I became a caregiver, literally, overnight

A numb foot on a Sunday afternoon doesn’t sound like the start of a life rewrite, but that’s exactly how it happens for us. One strange sensation turns into tingling up the legs, skin that feels wrong, a rushed trip to the ER, and a night where my partner Steve loses control of his body faster than either of us can understand. If you’ve ever searched for answers in the middle of a medical crisis, you’ll recognize the fear, the confusion, and the way time bends in a hospital hallway.

I walk you through the earliest days of Steve’s transverse myelitis symptoms and the chaotic reality of getting a diagnosis when everything is moving at once. We talk about the practical hurdles too like the fight to get an MRI when claustrophobia is in the way, the early misdirection toward other conditions, and the moment we learn there’s a lesion on his spine. Along the way, I share what it feels like to shift from partner to caregiver in real time, including the raw details of paralysis, catheter care, and the shock of needing to advocate hard when you’re running on no sleep.

We also look beyond the hospital stay into inpatient rehab, physical therapy and occupational therapy, and what it means to come home still carrying medical tasks and a new identity you never asked for. This story is for caregivers, spouses, partners, and anyone trying to understand chronic illness caregiving when the condition isn’t terminal but changes everything for the long haul.

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Transcript

Welcome To The Caregiver’s Path

SPEAKER_00 0:00

This is the Caregiver's Path, a podcast for anyone who has ever found themselves caring for someone they love without a roadmap. I'm Shelly, partner and caregiver to someone living with transverse myelitis. Here we talk about the real stuff. The identity shifts, the hard days, the small victories, and the quiet moments that change you. Whether you're a caregiver, a partner, or someone trying to understand this world, welcome. You belong here. You always hear people say when you're going to tell a story, just start from the beginning. So that's what I'm going to do. I encourage you to grab a cup of coffee, a cup of tea, a drink of your choice, sit back for a few moments, and let me tell you how I became a caregiver. I never know how many details to include, but I think it's important to start from the very beginning of his symptoms because it was so sudden and so drastic the way that we were just plunged into this nightmare, for lack of a better word, really. And I will tell it the way Steve tells it to people, and in the blog that he writes, it was about 2:30 on a Sunday afternoon, just three days after Steve's 75th birthday. He says he feels something on his feet. It feels like something's on the carpet. And so he looks down and there's nothing, but it's just causing this funny feeling in his one of his feet. So we just continue on. I think we're watching the Kansas City Chiefs play. Steve decides he needs to go call his dad. His dad was in his mid-90s at that time, and Steve called him every day around five o'clock ish or so. So Steve puts on his shoes, goes out, and just is gonna walk the halls in the apartment, but he's not gone very long. He comes back and he says, My tingling, my feet are feeling different. I've got tingling going up my legs. And we're thinking, well, maybe your feet legs have just fallen asleep or something. You know, we weren't really sure. He takes a shower, he comes out, and he says, My arm skin, the skin on my arm feels really different. He's kind of getting wobbly at the moment, and he says, I think I need to go to the ER. So by the time we get to the ER, I've got him in a wheelchair and I'm checking him in that way. I don't remember how long we sat in the emergency room. I don't think we were in there very long, and they took him to the back. And as the night progressed, I think we got there. Let me back up a little bit. I think we got there about seven o'clock that night. And throughout the evening, they had him in the emergency room. They put him in a gown and, you know, done all the things that they do back there. And he was just not doing well. When he first got there, he could get up and walk to the bathroom. I had to help him, well, not help him, but I went with him and stood outside the bathroom door because he was walking like he was drunk. As the night progressed, he couldn't even make it to the bathroom. He had to get a bedstop bedside commodore stool, whatever they call it, and they eventually had to put him on a catheter. Now, during this time, they're trying to figure out what's wrong. They're trying to get him into the MRI because they need to figure out what's happening. But Steve is terribly claustrophobic. So they tried a couple of times and it just wasn't working. We ended up down in what I believe is called the critical decision unit. This is probably, I don't know, two or three in the morning by now. And I can't remember what Steve's symptoms are, but I know he's not getting out of bed. And I know at some point, like I said, they put a catheter in him. When I'm recording this, this has been two and a half years ago. So some of these little finer details are gone. At some point, I realize we're gonna be there a while. So I go home, I take a shower, I grab some stuff, and I come back, and when I get back to his