they don't want anything to do with what's going on legally. 135 00:10:33,910.01133787 --> 00:10:35,20.01133787 and I get that. 136 00:10:35,120.01133787 --> 00:10:37,340.01133787 there was a while that I was resentful. 137 00:10:37,370.01133787 --> 00:10:38,750.01133787 Nobody was coming to save me. 138 00:10:38,850.01133787 --> 00:10:42,600.01133787 this is what you have on your plate, so you need to figure it out. 139 00:10:43,395.01133787 --> 00:10:45,495.01133787 And so that's what he did. 140 00:10:45,545.01133787 --> 00:10:48,245.01133787 a handful of friends and a great dog. 141 00:10:49,295.01133787 --> 00:10:50,735.01133787 I'm very fortunate. 142 00:10:50,735.01133787 --> 00:10:53,765.01133787 the last three years I've been working from home remotely. 143 00:10:53,765.01133787 --> 00:11:05,175.01133787 That's been an immense help for an employer that genuinely cares, So now I have some assistance with a guardian nurse that handles making sure prescriptions come on time. 144 00:11:05,415.01133787 --> 00:11:06,495.01133787 That's a huge help. 145 00:11:06,525.01133787 --> 00:11:13,185.01133787 All those calls to pharmacies and doctors and choreographing appointments that was a full-time job in itself. 146 00:11:13,305.01133787 --> 00:11:14,175.01133787 Absolutely. 147 00:11:14,710.01133787 --> 00:11:25,245.01133787 and all of the nights that I didn't sleep because I needed to educate myself so that I could do all of that and work a full-time job prior to remote, it was exhausting. 148 00:11:25,625.01133787 --> 00:11:29,525.01133787 Physically, mentally, financially exhausting. 149 00:11:29,575.01133787 --> 00:11:32,605.01133787 and that's another part too, the financial end of it. 150 00:11:32,635.01133787 --> 00:11:41,5.01133787 we lost significant income, both of us, and I needed to figure out how I was going to keep a roof over both of our heads insurance vehicles. 151 00:11:41,485.01133787 --> 00:11:46,75.01133787 And now I have a partner that can't decide if he has two options for dinner. 152 00:11:46,225.01133787 --> 00:11:51,375.01133787 So all of the decision making is on my plate now, I refinanced my house. 153 00:11:51,405.01133787 --> 00:11:53,175.01133787 I paid off all personal debt. 154 00:11:53,265.01133787 --> 00:11:55,425.01133787 I traded two cars in for one. 155 00:11:55,485.01133787 --> 00:11:57,135.01133787 I bawled when my Camaro left. 156 00:11:57,135.01133787 --> 00:11:57,165.01133787 I. 157 00:11:57,785.01133787 --> 00:11:59,105.01133787 Flat out cried. 158 00:11:59,285.01133787 --> 00:12:00,275.01133787 It was terrible. 159 00:12:00,305.01133787 --> 00:12:08,415.01133787 our motorcycle gone, whatever I could do to reduce that debt to where I could maintain needed to be done. 160 00:12:08,505.01133787 --> 00:12:12,555.01133787 And you can't have friends help you with those choices. 161 00:12:12,615.01133787 --> 00:12:16,275.01133787 They can't help with a lot of the hospital stuff because of HIPA laws. 162 00:12:16,335.01133787 --> 00:12:18,255.01133787 So it's tough, you know, you can't. 163 00:12:18,470.01133787 --> 00:12:37,290.01133787 When random people say, what can I do to help? It's, what do you even say? What can you help with? It's really a tough situation and it's a place where although it's isolating and you feel like you need people, it's also personal and to let people in to that personal space Right. 164 00:12:37,410.01133787 --> 00:12:38,340.01133787 Is also hard. 165 00:12:38,400.01133787 --> 00:12:38,820.01133787 Oh, yeah. 166 00:12:38,910.01133787 --> 00:12:40,530.01133787 Especially for the mood swings. 