The Caregiver as CEO

This transcript of the discussion has been edited for clarity and length.

Mike Sacopulos:

The Peace Corps uses the tagline, the toughest job you'll ever love. No disrespect intended towards the Peace Corps, but I think caregiver to a loved one takes first prize in this category. The stress of taking on the care of a loved one can be overwhelming. My guest today knows this firsthand. On this episode of SoundPractice, we will discuss caregivers and the resources available to them with the national expert. Let's begin. My guest today is Jennifer O'Brien. Jen has years of experience as a healthcare executor. She is author of The Hospice Doctor's Widow: A Journal.

Jen, I'm excited to talk with you. The last time you were on SoundPractice, we were discussing your book, The Hospice Doctor's Widow: A Journal and that book won a lot of awards and certainly great critical praise. So, for our audience that maybe is unfamiliar with the book, they should definitely check that out, and I highly recommend it. But today we're discussing a new project that you have. Can you tell us a little bit about, ”Caregiver as CEO?”

Jennifer O’Brien:

As you may know, much of my 35-year career in healthcare has been spent acting as interim CEOs in very large physician practices and other organizations. We don't always call it a CEO, but rather administrative leadership. And it's usually interim meaning two to four years, depending on what situation the organization is in. And that's just my way, that's what I do. Turn the battleship, get it on the right track and then hire my replacement and move along to the next project.

So those elements of leadership and imparting leadership on physicians has been a big part of my career. Then, purely by accident, I end up shifting gears to this book and this notion of helping family caregivers; helping people to plan and prepare for end of life. So, as I'm deep into that, I meet a young woman, her name is Lucinda Koza, and she has founded a very large organization of millennial and Gen Z family caregivers. This is a very large part of the family caregiver population; we don't tend to think of it that. In caring for her own mother, she realized how lonely it was. So, she put together this network of young caregivers.

At one point Lucinda was posting a message to them, and she said, "Remember, think of yourself as the CEO of the situation." And that really struck me. I couldn't stop thinking about it for a variety of reasons. I saw a lot of correlations between the role of family caregiver and the role of CEO of an organization. But I started to realize that her target population, because they're so young, probably has very little experience being a CEO. So, I wrote to her, and I said, "I think you're onto something. I've actually spent a good deal of my career doing that job, and I would like to explore that topic, family caregiver as CEO."

She encouraged me to do it. And I did. I spent a lot of time on it. It is remarkable, the correlations. I created a five subcategories strategy and planning team and resources, data and analysis, environmental services and facilities, and then finally self-management. And it's really self-management not necessarily self-care. As any CEO or leader will tell you, it's not as simple as self-care when you're a leader, it's a truly a self-management situation.

Anyway, as I was creating these educational posts, I sent a draft to Lucida and her response was, "Wow, this is going to be incredibly helpful." We started it and the reception has been remarkable. I mean, people are loving it, and learning from it and feeling more empowered and feel like they're understood even more. There are many correlations with an organization CEO. One of the things we start with is mission and vision, and mission is what you do. Right? You take care of someone who you provide shelter and nourishment and care for someone.

And then vision is what you're aspiring to, what you're headed toward. And in an organization that can differ from one organization to another. But the interesting thing in family caregiving is that it is pretty much the same vision for every family caregiver. That is, we continue the mission, right, and then at some point we are going to transition ourselves from we want a peaceful and dignified end of life for our care recipient, we ourselves will transition from caregiver to griever and we'd like that to be a smooth transition.

Further down the road, we have our future self, right, that needs to have a mentally and emotionally healthy, retrospective, and prospective to be able to go on. Well, it's important for every family caregiver, but I think a lot about for those younger family caregivers. I mean, I was 49 when my late husband became ill, and I spent almost two years taking care of him. And then another couple of years in acute ... Well, not acute, but another period of time in profound grief to have had to do that in my twenties, even my early thirties, before my career even really got off the ground, would've been incredibly challenging.

I think it's been one thing that I just feel like I'm helping some younger folks understand things a little bit better and look out to their future selves, that this doesn't go on forever, it may go on a long time, and it is very, very hard work. I use a lot of quotes in these posts, and one of them is my own, and it says, "CEO is a difficult and weighty position, and family caregiver is a more difficult and more weighty." It just is. Anyway, that's been the launch. The next section we get to is team and resources. And I'm really excited about that one as well.

