Mike George 1/14/25

(This interview has been edited and condensed for length)

Zack:  Tell us a little bit about your caregiver journey. How did it start and how is it today?

Mike:  It was nothing that was planned as in most cases. I'm a parent of three adult children, and our youngest, Ben, he's 32, was born with complex care needs from day one. From the moment of his birth, we knew that things were going to be, not a typical child rearing journey. And the biggest thing for us in those days was that nobody could really give us any guidance on how we would manage a lot of this.

The neonatologist after Ben was born, basically said that we had a very sick baby. He had enlarged liver and spleen. His blood platelet count was too low, and he may not live the day.  It was all a run on sentence. And when you hear the statement of, “he may not live the day,” that's all you hear. You don't hear anything else after that. And, basically, it was trying to determine what went wrong, for lack of a better term, and understand the diagnosis and understand what that meant long term.

But about day four, the pediatric neurologist summarized it, and I can still hear him saying that.  Although I'll say that he was a great support to us. But he said, after our first meeting, that Ben may never walk, talk, or go to school because of all the implications of the virus that he was born with and the lack of normal development neurologically. And that was kind of a nightmare from then on. And it became more of trying to understand how you keep Ben stabilized. You know, any normative pathways of life that you would follow as a parent of a young child. There was none of that. It was more of how you keep him alive and how do we keep ourselves from spiraling downward….it was a journey that had no guidepost and really had no one to help us along the way.

What we did learn, despite all the 24-hour care that he requires, is that… he was basically a genius trapped in a body that didn't work. And it was up to us to see beyond all the disabilities and see all the horrible possibilities of what health outcomes could be, and just love him like any other child and try to give him the support that he needed to live a typical life. So, he went to public school. He needed all kinds of support … there's a whole story around what experience that was. Some of it was good and some of it was horrible.

But basically, it was there's no reason why he can't go to school and learn and get a job like everybody else, despite the fact that he doesn't walk on his own. He can't speak. He uses a communication device. So, the neurologist was kind of right in his predictions. But so what? … 32 years hence, he's become a university graduate, through all kinds of support that the community came around. He uses an electronic communication device that he controls with his eyes to communicate. That was how he learned language. And, you know, he was a genius…. And it was true because he graduated. He was a university graduate, and he went through the same courses that all other students went through. Took him a lot longer, of course, but he was able to do it. And shortly after that, he was able to get a part-time job with one of his professors at the university. And then COVID hit, and everything blew up.

We've found our way through that, and here's where we are today. We haven't quite figured out what the next step is for Ben because a lot of the things that were in place haven't come back yet. But, nevertheless, there's still lots of learning to do and lots of opportunities we know that will come sooner or later.

Zack:  Can you just tell us what happened to your world, especially in work, and your wife and if she worked? Tell us a little bit about that and how you endured all that. And by the way, 32-year-old Ben graduated from college and got a part-time job. Is that neurologist still around?

Mike:  He is. 

Zack:  I hope Ben has something to say to him.

Mike:  He's been retired for a little while, but good point. How did we make out? It was more hell than anything else. I mean, it was survival mode every single day. You're worried about, is the next seizure going to be his last one… in early days, we had 70 panic rushes to the ER because of one thing or another. And it was like a seizure every 3 or 4 days, and we eventually figured out how to manage the milder ones at home, so we didn't have to call 911 every time…. We just did what we had to do. And when you're younger, it's easier to not have to sleep for 72 hours. I couldn't do that now. I'd be in real trouble. But you figure out a way to balance everything. And we did have some family support to take care of our other two kids when we had to be at the hospital or whatever.

Ben had multiple surgeries too. So… there was a children's hospital not in our community, but it was a three-and-a-half-hour drive…. And a lot of the specialists we saw were at that children's hospital. So, what we did when the kids were growing up is we made a vacation out of it, if you can call it that… he needed to see seven or eight different specialists, and we spread it over three or four days…. We went to the hospital in the morning and then did something in the afternoon to try and make it as normal a life for them as possible. But how do you manage a job?... Some close co-workers kind of knew what we were dealing with, but we kept all that private. We didn't share too much with others, partly because it was private. We thought nobody else needs to know, and we didn't want it to impact our career trajectory… There's no way Mike could take on this role because he's got this caregiving job at home.