167 00:12:40,680.01133787 --> 00:12:41,70.01133787 Mm-hmm. 168 00:12:41,290.01133787 --> 00:12:44,470.01133787 People would just look and think, oh, you're just married to a jerk. 169 00:12:44,650.01133787 --> 00:12:50,560.01133787 But they don't know he has a brain injury because the surgeries they did, they did through his mouth. 170 00:12:50,770.01133787 --> 00:12:52,720.01133787 So he has no external scars. 171 00:12:52,720.01133787 --> 00:13:03,35.01133787 He looks totally healthy, and you could speak to him and he can appear very normal, but if you actually seen him where it was, the best way to explain it is like a computer. 172 00:13:03,510.01133787 --> 00:13:10,200.01133787 The more apps you have open, the slower your computer goes, right? Very much the same with the person with brain injury. 173 00:13:10,250.01133787 --> 00:13:15,390.01133787 if you would add in, lights Sound Movement It slows down. 174 00:13:15,540.01133787 --> 00:13:16,980.01133787 Well, imagine driving. 175 00:13:17,200.01133787 --> 00:13:29,410.01133787 Your spouse 45 minutes into a major hospital to where there's a lot of traffic, and then there's doors that spin and there's elevators and there's floors with crazy patterns. 176 00:13:29,470.01133787 --> 00:13:34,0.01133787 So all of those things would get very overwhelming for him. 177 00:13:34,0.01133787 --> 00:13:38,980.01133787 So he would be overstimulated, mentally, and that's when he would lose it. 178 00:13:39,40.01133787 --> 00:13:45,730.01133787 I mean, I've had times where I've had to pull over a car because he was just exploding, and I would have to turn around. 179 00:13:46,400.01133787 --> 00:13:51,170.01133787 Go home and call the doctor and say, I'm sorry, I just can't get there safely today. 180 00:13:51,380.01133787 --> 00:13:52,40.01133787 I just can't. 181 00:13:52,310.01133787 --> 00:13:53,510.01133787 And they understood. 182 00:13:53,750.01133787 --> 00:13:54,410.01133787 They knew. 183 00:13:54,450.01133787 --> 00:13:54,750.01133787 Absolutely. 184 00:13:56,680.01133787 --> 00:14:02,90.01133787 how do you explain it? You can't, there isn't anything out there and every brain injury is different. 185 00:14:02,130.01133787 --> 00:14:03,420.01133787 and doctors are different. 186 00:14:03,420.01133787 --> 00:14:08,160.01133787 I remember going into an appointment and saying, my husband's hands will get. 187 00:14:08,460.01133787 --> 00:14:10,680.01133787 Ice cold, like so ice cold. 188 00:14:10,710.01133787 --> 00:14:14,910.01133787 I would come home from work and the furnace would be on 75 degrees. 189 00:14:14,910.01133787 --> 00:14:20,510.01133787 He would be having two comforters on and he would be ice they would say, the AC just kicked on. 190 00:14:20,600.01133787 --> 00:14:22,610.01133787 No, no, that's not it. 191 00:14:22,660.01133787 --> 00:14:24,10.01133787 his body's not regulating. 192 00:14:24,460.01133787 --> 00:14:25,180.01133787 Exactly. 193 00:14:25,430.01133787 --> 00:14:28,330.01133787 I kept saying it was like his thermostat is broken Yeah. 194 00:14:28,420.01133787 --> 00:14:31,90.01133787 So it's frustrating at times. 195 00:14:31,720.01133787 --> 00:14:31,780.01133787 Yeah. 196 00:14:33,65.01133787 --> 00:14:39,565.01133787 I remember the first time I had a, I had a eye specialist tell me, this is before I went to that bigger hospital. 197 00:14:39,625.01133787 --> 00:14:44,845.01133787 I told him, my husband has a pupil, and one pupil would be huge and the other one would be really small. 198 00:14:44,995.01133787 --> 00:14:47,815.01133787 And He goes, there's no way you can see that with the naked eye. 199 00:14:48,115.01133787 --> 00:14:51,205.01133787 So I'm like, now I'm on a mission 'cause I know I'm not crazy. 200 00:14:51,255.01133787 --> 00:14:55,555.01133787 I did actually capture photos on a couple of occasions, and I. 201 00:14:55,610.01133787 --> 00:15:00,960.01133787 Called that eye doctor and canceled the appointment I ended up finding, a specialist for my husband. 