Q&A with Real Working Caregivers:  Suzanne Blankenship 9/9/24

(This interview has been edited and condensed for length)

Selma:  So, maybe the place to start is you talk a little bit about when you realized that you were a working caregiver. When did you realize during this whole process that you were a working caregiver?

Suzanne:  Well, I was working, for a corporation based in Albuquerque, and my mother was in Dallas.  And she had just been diagnosed, with breast cancer … they wanted to do some surgery. And I have a brother … he lives in Dallas and … my brother is wonderful…. We've made a good care team. But early on … my mom reached out to me and said, “Will you come for the surgery?” And I realized it's not just … you go in for a doctor's appointment and you come out…. My mom can't really just take herself home from this. I need to stay a few days and make sure she's okay. And then the follow-ups of going to the oncologist…. All of those kind of things.  I helped her with questions to ask and it was really funny, later on in my caregiving journey, I would make a list of what my mother needed to ask at the doctor's office.

And I would send it in an email to my brother because he was the one that would take her…. I don't think there was one time that he didn't text me from the doctor's office saying, “What was that list again?”

So that was the start of it, and then mom had a really great period of time without a lot of medical issues. And then after I'd started my own consulting group, then she sort of started needing a little bit of help in terms of figuring out Medicare and navigating some of the insurance questions and things like that, and that I could do from afar.

But the big one was when she needed… a pacemaker. And so I went down … I had to stay and be with her until after she went home and she was so confused and I was busy telling my brother she's confused and he was like, “Okay. Well, I'll go over and check on her.” I'm like “No. You don't understand. She's picking up the telephone and thinking it's the radio remote. She is totally and completely out of it.” And that is really when I realized the light bulb went on. This is not an occasional help. This is something that is going to be ongoing. And so that really jump started the full out journey.

Zack:  So, couple questions, during that time ... did you tell anybody at work that you're doing all this? And if you did, why? Or if you didn't, why?

Suzanne:  Zack, that was a long time ago, and I've slept since then! But I did tell them. I had, at that point, a very understanding manager. And I was working such an intense job and traveling 85% of the time that I think the understanding was there that I basically had earned that initial, going in, helping mom for a couple of weeks or whatever…. I have been in a situation where I did not tell them because I didn't want them to feel like I was taking advantage of my, you know, you guys know this. You take what you can get and then you improvise for the rest.

Zack:  My follow-up question to that is, what would you say had the biggest negative impact on you, in terms of leaving work? I'll give myself as an example. When I was running my business, I ran a home care business for 13 years. And my brother always just assumed I could leave and go anytime I wanted to because I’m Zack. But when I would leave for four days or five days and be in North Carolina and come back, I was hit financially. I was hit physically, very exhausted mentally because now I'm worried even more from what I've seen. And emotionally, forget about it. What would you say impacted you the most in that part of your caregiver journey?

Suzanne:  I would say the part that drained me the most was all of the ancillary phone calls and follow-ups that take a little bit of time, but really a little bit of time you don't have.  So, when you're on the phone with Medicare, you don't just pick up the phone and say, oh, I have a quick question. You're on the phone with Medicare for an hour before you get to somebody.

Or, like, with my mom, it was the VA…. I can just tell you about being on vacation and standing in the middle of a stream in New Hampshire, trying to talk to the VA when they decided they could finally call me. You know, to get the Aid and Attendance monies for my mom….

And so, to me it was what you think you're going do by going to a doctor's appointment or a surgery or something. You say, well, that's going be an hour. That's going be two hours. You don't think about all of the other ancillary requirements and that's what takes up so much time. You have to stop what you're doing or you have to leave a conference call or not take a meeting or whatever to get on the phone … because when the doctor calls, you answer. Because you're not going get them again.

Selma:  Well, in the article, you made the statement, that you're a perfectionist, which totally resonated with me so well. And then talking about your caregiver experience, you said “perfection is impossible,” which also resonated with me. It's such a powerful statement. Can you talk a little more about that?

Suzanne:  Selma, … I did a talk, this Spring and I ended by explaining to my audience that this is a marathon and not a sprint.  And that while you want to do every last thing possible for your loved one, you cannot. Perfection is impossible because, it's like when we have to learn with our kids that we can't stop their hurt. We can't always be there. We have to help walk them through whatever it is that they're facing rather than prevent what they're facing. And I think that's the hard part about our parents or our loved ones that we're caring for is that we want the perfect answer.

We want to find the perfect place for them to live. Or we want to find the perfect answer in one doctor, not twelve….You can't have one doctor saying, this way it's going to  be, and the other doctor say, this way it's going to be. You've got to come in the middle. You've got to somehow find the non-perfect, perfect answer.

And that's what we do all day long as caregivers, is we find the non-perfect, perfect answer….

But you just have to learn that you make a plan, and the plan is going change. But having had the plan, you're closer to perfection than if you never had a plan at all.

Zack:  We always go to people and say, what would you tell your high school self to get ready for college? What would you tell your pre-caregiver self to get ready for your caregiver journey? What would be some pieces of advice?

