Transcript
Today I’m going to talk to you about caregiving in the context of CSF leak, but I’m going to be brutally honest. This talk is going to be hard for me. It’s likely to get emotional, but that’s okay. We’ll all suffer through this together.
For several years, I was the caregiver for my wife, Connie Rim. Some of you probably know Connie virtually through her Facebook page, My CSF Leak Journey, or even as a patient. We had the pleasure of knowing each other for six years. Five of those years, she had a CSF leak. Four of those years, we were together as a couple, and two we were just friends. Two and a half of the years, we were married. I’ll make sure to give you guys a quiz when we’re done.
Her original leak was caused by spinal surgery that happened nearly a year to the day of our first date. A couple months later, she broke up with me – not because I did anything wrong. She simply said, “I have no idea how long it’s going to take me to get better, so I’d like you to go live your best life.” Having her break up with me was absolutely brutal. I had just uprooted from Atlanta, Georgia, and moved across the country to San Diego just for her. But in retrospect, it was one of the most unselfish things I had ever seen. She was trying to protect me. She didn’t want me to spend any part of my life having to deal with this condition or having to deal with her. In her mind, there were just too many unknowns.
Well, I didn’t go away – I stuck around. We continued to call and text nearly daily. I visited with her at her parents’ house. We would simply sit and talk about how she was doing, what she was learning about this condition, new symptoms she was having, next steps, or what I was up to. A couple years of doing this, we got closer in a way we hadn’t before. Her career – her entire life – had been stripped away because of the leak, so her connection with me, friends, and family was all she really had. The connection – the love – was all she had to cling to.
A couple years later, during one of our frequent talks, we decided we didn’t need to be apart any longer and that I would take care of her full-time. This is when the fear started. I had no idea what it was like to be a caregiver. I had no idea how much work would be involved or what I needed to do. All I knew was that at this time, this was still Connie, and I still wanted to be with her. And somehow, someway, I wanted to be a part of her life, and I wanted to help be a part of her solution.
So, this talk is about caregiving, but I can’t really tell you how to be a caregiver. Everyone is different. Everyone has different needs. Connie’s case is definitely an extreme one. Her head pain was relentless. Her baseline pain was a five to a seven. Sometimes it was a little better, sometimes worse, but it didn’t draw below her baseline very often.
All of Connie’s days were spent in bed. She could spend an hour, maybe a little bit more on good days. On bad days, she had 15 minutes out of bed before the pain was just too much to handle. Post-surgery – her original surgery – she went from a very independent woman to someone who needed help doing everything. We set up a system where she always had fresh ice packs to help with her head pain. And if you’re a leaker right now and you haven’t heard of headache hats, please go look those up online – they are incredibly helpful.
I took care of all the household chores – the cooking, the cleaning. She had fresh coffee for her when she woke up. I took her to doctor’s appointments, sometimes across the country, and from time to time called insurance companies. I sat with her during telehealth appointments because her memory was getting worse and worse. If I could think of anything that made her life easier, then that’s what I set out to do.
Again, I can’t tell you how to be a caregiver, but I can share a few things that I learned along the way that will not only help you as a caregiver but it’ll help in life too. Being a caregiver is crazy scary. Having a CSF leak, as many of you know, is crazy scary. It’s debilitating. It’s brutally painful. I was terrified. At first, I had no clue what to do. I didn’t want to screw anything up. I didn’t want to make things worse. But it’s normal not to know what you’re doing. If you did, it wouldn’t be called growth.
The first thing that I would suggest is to do anything and everything you can to establish a routine. Again, how can I make this person’s life easier? Communicate with each other – that’s essential. Stop asking how they’re feeling. They get that question all the time, 24/7. I promise they’ll let you know. You should be able to see it in their face and their mannerisms. I could simply walk into the room and immediately see or know exactly how she was feeling. Was this moment a good or a bad one? Did she need a bit of cheering up, a dirty joke, or for me to simply to hold her hand? I could usually walk in and know, and you can too. If you can’t now, then you will very soon.
Again, ask yourself what you can do. Ask yourself what they used to do that they can’t do now, or simply talk through it. What brought them joy during the day? Was it as simple as a tea in the afternoon? Take the initiative and figure things out together, but don’t sit back and wait to be told what to do. I’ve always thought that doing more was so much better than not doing anything at all in most situations.
There’s a really cool story that illustrates this. There’s a professor that had two classes. In one of his classes, the instructions were to make the highest-quality clay pot that they possibly could. The other class was to make the most clay pots that they possibly could during that same amount of time. At the end of the semester, not only did the class making the most clay pots have more pots, but they also had the highest quality because practice makes perfect.
You have to get in there and do it. Caregiving is exactly like anything else you want to be good at. You can read, study, figure out different techniques and skills needed, watch videos, but if you’re not getting your hands dirty and you’re not doing it, you’re not going to improve. You really only have two jobs: one is making life easier, like I’ve been talking about. The other is being their go-to person for support. And support could mean being a sounding board for frustration. It could be that shoulder to cry on. It could be advocating to doctors when they don’t have the ability. It could be that person who holds their hand when the pain is so bad they physically can’t do anything else.