202 00:15:00,960.01133787 --> 00:15:02,970.01133787 And they're like, oh, yeah, we know what that is. 203 00:15:03,30.01133787 --> 00:15:05,460.01133787 So crazy because I wasn't the crazy one. 204 00:15:05,610.01133787 --> 00:15:09,30.01133787 I was dealing with somebody that wasn't educated in their own field. 205 00:15:09,90.01133787 --> 00:15:09,720.01133787 Absolutely. 206 00:15:09,930.01133787 --> 00:15:11,190.01133787 I'm gonna take you back again. 207 00:15:11,355.01133787 --> 00:15:11,645.01133787 Okay. 208 00:15:12,690.01133787 --> 00:15:15,900.01133787 So through this, your life has completely changed. 209 00:15:15,900.01133787 --> 00:15:21,720.01133787 You've had to give up all of the things that you love, your motorcycles, fixing cars, all of the things. 210 00:15:21,720.01133787 --> 00:15:21,810.01133787 Mm-hmm. 211 00:15:22,310.01133787 --> 00:15:56,130.01133787 So not how has life changed, but what have you done, I guess, to pivot what now brings you joy? What are the things that you guys can do together that you enjoy? How are you navigating this for you? What are you taking time to do for yourself? Well, we did actually recently, last December, decided to plan our first big trip since injury, and I'm like, my God, how am how you going to make this work? You know, overstimulated, I mean, we're talking international airports, right? Hmm. 212 00:15:56,630.01133787 --> 00:16:02,750.01133787 So I, I had a friend of mine actually called me up and she's like, Hey, Robin, how about going to Mexico? Let's go. 213 00:16:02,750.01133787 --> 00:16:03,680.01133787 you need to get away. 214 00:16:04,310.01133787 --> 00:16:05,240.01133787 And I'm like, okay. 215 00:16:05,300.01133787 --> 00:16:11,90.01133787 So ended up having a friend fly in from Seattle to watch my dog because he can't be kenneled. 216 00:16:11,190.01133787 --> 00:16:13,830.01133787 we went with a friend to Riviera May. 217 00:16:14,425.01133787 --> 00:16:14,995.01133787 Mexico. 218 00:16:15,45.01133787 --> 00:16:19,605.01133787 we used the tools that I learned to help decrease the stimulation. 219 00:16:19,635.01133787 --> 00:16:23,265.01133787 Number one I took a person with that is very travel savvy. 220 00:16:23,355.01133787 --> 00:16:25,215.01133787 I didn't have to think, I didn't have to plan. 221 00:16:25,245.01133787 --> 00:16:28,965.01133787 All I needed to do was take care of my husband, so that took a lot off my plate. 222 00:16:28,965.01133787 --> 00:16:31,575.01133787 She did all the planning going through the airport. 223 00:16:31,575.01133787 --> 00:16:33,195.01133787 I made sure my husband had a hat. 224 00:16:33,345.01133787 --> 00:16:38,805.01133787 I made sure that he had dark sunglasses, so we were reducing the peripheral vision. 225 00:16:38,865.01133787 --> 00:16:40,485.0113379 I packed everything for him. 226 00:16:40,680.0113379 --> 00:16:42,450.0113379 I took care of all the meds. 227 00:16:42,450.0113379 --> 00:16:44,910.0113379 clothing, toiletries, everything he would need. 228 00:16:44,920.0113379 --> 00:17:01,420.0113379 We ended up at a resort where we all had a a very large room, and if we were in an area that was too overstimulating, he would just go back to the room where he could be just by himself to recoup from that exposure of too many people. 229 00:17:01,480.0113379 --> 00:17:04,900.0113379 We also stayed in a resort where it was adults only. 230 00:17:05,80.0113379 --> 00:17:10,970.0113379 On that side, it was less people we went in the off season, so there would be less people. 