Todd “TJ” Keitz 3/11/25

(This interview has been edited and condensed for length)

Zack:  Todd, thank you so much for being here with us today. We really appreciate it. You have an incredible caregiver journey with many family members. So please, if you could tell us about your journey, and also share how that impacted trying to hold a job at the same time.

Todd:  It's nice to be here, Zack and Selma. Thank you so much for having me… I never looked at my journey where it started until I started getting involved in the MyCareFriends stuff, which we'll talk about… But upon further reflection, I realized it really started when I was a kid.

When I was eight, nine, 10 years old, I had an uncle who came to live with us for a year. He had colitis, and he… had a colostomy. And so as a little kid, I was one of those who was helping change the bag and so forth. So that's really where it started…  And then later on, it was my sister who was in a very serious car accident, who was in a coma for a couple weeks. We didn't know if she was going to live. I was living in Boston at the time. My parents were in the Philadelphia area. My sister had the accident in DC… I ended up going down there and being the caregiver advocate, talking with nurses, physicians, everybody, insurance companies. And so that went on for years. In fact, that had me move back to Philadelphia. I chose to move back to help with her recovery…. And then after that, my grandparents toward the end of their lives… helping my mom out who was very involved with them.

Then fast forward… 15 years later after my last grandparent died, then my mom got sick. I was living in California, came for a visit here in Florida… within three weeks, her hemoglobin went from 12 to five. She wasn't going to live perhaps another 24 hours. This was my first vivid memory of advocacy… we were in a local community hospital, and she needed a transfusion. She wasn't going to make it…. they're telling us “You come back in two days”…  I said, “How do we get her care right now? How do we get the transfusion?”…

She said, “You have to go out and go down the corridor and go to the emergency room. I took my mom, got her in. She had it [the transfusion]… It just wasn't the level of care she needed at that point… A day or two later …  I said to the nurse manager, “I'm taking my mom out of here…  I know what the patient's bill of rights says, and I know I can do that… I'll spend what it takes”…

It took them ten days to diagnose her with systemic scleroderma. Then they could prescribe a course of action and treatment. She ended up on dialysis, fortunately, for only three months. She was hospitalized 17 times in the next 22 months. That was an unreal surreal journey. The 17th was the first month into COVID… that was a crazy experience. Then my dad was diagnosed three months later with bladder cancer. High grade bladder cancer, no less. So, he had surgeries… chemo, radiation, and it metastasized. His prognosis was a year at best…  Miraculously, two and a half, almost three years later, he's been clear. So, that's a nutshell of the journey. I know that was a long answer.

Selma: One of the things that your story really emphasizes is how critical patient advocacy is. But with all of that going on, how did you manage to keep your job?  How did you manage to be a working caregiver and do all the advocacy and caregiving for your family?

Todd: Great question. I'd say I was in somewhat of a fortunate situation, I was self-employed… But I had clients, so I couldn't keep most of them. For the most part, for three and a half, four years, I was a 24/7 caregiver, especially when I had two parents who were seriously ill. During COVID, we had one at one end of the house, one at the other end of the house, and I'm in the front of the house. I had to keep them separate because they're both immunocompromised.  I had to do the cooking, cleaning, you name it, everything. But in terms of a job, that was my job.  That's what I did.

Zack:  I want your reaction to this, Todd. I did a recent post on LinkedIn about putting in your profile that you're a caregiver. That is a skill set that organizations can't train. It's got to be someone who has that kind of experience. As I was listening to you talk about bill of rights and standing up to health care providers, that is a tremendous amount of skill-set that organizations want. What's your gut reaction to putting that on your LinkedIn profile and listing some of these skill-sets, especially advocacy?

Todd:  I'm 100% behind that. I believe in that with all my heart… the first program that MyCareFriends did, and this was a month after we launched as an online platform for caregivers and advocates, we were asked to do a webinar for a regional law firm on the East Coast… And we did this webinar, and it was a lot on this topic. It's about being employed caregivers, how can employers support caregivers better, and what is it about the caregiver job? There are so many transferable skills. One can argue, even better than a lot of other candidates… what you've got to do, what you've got to juggle, and the intensity and the stress you're operating under and dealing with.  

Zack:  I wanted to follow-up to your journey. I know you're self-employed, but even that's difficult. So how did you manage your own absenteeism, your own presenteeism? Like when you were dealing with the hospital and going back to Philadelphia for your sister, there were still things that were on your mind. How did you compartmentalize all that?