And it’s when things get bad, please keep this in mind: you can always quit tomorrow, because tomorrow never comes. Your mindset is everything. This is someone that I love tremendously. I care about her, and I’m quite sure if the tables were turned, she would have done the same thing for me without question. I’m not saying it’s easy – it’s not. It’s hard, but shifting your mindset is incredibly helpful. It’s not that you have to do something – it’s that you get to do something. And I can’t talk about that enough – it’s not that you have to do something; it’s that you get to do something.
Connie was one of the most independent people I’ve ever known. Just get out of her way if she wanted to do something. If there was anything, she just figured it out and did it. At any given moment, lying in bed in pain, she would give anything to be able to get up and clean a toilet. Maybe not a toilet – maybe that was more my wishes, not hers, but you get what I’m saying. She wants to help. She wants to be my partner in crime cleaning the house together. She wants to be cooking dinner with me. She wants to take the dog out, but she can’t. It’s not that I have to do something – it’s that I get to do something. If you start applying that to your life, not just in caregiving, watch how your life will change.
Being a caregiver is tough, but what they’re going through is much tougher. Anything and everything you can do to bring them joy is a win for both of you. I used to tell Connie the most inappropriate jokes – and I could never repeat any of those here – but she always said that I could make her laugh, even at her worst. If only in an instant, we both felt that joy. Let them feel normal, and I can’t stress that enough either. If they want to get out of bed and wash the dog, then great, let them. Just know that you may need to finish it up. Don’t hold back from letting them feel normal unless it means rearranging furniture or anything else that might get them hurt or make things worse – and yes, that actually happened.
Let them be in charge of something. Now, you might not want to be like me in this case, because Connie was in charge of our Amazon account, and most of you – some of you know Connie – but don’t know that she was obsessed with organization and efficiency. So I had every type of gadget and plastic container you could possibly imagine in our house, and occasionally she even bought things that were useful. I never said a word – not ever. Every purchase to me was justified in my mind, even when there was a corrugated Great Wall of China outside of my front door. I never complained. Being able to contribute to the family was huge for her, therefore it was huge to me.
So, while I was a caregiver, one of the most important things I learned was what’s important in my life, and it continues today. I figured out really quickly that taking care of her, there’s no such thing for me as work-life balance. Having a work-life balance is something we’ve been taught, and I’ve learned really quickly that the connection I had with her, the connection I have with friends and family, are so much more important than any work that needed to be done. It’s more important than any deadline. I made it a mission that I wasn’t going to sacrifice times when she needed me with work that needed to be done. She and my personal life come first. Work and life for me aren’t balanced at all.
This wasn’t something that came easily, and I understood. I completely get that bills have to be paid, and I had to make sure that I set clear boundaries with work. I’m in marketing, and I am incredibly lucky to have a great job, a great boss, great owner, and I have their understanding. I work very hard, but my personal life is much more important than what I do for a living. The connections we have during this time on this planet are the most important things. I like to say I work to improve my eulogy, not my resume, and I’ll say that again – work to improve your eulogy, not your resume. And I completely understand that I am standing up in front of a ton of physicians and medical professionals who have dedicated their lives to improving health and fixing leakers. They make giant sacrifices, and I can’t thank you guys enough, but that life isn’t one for me, and I want to make a difference in a different way.
Connie would talk about how her leak was like being in prison. She couldn’t do much and couldn’t go anywhere, and often during my workday, I would simply lay in prison with her for a few minutes, or after work, we’d spend tons of time just talking. We’d talk about the projects I was working on. She’d talk about different people that she had chatted with on her Facebook page when she could. We’d watch movies and documentaries or even Lions playoff games. But during her better moments, we enjoyed each other’s company. We simply spent quality time together. Don’t take those times for granted, and please, take it from me – you don’t know how many you have left.
Take care of yourself, and this is one of the most important messages I could share with you. You have to take care of yourself, or you can’t take care of someone else too. I’ve always liked the concept of the third place. Work and home are places number one and number two, and the third place is just for you. It could be a hobby, or a gym, or anything that would be a short escape. I really love photography. If you’re part of the Facebook page, you’ve seen Connie sent in tons of my photography over the years. I also enjoy running and strength training – those are my third places. I didn’t get to leave the house every day, but I could usually find some time during the week to exercise, take photos, or – because I lived in San Diego – I could do both via hiking. If you’re like me, this is going to feel a little – you’ll feel a little bit guilty at first doing this. Go do it anyway. Start by just taking short walks or anything that gets you out of the house and spending some time just for you. It’s important.
To sum things up, take some initiative and figure out what to do, or figure out what to do together. What’s needed to be done? Where can you contribute? Where can they contribute? Be their voice when needed. Too many times, I’ve been in doctor’s offices and spoke on her behalf because she physically couldn’t do it or couldn’t remember. Shift your mindset. You get to do, rather than you have to. Find and create joy. Do everything you can to let them feel normal. Concentrate on the things that matter in life – connection, love, caring, kindness, and joy. And please, please, please don’t forget to take care of yourself too.