231 00:17:12,690.0113379 --> 00:17:13,830.0113379 it can be done. 232 00:17:13,830.0113379 --> 00:17:19,800.0113379 You just need to be creative and not give choices because they can't make those choices. 233 00:17:19,800.0113379 --> 00:17:23,730.0113379 You need to make them for them, my husband feels, vulnerable. 234 00:17:23,780.0113379 --> 00:17:29,300.0113379 he had to totally pivot and entrust everything that I did for him, for every aspect. 235 00:17:29,400.0113379 --> 00:17:32,970.0113379 the roles changed in the relationship significantly. 236 00:17:33,20.0113379 --> 00:17:35,120.0113379 I make time for myself as well. 237 00:17:35,120.0113379 --> 00:17:43,720.0113379 I did go on another trip, but I had a support system of friends managing everything back home while I was gone for a whole week. 238 00:17:43,780.0113379 --> 00:17:45,610.0113379 I'd never done that, ever. 239 00:17:45,610.0113379 --> 00:17:46,331.0113379 It was the first Time. 240 00:17:46,336.0113379 --> 00:17:46,540.0113379 Good for you. 241 00:17:46,540.0113379 --> 00:17:47,710.0113379 It was February. 242 00:17:47,770.0113379 --> 00:17:50,530.0113379 You know, I do make time for myself. 243 00:17:50,530.0113379 --> 00:17:51,940.0113379 I've learned to make time. 244 00:17:53,755.0113379 --> 00:17:57,925.0113379 I've learned and trust friends with what's most important to me. 245 00:17:58,135.0113379 --> 00:18:04,15.0113379 And that's hard to hand over with somebody that can't make choices for themself. 246 00:18:04,255.0113379 --> 00:18:05,515.0113379 That's very hard. 247 00:18:05,675.0113379 --> 00:18:16,35.0113379 one of the reasons why that is so hard is because, I brought my husband and he had to go in for seizure testing, I brought him into the hospital for seizure testing. 248 00:18:16,35.0113379 --> 00:18:17,595.0113379 He was supposed to be there for a week. 249 00:18:17,685.0113379 --> 00:18:26,795.0113379 I pulled into work as I always did and continued, to call my husband before work and we'd have a brief conversation and then he would go nap and I would go to work. 250 00:18:27,165.0113379 --> 00:18:28,95.0113379 Watch the cameras. 251 00:18:28,215.0113379 --> 00:18:31,935.0113379 Well, I called and he didn't answer and I'm like, you've got to be kidding me. 252 00:18:32,55.0113379 --> 00:18:34,95.0113379 You know, I know he's not sleeping. 253 00:18:34,95.0113379 --> 00:18:39,45.0113379 'cause people with brain injury have a really weird, if any sleep, right? Mm-hmm. 254 00:18:40,215.0113379 --> 00:18:46,545.0113379 So then I called the hospital and I asked to speak to that area's desk and they said, well, he's not here. 255 00:18:47,450.0113379 --> 00:18:57,410.0113379 And I'm like, my stomach just, I'm like, are you kidding me? Did he have a mood swing and say, screw this and freaking leave, because I could totally see him doing that. 256 00:18:57,560.0113379 --> 00:18:58,700.0113379 I am not kidding you. 257 00:18:58,820.0113379 --> 00:18:59,840.0113379 I called my boss. 258 00:18:59,840.0113379 --> 00:19:00,980.0113379 I said, I gotta go. 259 00:19:01,130.0113379 --> 00:19:01,790.0113379 I gotta go. 260 00:19:01,880.0113379 --> 00:19:04,820.0113379 I'm in my truck and I am literally flying. 261 00:19:04,870.0113379 --> 00:19:10,830.0113379 To the hospital and I'm calling friends of mine on the way and I am like freaking out. 262 00:19:11,10.0113379 --> 00:19:13,140.0113379 I'm on a mission, didn't even care where I parked. 263 00:19:13,140.0113379 --> 00:19:19,350.0113379 My truck walked on that floor and I'm like, where is he? And you better find him now. 264 00:19:19,500.0113379 --> 00:19:20,160.0113379 He was there. 265 00:19:20,250.0113379 --> 00:19:31,50.0113379 There was a nurse that came in after I had left earlier the previous day, and keep in mind I had said, don't have him sign anything without me being present. 