So, we were purposeful in, I wouldn't say hiding it, but we just didn't share a lot of it. Eventually we got to the point where, we knew we couldn't do it all on our own. And in fact, I think when Ben was about four or five, we brought somebody in. Because prior to that, I was kind of working in day shifts, and my wife, Jan, was working a late evening shift… But that was tough to do. We never saw each other for about three years. But we didn't have any money to hire anybody, and you just kind of do what you had to do…. but that got us into well, you can't keep this pace up. It's going to kill us. And our kids aren't getting the best of us because we're beat to a pulp all the time. And that started us down the road of, okay, how do we find someone and how do we cover these hours and what does that look like and, how do we afford that?

We found a few little funding programs. That was the start of us understanding that it's not a solo act. We had to find a way to build a support team around us, whatever that looks like. And, you know, sometimes that worked and sometimes that didn't. But I guess the biggest thing that I sort of tell people that I'm kind of close with, and I guess I'll share here, is that there's no carefreeness in our life anymore. Everything has to be planned. Everything has to be thought through. You just can't pack a bag, hop on a plane and go somewhere. You have to arrange all kinds of things. So, even going out to any sort of social event, going out to dinner, you can't just go. You have to plan everything. I think that's probably the biggest loss in our life is that carefreeness.  We've become used to it. We know what the limitations are, but some days you think, I just don't want to have to deal with this anymore. Especially if there's things happening in Ben's life that are causing you more stress, and then you have all these work commitments on top of that…some days were really tough.

And I guess one more thing I'll add too… 17 years ago, I was diagnosed with stage 2 colorectal cancer. And I'm convinced that the stress of trying to carry the weight of the world on my shoulders, was a big factor in that happening. There was no family history. I was only in my forties. You know, like three percent of the population is diagnosed with that at that age. So, on top of everything else, that was like, “Oh… I could die here. What's that going to mean for everybody?” ... I had some good health care professionals and that helped a lot. And … you know, I was younger. So that was in my favor in having a full recovery of it.

But, I mean, that's reality. That can happen. The stress of all of this trying to balance everything… and it is 24/7, as you mentioned, Zack…. There are the weekends, but just because they're weekends… is no different than a Monday or a Tuesday. The activities you do may be different, but it's still round the clock here. And all of that eventually takes its toll.

Selma:  Did you share what you were going through with your employer, to ask for some type of support such as flexible work arrangements to make your life easier?

Mike:  So, I guess the short answer is, for many years, I've been an IT, contractor. I would work for a consulting firm that would hire me out to different companies. The companies that I worked for, I really didn't share anything, because I wasn't their employee, number one. But second, I didn't want it to impact… what they thought of my performance. Maybe I should have, but that was just at the time, it just seemed like that's all I was comfortable with…. In the early nineties, I asked for a transfer to Toronto, because they had sick kid’s hospital, and we thought that was the mecca of everything… They covered a lot of the travel expenses and helped set up everything…. So, they in that way, they did help…. So, in that sense they at the right time, when we really had our backs against the wall, that's when we started to share and talk about it. But on a day-to-day, generally we just, you know, this is our burden to carry and we're not going to let it impact our work, or we're trying not to anyway.

Selma:  You mentioned the 70 trips to the ER.  How did you deal with the emotional stress of watching your child go through such trauma?

Mike:  A great question. I wouldn't say we became numb about it, but it became an expectation….it wasn't a surprise every time. But as you got to the 65th and 66th and 67th, you dreaded it every time. So, yeah it does take a toll. You've lost a lot of that time together just as a couple. Because you're sitting in an ER listening to some good doctors and some not good doctors, and you're trying to manage all of that…. But again, it's hopping in an ambulance 70 times a year. It's not good for your mental health, but you can't just say, “Okay, I'm not going this time, Ben. Sorry.” You got to go…. That just was our way of living. It was a horrible burden that was placed on us, and at that time, we were still questioning what did we do so wrong to deserve all of this? But you just did it. And you found a way to pick yourself up the next day. And it created this, drive for questioning, why…. What's the solution? We can't hop in an ambulance every day…. Ben still has seizures, but we manage them at home. And then you just get on with your day.

… There were people who gave up on us that said, “Well, you know what? There's nothing really anybody can do to help you. This is the way it is. Sorry.” And kind of walked away. And we developed an awareness and a keenness to see, can this person help us or not? And to this day, we have no patience for that anymore. If you can't help me, I'm going to find somebody else. There's got to be somebody else. Right? … Ben has taught us how to live our lives.

Zack:  If you bumped into young Mike and his wife just getting their news 32 years ago, what are a couple of things that you would tell them to prepare for what's ahead?