room in the critical decision unit, Steve is flailing about. He has no control over his arms or his legs. And this is happening as we find out later when he's eventually diagnosed with transverse myelitis, that this is the myelin on his nerves unraveling. And he's flailing about, he's kicking the bed. I have to go find someone and insist that they get in there and take care of the of Steve. They bring a neurologist in, they give him some medication to calm him down, and then he's fully paralyzed from the shoulders down. He can't move anything. And transverse myelitis, which I'm going to talk about in a future episode, is a tricky condition. It's tricky to diagnose, it's tricky to know what causes it. And although they have a protocol of treatments that they use, there's never really a cure for this. I call his sister and they come and I end up going home to get a few hours of sleep because at this time I'm just I haven't broken down, but I'm pretty close to it. And I don't know. I grab a couple hours of sleep, I get more stuff from from the apartment, I go back to the hospital, and Steve's up in a room now, still paralyzed, and they're going to start some treatment on him. I think it's the IVGV, IGVG, I don't, I don't know what they call it, but he has three rounds of that, and they eventually get him in an MRI, but they have to load him up on Atavan. That's when they come up with diagnosis of transverse myelitis. They first thought maybe it was Guillon Bray, Guillon Beret or something similar. But since he had one side that was affected more than the other, that's where the diagnosis from transverse myelitis has come in. He's got a lesion on his spine now, which they find through the MRI, and that's causing him to be paralyzed. He's in the hospital for 15 days, and I don't remember when he started movement, but he had the first round of treatments, then he had three days of steroids, IV steroids, and then he had five treatments of plasma transfer. And somewhere in that time he started moving, like he could move a finger, he could lift an arm. His right side was really hammered, so his left side seemed to heal quicker than his right side. He couldn't brush his teeth, he couldn't feed himself, so I spent the night in the hospital with him. He couldn't use his call button, and I was feeding him, we were brushing his teeth, he didn't have any bowel control, he was still on a catheter. I just remember thinking, I don't know what I was thinking. I just kind of went with the flow thinking, well, you know, they'll give him treatment and and he'll come home and he'll be fine. After the 15 days in the hospital, he ended up in inpatient PT. I'm gonna say for about a month, and he really progressed from there. And I'm gonna talk a little bit more about all those those things in another episode. He came home, he's still in a catheter. Um, he could walk on a walker with a gate belt, but he had to be put in a wheelchair, like if we were going long distance, like if I had to take him from the apartment to the car to get to PT. He went to PT, I believe, three times a week for two hours each, occupational and PT. So there was just a lot of stuff going on. We were both super tired, and I don't remember, like I said, all the finer details, but I think I gave you, I hope I gave you a bit of an overall bird's eye view of some of the things that was going on during those 40, 40 plus days when he was in the hospital and then when he uh ended up going into inpatient therapy. In future episodes, I'm gonna talk about how they just let Steve come home with me. We had no idea what to do, how to do all the medical things that I was doing, for example, example, you know, twice a day, catheter care, talk about how I was fired from my job and I suddenly just became this caregiver and how our lives just changed overnight, how it changed me as a person, how it changed him as a person, and how it also changed us in our relationship because I am now his caregiver and he's my partner, so it's a really different dynamic. I'm going to talk about what is transverse myelitis and what happens when people are diagnosed with transverse myelitis, and just you know, all the things that surround caregiving, the guilt, the resentment, some of the things that people don't want to talk about, the things that people say, the things that people do, and how, you know, my life and your life as a caregiver, in particular when you're a caregiver of a partner or a spouse with a chronic condition that's not terminal, it's not going to kill them. They're going to be living with it with the rest of their for the rest of their lives and how that really impacts us. So I hope you'll stay tuned and join me next time. As a caregiver, you probably know. I don't know if I can be consistent on episodes, so make sure you check out my website below. Sign up to get updates, and we will keep you notified when a new episode comes out. Until then, take care. Thank you for walking a little of the caregiver's path with me today. If this episode spoke to you, or if you're navigating your own caregiving journey, I'd love to hear your story. You can share your thoughts, questions, or experiences with me on social media. And if you know someone who might need this episode, please pass it along. We grow this community one caregiver at a time. Take care of yourself in whatever way you can today, and I'll meet you back here next time.