266 00:19:31,110.0113379 --> 00:19:33,60.0113379 My husband has a brain injury. 267 00:19:33,210.0113379 --> 00:19:35,400.0113379 If you need something, please call me. 268 00:19:35,550.0113379 --> 00:19:38,220.0113379 We can do a three-way call or I can stop in. 269 00:19:38,310.0113379 --> 00:19:41,490.0113379 Well, somebody seemed to forget that and they had 'em sign something. 270 00:19:42,210.0113379 --> 00:19:47,340.0113379 I had found out when I had arrived there, and it was that nobody have contact. 271 00:19:47,340.0113379 --> 00:19:48,570.0113379 That's why they told me. 272 00:19:48,930.0113379 --> 00:19:49,800.0113379 He wasn't there. 273 00:19:49,800.0113379 --> 00:19:51,720.0113379 Gosh, I'm not even kidding you. 274 00:19:51,810.0113379 --> 00:19:59,430.0113379 The girlfriend I was telling you that sat through those surgeries with me, her daughter at that time was a Milwaukee County police officer. 275 00:20:00,60.0113379 --> 00:20:04,740.0113379 I was like this far from calling her saying, I need help. 276 00:20:04,890.0113379 --> 00:20:05,820.0113379 Call your daughter. 277 00:20:05,940.0113379 --> 00:20:08,160.0113379 Because she was in that jurisdiction. 278 00:20:09,360.0113379 --> 00:20:10,20.0113379 Oh my gosh. 279 00:20:10,20.0113379 --> 00:20:13,840.0113379 I'm glad you can laugh about it now, but it's like our husbands have invisible diseases. 280 00:20:14,530.0113379 --> 00:20:14,920.0113379 Yeah. 281 00:20:14,975.0113379 --> 00:20:21,635.0113379 and for a medical professional to not recognize that or read his chart to know that the heart attack that just gave you. 282 00:20:21,735.0113379 --> 00:20:34,135.0113379 even in my local hospital, I mean, I brought him in and for, it was a intense migraine to the point where he was, I had pulled in my vehicle, grabbed a wheelchair, got him in and was rolling him into the er. 283 00:20:34,835.0113379 --> 00:20:38,525.0113379 Area, which I couldn't even keep 'em there because the lights were too bright. 284 00:20:38,915.0113379 --> 00:20:45,425.0113379 So I wheeled them past that area and then, you know, checked him in and told him what, what it, what it was for. 285 00:20:45,515.0113379 --> 00:20:49,475.0113379 my local hospital brought him back and I'm like, I have to come back with him. 286 00:20:49,575.0113379 --> 00:20:50,745.0113379 it was during COVID. 287 00:20:50,805.0113379 --> 00:20:52,515.0113379 And they're like, well, you can't come back. 288 00:20:52,565.0113379 --> 00:20:54,575.0113379 at that point, the migraine was bad. 289 00:20:55,405.0113379 --> 00:20:57,235.0113379 He was losing it. 290 00:20:57,355.0113379 --> 00:21:00,115.0113379 He threw a water bottle, he was swearing. 291 00:21:00,725.0113379 --> 00:21:02,885.0113379 I looked at her and I just said, you'll be back. 292 00:21:03,55.0113379 --> 00:21:10,245.0113379 Sure enough, they come back I said, the first thing you need to do is sedate him because this is just going to escalate. 293 00:21:10,295.0113379 --> 00:21:15,95.0113379 I'm looking at a poster on the wall that says something about violence in the ER room. 294 00:21:15,95.0113379 --> 00:21:20,525.0113379 I'm thinking, what do people do that have brain injuries, that have mood swings? They have no control of that. 295 00:21:20,615.0113379 --> 00:21:25,25.0113379 Over 50% of the time, they have no recollection of what they even did. 296 00:21:26,445.0113379 --> 00:21:42,870.0113379 Are you gonna call the police on somebody that obviously has a medical condition that they can't control, right? that puts fear into you too, But like I said, the things that I wish that I knew the first year is how many specialists are involved. 