Mike:  I actually wrote a post many years ago about that…. What I would tell them is that it's going to be rough. There's no way around it…. I would tell them… focus maybe deliberately on developing their relationship as husband and wife, as partners whatever that is, because that's critical. You have to be in it together to do it. And if you're a single parent, find someone who can help you with all of that. I tell people to believe in a future that's bigger than the past, and that things are horrible now, but don't let those visions of what could be get dampened too much. It'll take a long time. It'll take a while but keep that first and foremost.

And the other reality is that it's a huge financial burden. If I knew…  then, I probably would've managed things differently, but you're so much in the weeds. You're just trying to get by, you know, day-by-day, hour-by-hour… I remember… it was one of the 70 ER visits. We were young and just starting out as a family. And I went to the ATM at the hospital to get some money out, and I had $42 in my account. That's it…. That's another level of, like, oh, that's all I got. And the lunch you get is $21. Right? So, it's just like, now what? That's a whole other level of things… that is a reality, unfortunately, of things. But if you kind of know about those ahead of time, maybe you can prepare yourself or at least do some better planning.

Selma:  You mentioned that 32 years ago when you stepped into this situation with your son, there wasn't much out there in terms of support and resources for families going through this. Has that landscape changed?

Mike:  Well, so in 1992 there was no high-speed Internet. There was no Facebook. It was writing letters and calling people. That's the only way that you could find support groups. There wasn't a whole lot…. But today, yes. I mean, there are all kinds of support groups for you to get into. I would hesitate, quite honestly, to get too involved in a Facebook group, because there's thousands of them.  And what they tend to be is very negative. A lot of venting…. There are never any solutions. It's all, here's everything that's wrong. And for me, that's not what I'm looking for…. But there are local groups and there's groups online, lot of advocacy groups that can help you with how you find support. And if it's related to a medical condition, if there's a rare disease or something, there's things you can find and usually those are pretty good. But in terms of accessing resources, they tend to be very localized, but there are a lot of things. Back 32 years ago, there was nothing. There was your hospital and your family doctor, and that's all you knew.

Zack:  Do you have some tips for somebody who perhaps has never stepped into this role? Any tips as to what to say, to help people with their empathy, their sensitivity, their self-awareness?

Mike: I think early on, we didn't want to be different from anybody else. Maybe that's why we didn't share it with a whole lot of people. It was more just accepting me as Mike, not that I'm a caregiver and have this 24/7 responsibility. Just start there and develop the relationship and just have typical, quote unquote, normal conversations with me. And start to learn about what things I like and what things you like. Not necessarily focus on all the things that people are afraid to ask sometimes. But if you know that I have this responsibility, what you want to avoid is to be asked questions that are tone deaf in the sense that, on Monday morning, how was your weekend? It's like, do you really want to know? Of course, I'm not going to share with you what my weekend was really like…. I don't want to bring you down… It's kind of none of your business. And… I don't really look at life that way. Like, oh, the weekends here are great. I could kick my feet up and just binge watch Netflix or whatever.  That's just not part of what I do. Watch the tone deafness, but where you start with that is let's just learn about each other and forget about the other pieces.

Zack:  Can you tell us a little bit about Soaring Families and how you can potentially support working caregivers and where to find you?

Mike:  So,… this is paid support, people who do this for a living because that's really the only practical way of surviving 32 years is building that team around you…. Basically, the impetus of creating Soaring Families… we created it in 2015… we wanted to find a way to help families avoid a lot of the pitfalls that we fell into. To demonstrate that the journey is horrendous at times, but you know what? You can get through it, and here's how we want to help guide you through that journey because it can be, not just filled with stress and overwhelm, but it can be a journey to fulfillment and joy in your life. As tough as that is to see for many people, it can actually be that. And so that's what Soaring Families helps families do.

The biggest thing that we do help families with is finding/building that support team around them. How do you do that? Because it's not obvious for people. It wasn't obvious for us on how to do it. And even though we had managed teams, or we continue to manage and lead teams in our work lives, it didn't translate easily into your home life. We spent a lot of time, made a lot of mistakes, but now we've got the formula to help you do that every single time. So that's our expertise, and that's what we want to help families do. They don't have to do it all on their own and waste valuable weeks, months of making all kinds of mistakes on the wrong person. And if you want to learn more, it's as simple as going to soaringfamilies.com. We'd like to start a conversation with you.

Zack & Selma:  Thank you, Mike.