Suzanne: One of the things that I think I would tell myself is that this is not a lone soldier job. Find a team and build them…. I don't run relays. I run the race myself.  If I see it needs to be done, everybody get out of the way, I'm going do it. And it's not that way when you're caregiving…. Especially if you're working or you're in the sandwich generation or I mean, or you don't live nearby or whatever it is, you cannot do this alone. So, what I would tell myself is, don't be critical of yourself for understanding that it's not a lone soldier job. Build a team. Build an effective team. When the team members are no longer needed and are no longer working, get rid of them and move on. Find somebody else.

The other thing I would tell myself … we have support for every other part of our lives. My daughter, we just dropped her off for her freshman year. There's a Facebook group for dorm room mamas. When you get married, there's Bride Magazine. When you have your kids, there's what to expect when you're expecting. There's the first-year toddler to toddlerhood. When they start driving, there's all these people that show up to tell you, oh, get this, do this, whatever. …When it comes to caregiving, you never have that support. And I would tell myself that … when you get to that point, you have to be an investigative reporter, so to speak, and go out and find what resources you need, what information is going be pertinent to your situation. You learn a lot by Googling Medicare.gov.

I mean, all those things that you don't ever expect in life. Every other part of our lives has help, support, a book, or something, and you don't get it when you start caregiving. So that I would tell myself, don't expect that like you will see in all the rest of your life.

Selma:  And this is a great segue into my question which is, your book is such a comprehensive and detailed resource and tool for someone who's standing on that red dot on the map and trying to figure out, which direction should I go? How did you land on using humor to talk about such a difficult journey?

Suzanne:  Well, thank you, Selma. I appreciate that. I would say mostly that would be my mother. Our family deals with a lot of hard things through humor…. And when I started to write the book, I thought about mom and I driving along this little country road … And we would go through all these little towns. And one time we looked over at this lady who was walking along with a walker on a sidewalk up to where we were stopped at the stoplight. And this lady was just slowly going along with her walker on the sidewalk. And my mom looks over at the lady and she says, “If I ever get to that point, I want you to just shoot me.” And we laughed and okay, mom. That's not a problem.

So, one time when it got really hard with my mom, she was sitting in her chair, and I was sitting on the floor sort of reaching up, holding her hand. And it was a particularly challenging time. And she looked at me and she said, “I'm sorry.” And I said, “You know, mom, I wish I could, but I just can't shoot you.” And we laughed, and it just defused the moment. And that's what we did.

I've still got a little note up here in my office from my mom that she would send bills and things I needed to do. There's a little note up here that says, “Sorry. More work. Love mom.”  And so I just felt, Selma, that it's such a hard journey. It's filled with emotion. It's filled with the sense of, if I don't do this right, I'm letting these people down. It fills your nights when you can't sleep. You think about, oh, I coulda done this or I should be doing that or I failed at this or I coulda done this better. And the only way that I see to get through that is twofold: one is to be organized, and two is to laugh. And that's why I wrote the book the way I did, because otherwise, you just sit around and ball all day.

Zack:  Some of our readers are going to be HR people. They're going be managers. They're going be C-suite. They're going be employers. What's one piece of advice you would give a person who's never gone through what you've gone through … so that they could be more empathetic, more compassionate, more supportive of employees?

Suzanne:  What I would say to anybody in the C-suite or HR or anyone in charge of making policy for employees is that … you want them to be successful. And the way you want them to be successful is to provide them with tools. Whether that's the ability to use a computer or have an office or travel to meetings or whatever it is, you want them to be successful…. And I would say that whether, or not you have ever been down this road, in order for your employee to be successful, you need to give them the tools that they need to get through this part of their lives. And without that tool, your company is going be hit on the bottom line just like if you didn't provide them with their other tools. And it is not inconsequential…. There are four out of five people that are currently employed have been a caregiver at some point in their lives. Or are currently a caregiver.

It's just not something that is the occasional situation. And so, building into your plan, your program for employee support, build in this. Build in a way to help them walk this part of their journey successfully and minimize their need to take time off or to be present… So that's what I would just say is, you know, it's a tool. You're going to be providing them with tools no matter what. This is one. You can't forget it.

Zack:  Is there a question that comes to mind that you wouldn't mind being asked if you were an employee, as to try to get a little bit deeper into what your needs might be?  What are some of those tools that maybe a company could use?

Suzanne:  One of the things that I've thought of often is if there were … brown bag lunches and things like that says, you want to find out a little bit more about retirement, come in and come to our brown bag lunch …. I believe companies should provide the support and then let people self-identify by attending or provide the information in a newsletter or a podcast … these are some of the benefits that our employees receive. Something that allows people to self-identify and seek a resource that they might not know is there…. I don't know of a question that a manager could ask, but I believe that it's important to provide things, resources, information, in a variety of vehicles where they can self-identify.  

Zack and Selma:  That was fantastic! Thank you.