297 00:21:43,50.0113379 --> 00:21:47,880.0113379 The hardest part of everything is acceptance of the things that you cannot change. 298 00:21:47,910.0113379 --> 00:21:51,390.0113379 One of the best things that I did do was I journaled every day. 299 00:21:51,680.0113379 --> 00:21:58,310.0113379 I paid attention to my husband, all of the subtleties that were not his norm, the things that were changing. 300 00:21:58,310.0113379 --> 00:22:05,510.0113379 I have spirals of handwritten notes of all of the things that were not normal, and I brought that journal to appointments. 301 00:22:05,600.0113379 --> 00:22:07,910.0113379 The psychologist and the psychiatrist. 302 00:22:08,30.0113379 --> 00:22:09,260.0113379 That was a must do. 303 00:22:09,360.0113379 --> 00:22:13,20.0113379 if somebody offers, maybe they could mow your yard, fix dinner. 304 00:22:13,520.0113379 --> 00:22:17,690.0113379 Learn to never take anything personal with those mood swings. 305 00:22:17,690.0113379 --> 00:22:18,620.0113379 Let it roll off. 306 00:22:18,860.0113379 --> 00:22:20,510.0113379 You know, it's not directed at you. 307 00:22:20,550.0113379 --> 00:22:22,170.0113379 it's not yourself speaking. 308 00:22:22,230.0113379 --> 00:22:24,60.0113379 They're not a narcissist. 309 00:22:24,120.0113379 --> 00:22:27,140.0113379 They can't control it, and you can't take it personal. 310 00:22:27,665.0113379 --> 00:22:31,955.0113379 My husband is still nonverbal and so we haven't experienced any of that. 311 00:22:31,955.0113379 --> 00:22:38,25.0113379 But, to hear you women going through that part of brain injury is heartbreaking. 312 00:22:38,55.0113379 --> 00:22:41,475.0113379 And to be able to say that, don't take it personal. 313 00:22:41,505.0113379 --> 00:22:45,685.0113379 I can only imagine That took a lot to get to that point. 314 00:22:45,865.0113379 --> 00:22:51,160.0113379 And the biggest thing that the psychologist taught me was, do not engage. 315 00:22:51,220.0113379 --> 00:22:51,310.0113379 Mm-hmm. 316 00:22:51,370.0113379 --> 00:22:52,420.0113379 Do not engage. 317 00:22:52,420.0113379 --> 00:22:55,450.0113379 And that's the biggest thing that I see and read. 318 00:22:55,540.0113379 --> 00:23:02,800.0113379 That turns around and it escalates to the higher levels to where it turns into a rage and people get hurt. 319 00:23:02,860.0113379 --> 00:23:05,290.0113379 Doris get slammed, things get broken. 320 00:23:05,290.0113379 --> 00:23:06,220.0113379 And he was. 321 00:23:06,425.0113379 --> 00:23:11,705.0113379 The psychologist was absolutely right because the moment you just shut up, let it roll off. 322 00:23:11,795.0113379 --> 00:23:12,995.0113379 Do not engage. 323 00:23:13,85.0113379 --> 00:23:15,275.0113379 Leave the room, do what you need to do. 324 00:23:15,425.0113379 --> 00:23:23,85.0113379 It deescalates it, So that is a very tall order and people want to fight back because it's an instinct. 325 00:23:23,950.0113379 --> 00:23:29,900.0113379 That would be me, but It had to be done until they could get the medications right. 326 00:23:30,110.0113379 --> 00:23:31,340.0113379 And that takes a while. 327 00:23:31,820.0113379 --> 00:23:33,140.0113379 Everybody's different. 328 00:23:33,140.0113379 --> 00:23:35,120.0113379 So patience is tough. 329 00:23:35,220.0113379 --> 00:23:39,750.0113379 also when you take care of yourself and you go for a vacation that you might. 330 00:23:40,5.0113379 --> 00:23:48,855.0113379 Get one day or getting a, a manicure or going for a drive or a walk to clear your head do something nice for yourself. 331 00:23:48,885.0113379 --> 00:23:52,845.0113379 what was really hard was not feeling guilty about doing that. 332 00:23:52,875.0113379 --> 00:23:57,45.0113379 Feeling like you're a horrible person because you left your spouse behind. 