Todd:  There are two different scenarios, my sister versus my parents, and not necessarily because of who they are, more from a time in my life of when they happened. So my sister's accident… I was relatively young. And in my career, I was really very fortunate. I had a boss who was unbelievably supportive at the time because I was still working for a corporation at that point in time. And he said, “Look, your family comes first. You got to do what you do. We'll do our best.  I'll do my best to cover for you…  Do whatever you can from afar. I was going down to DC every weekend. It was more like for four days at a time. For the first two weeks, I was there nonstop, but then I kept going back…. That was a time when I had a supportive boss and a supportive company, and it was a Fortune 500 company. And it was a health care company…. I don't know if we can differentiate between, but they certainly understood in a different way, in a different level. Fast forward twenty five, thirty years to when my parents, when this all happened, it was different. I was self-employed and had been for many years.  So I just had to do my best, and as I mentioned, there was very little time to do any work whatsoever… So the things that you deal with during that, more so than when my sister, because I was employed and getting a paycheck and had benefits and so forth… And then at a later point in life too, you're just you know, what is your role in life?...  you're looking at your responsibilities. What's your self image? What's your self worth? How do you juggle this? And when will this end?  I mean, how will this end? And what's going to happen at that point? And… how do I take care of myself during all that?... there was literally so little time. I'd get out for a walk maybe at ten at night for half an hour… I ended up creating [my] blog when I first had a little bit of time to write to share the experience… When people during those four years, let's say, when they would say, how's it going? My answer to them all the time was one day, one week. One day, one week. And that's what I named the blog.

Selma:  When you look back at nine, 10- year-old Todd, the experience that you had helping your mom take care of your uncle, do you think that helped shape your willingness to be a caregiver?

Todd:  That's a great question. It's, I think, a multipart answer. One being, I believe part of it was just innate in me just to care. I care about people. But I think a big part of it certainly was the experience and that I saw him getting better…  He was able to move out of our house and live on his own. So I felt some pride in whatever I was doing… But just as important was that I had great role models. My mom… was an amazing caregiver herself to my uncle (her brother), to family ongoing, to my grandparents when they were sick, so I got to see how she was caring for her parents. And then I was able to kind of put that into steroid mode with me…  I say that because I had a lot more background in the health care world than my mom did.

Zack:  So, I'm going to ask you a direct question. Do you think there's a difference between a male caregiver and a female caregiver? Pros? Cons?

Todd: … I think this is part of a bigger discussion that we could have… I really believe we need to just chill out and step back and look at… there's commonality, and we all care about our loved ones… And in whatever way… we want the best for them. And if we can just reach across and everybody, male, female, whatever political bent you have, and just realize, let's get back toward the middle…. because that's where we all thrive. That's where we can all benefit, and we can raise each other up. It's not going to happen when we're at extremes.

Selma:  Could you share with us what MyCareFRIENDS is about and what you do?

Todd:  Sure. MyCareFRIENDS was developed on the side of a desk to start. I went to a friend of mine… and said, “Hey, can you help me develop an online community for caregivers and advocates to connect,… share, support each other a la Facebook, but more specific to caregiving and advocacy?” And MyCareFriends was launched with 70 groups that anybody, I mean, caregivers, advocates… anybody, can join for free… You join groups. You communicate with each other. You post questions. You can post information and so forth, to be helpful… There's a mindfulness section. There's news. There are events that we pull, not our events… They're online events so that anybody anywhere can sign up. And for the most part, they're free events that we put up there because we know caregivers, most of them don't have money to spend.

So that's a big part of it. And then it quickly, morphed also into programming. Last year, we did programming on caregiving youth. We did a program on autoimmune diseases in women, which is really exciting, and that continues to go. We're getting close to launching, a dementia program based on a yet to be launched film, which is really exciting. Then we have another program which we're going to be doing. It's called XR in health, which is virtual reality, augmented reality in health because there's so many avenues and ways that it is utilized…

Zack:  Just to take, MyCareFriends a step further, knowing that there's working caregivers reading this, employers, how can somebody, learn more about it and join?  And what would you recommend to an employee right now if, let's say, they're struggling at work? How can MyCareFriends help out with something like that?

Todd:  Well, MyCareFriends, as I mentioned, is a free community. They can go to mycarefriends.com and sign up, and then just go and explore. Join groups, communicate with each other as caregivers. For employers, it's something you can let your employees know about…

Zack:  If I were a manager and I listened to or read this interview, draw a picture of the perfect person on my team who would benefit from MyCareFriends?

Todd:  … This is something where an employer can say, hey, did you know about this resource? Perhaps this can help you… You can learn from people on this site. Go to them. If that individual in middle management has somebody who's a family member who has dementia, go join the dementia group. Post comments. Look at all the other comments that have come up. You can make friends, hence, the mycarefriends.

Zack and Selma: Thank you so much.