333 00:23:57,105.0113379 --> 00:24:02,15.0113379 That would've done those things with you prior is like a roller coaster. 334 00:24:02,15.0113379 --> 00:24:02,585.0113379 Mm-hmm. 335 00:24:03,890.0113379 --> 00:24:05,120.0113379 That is really hard. 336 00:24:05,120.0113379 --> 00:24:08,150.0113379 Ambiguous loss is very real. 337 00:24:08,210.0113379 --> 00:24:09,140.0113379 Absolutely Ambiguous. 338 00:24:09,140.0113379 --> 00:24:15,660.0113379 Loss is, and a lot of people, you're grieving, what was what could have been, but can't be. 339 00:24:15,660.0113379 --> 00:24:16,170.0113379 Mm-hmm. 340 00:24:16,890.0113379 --> 00:24:19,470.0113379 But you know, at the end of the day, I'm not widowed. 341 00:24:19,560.0113379 --> 00:24:29,80.0113379 we managed to get my husband off a decent amount of medications because I was very concerned about what that was going to be as a repercussion years later. 342 00:24:29,180.0113379 --> 00:24:51,620.0113379 I think now my biggest fear is, and I need to work on, is what do I do if something happens to me? I think that's one of our biggest fears as wives of men with TBIs, we're the anchor, right? What happens to him? what's the plan? how can you give them the most independent life with dignity? and respect? That terrifies me. 343 00:24:51,710.0113379 --> 00:24:53,300.0113379 Yeah, it terrifies me. 344 00:24:53,780.0113379 --> 00:24:55,400.0113379 That's why we need to take care of ourselves. 345 00:24:55,740.0113379 --> 00:24:58,50.0113379 Because I don't have family to do that. 346 00:24:58,880.0113379 --> 00:25:01,790.0113379 and we've worked so hard to keep them out of institutions. 347 00:25:01,855.0113379 --> 00:25:02,235.0113379 Oh yeah. 348 00:25:02,535.0113379 --> 00:25:03,435.0113379 Yeah, it is. 349 00:25:03,575.0113379 --> 00:25:06,965.0113379 I need to get something in place for that and that will happen. 350 00:25:07,565.0113379 --> 00:25:16,75.0113379 As far as the financial end, when you think about where they would be without you planning for that is something that I've been working diligently on. 351 00:25:16,125.0113379 --> 00:25:17,615.0113379 saving, needs to happen. 352 00:25:17,615.0113379 --> 00:25:18,785.0113379 And it's not cheap. 353 00:25:18,925.0113379 --> 00:25:23,865.0113379 when people talk about Medicare, It really doesn't cover the medication end. 354 00:25:23,895.0113379 --> 00:25:26,525.0113379 you can pick up that plan, but it's expensive. 355 00:25:26,525.0113379 --> 00:25:36,720.0113379 there was one point where we were paying, $1,200 a month in medications, and that was after Medicare paid 1200 plus. 356 00:25:36,840.0113379 --> 00:25:37,555.0113379 I had a mortgage. 357 00:25:37,555.0113379 --> 00:25:41,65.0113379 You get a car payment, utility, food, gas, whatever. 358 00:25:41,125.0113379 --> 00:25:50,875.0113379 Who could do that on one income? it can be very overwhelming, but that's where you get creative and use every resource you have to ask questions. 359 00:25:50,875.0113379 --> 00:25:53,275.0113379 And if you don't know, that's totally fine. 360 00:25:53,275.0113379 --> 00:25:56,815.0113379 But there's people that know, and that's why podcast is so important. 361 00:25:56,935.0113379 --> 00:26:04,765.0113379 You know, when I went to take that trip, I'm like, oh my God, how I going to travel with a husband with a brain injury? I had better lock down some insurance because. 362 00:26:04,835.0113379 --> 00:26:07,985.0113379 God forbid we need to go to a hospital in Mexico. 363 00:26:08,65.0113379 --> 00:26:12,745.0113379 I am so thankful that one of the women stepped up and said, Hey, I can help you. 364 00:26:12,795.0113379 --> 00:26:14,85.0113379 she was incredible. 365 00:26:14,85.0113379 --> 00:26:17,445.0113379 And then we shared pictures back and forth and we formed a friendship. 366 00:26:17,445.0113379 --> 00:26:20,175.0113379 we don't live in the same state or anywhere near each other. 367 00:26:20,810.0113379 --> 00:26:24,80.0113379 I read a lot of stories and get ideas from other women. 368 00:26:24,290.0113379 --> 00:26:29,60.0113379 We didn't know we needed a handbook for this thing that we fell into one day. 369 00:26:29,270.0113379 --> 00:26:30,200.0113379 There's no handbook. 370 00:26:30,470.0113379 --> 00:26:32,30.0113379 There was no preparation. 371 00:26:32,270.0113379 --> 00:26:37,310.0113379 It was just like, here you go, and there's always the comment of, no, TBI is the same. 372 00:26:37,390.0113379 --> 00:26:43,540.0113379 So being able to have a platform where we can be that hope for other women, I think is beautiful. 373 00:26:43,600.0113379 --> 00:26:59,360.0113379 And I appreciate you so much and your story, Robin, and your bravery and your strength and your love for your husband, it shows in your story and I think that you're going to be a blessing for other women who wake up and find themselves in similar shoes. 374 00:26:59,390.0113379 --> 00:27:00,530.0113379 I really truly thank you. 375 00:27:01,850.0113379 --> 00:27:03,380.0113379 I appreciate the opportunity. 376 00:27:03,380.0113379 --> 00:27:12,760.0113379 I, was very reluctant, but I know these resources need to be out there for these women I know beyond a doubt if the tables were turned, my husband would be all in. 377 00:27:12,810.0113379 --> 00:27:13,950.0113379 Just like I am. 378 00:27:14,170.0113379 --> 00:27:17,590.0113379 when his accident happened, we were married for 30 years. 379 00:27:17,590.0113379 --> 00:27:22,450.0113379 Those birthdays, those anniversaries that he doesn't remember now I go out and buy my own cake. 380 00:27:22,500.0113379 --> 00:27:23,520.0113379 my own flowers. 381 00:27:23,580.0113379 --> 00:27:24,180.0113379 Done. 382 00:27:24,210.0113379 --> 00:27:26,70.0113379 Prior to that, he showered me. 383 00:27:26,70.0113379 --> 00:27:28,440.0113379 I was very grateful for all those years. 384 00:27:28,560.0113379 --> 00:27:35,700.0113379 And you can't take that personally either 'cause they have no concept in many cases of what day it is or what time it is. 385 00:27:35,910.0113379 --> 00:27:37,410.0113379 No concept of it at all. 386 00:27:38,520.0113379 --> 00:27:41,850.0113379 We can take the silver lining in that we always get what we want. 387 00:27:41,850.0113379 --> 00:27:43,200.0113379 That's for those special occasions. 388 00:27:43,250.0113379 --> 00:27:46,490.0113379 And I make all the damn decisions so I can get whatever I want. 389 00:27:48,325.0113379 --> 00:27:56,520.0113379 He just along for the ride, but he is been, he is been a great sport and I'm really thankful for that and, extremely thankful that I'm not widowed. 390 00:27:56,610.0113379 --> 00:27:57,270.0113379 Absolutely. 391 00:27:57,795.0113379 --> 00:28:00,225.0113379 God's got us here for big things, my friend. 392 00:28:00,355.0113379 --> 00:28:06,285.0113379 I hope that if there's anything that comes out of this, if it helps even one other person, I will be happy. 393 00:28:06,415.0113379 --> 00:28:06,895.0113379 Just one. 394 00:28:06,955.0113379 --> 00:28:07,967.2562358 It will for sure. 395 00:28:08,657.2562358 --> 00:28:11,567.2562358 Thanks for tuning in to real lives of TBI, wives friends. 396 00:28:11,957.2562358 --> 00:28:14,687.2562358 If this episode spoke to you, please subscribe. 397 00:28:14,687.2562358 --> 00:28:18,77.2562358 Leave a review and share it with another TBI wife who needs to hear it. 398 00:28:18,527.2562358 --> 00:28:22,7.2562358 You are seen, you are supported, and you are stronger than you know.