Sacopulos:

Well, there's certainly a lot of people out there that could use your assistance. The numbers are shockingly large of uncompensated caregivers in the US. Can you tell us a little bit?

O’Brien:

Every five years, the AARP and the National Alliance for Caregiving conducts a survey. And the most recent one came out in May of 2020. The survey results showed 53 million family or uncompensated caregivers, and this is defined as people who took care of an adult spent time helping them with just basic daily needs, helping them get to appointments, sometime in the last 12 months. This is not people taking care of children. Right? So, this is just caregivers of adults. And the number is 53 million, and that was up 9 million from the five years prior.

And remember that report came out in May 2020, which means that was basically pre-pandemic data. So, we have to imagine that number pretty much blew up, got much larger as soon as the pandemic started. And we have some other reports that show that indeed the number has increased since the pandemic started, and that the intensity of the caregiving has grown, because it's a completely different ball game when you can't go to the grocery store for someone.

Sacopulos:

There are also some large numbers is to time involved for taking care of a family member. And I'm interested not only as to if you could put hours of week or day on it, but also your thoughts on how medicine has lengthened the process of caregiving. I think that in some way, improvement in medicine has lengthened people's lives, and you tell me, but it seems to me that caregiving 50 or 60 years ago might have been shorter duration than caregiving today.

O’Brien:

Oh, absolutely. I think he's an intensivist in Australia named Peter Saul, a physician who says increasing longevity means more old age, not more youth. And I think that's something that we forget, that live longer live longer, but live longer is not going back to our 25-year-old bodies and playing a couple of tennis matches in an afternoon.

I think that the duration has gotten longer. I think there's a really neat Facebook group called Slow Medicine, which helps folks look at being a little bit more deliberate about choices at age 82, whether they really want to have that hernia surgery that really may not be entirely necessary and could send things cells for the person and end up things not going so well. So yes, with this increased longevity, I think comes some responsibility for being just very deliberate about how we want to live and how we want to prepare and must prepare for end of life.

But you're right, and when you bring up the amount of time spent that same AARPNAC report showed that if you lived with your care recipient, you were spending on average 37.4 hours a week caregiving. So, if you live with your care recipient, if you have a husband who is unwell, or a mother or father who lives with you and you have a job, right, you go out to work every morning, you do a second full-time job each week taking care of your person. And again, I have to imagine that those hours, those numbers only went up when the pandemic started. Right? Because things just became that much more intense in terms of taking care of someone in a different environment where you couldn't just run to the doctor or couldn't just run to the ER.

So yeah. And if you don't live with your care recipient, I believe you're spending over 15, 15 hours a week, which is getting close to a part-time job, because part-time jobs is defined at about 20 hours a week, usually. So, it's intense, intense work. There's no question about it. I try to help physicians understand it, understand what it's like to be a family caregiver by taking them through this model. So, doctors need to close your eyes and go back to PGY-1, whether you're a surgeon or internist, go back to PGY-1 when you had to take in-house calls and you went back to that call room after serving, goodness knows how many, and you finally closed your eyes and sure enough, this instant you did, the beeper went off and you started to think, "Was there a camera in the on-call room that wouldn't let you get a moment to sleep?" And so, you went off.

So, it's that same fatigue and anxiety only, the family caregiver doesn't have four years of medical education, the family caregiver doesn't have upper residents, senior residents to catch errors, the family caregiver is taking care of one patient, and that one patient, they cannot imagine anything happening to. The pressure is that PGY-1, and there's no 80-hour work week, my friends, it is a 24/7, 365. Often you are lying in bed next to your person who needs your care 24/7. So, it is a very intense job. And the family caregiver is frequently called the invisible second patient, there's just no recognition there, everybody's pretty focused on the patient, which is understandable, but nevertheless problematic.

Sacopulos:

It seems that oftentimes caregiving discussions weigh into end-of-life planning and preparation, which is certainly a scary topic for many caregivers. Can you suggest some resources for folks out there?

O’Brien:

Sure. I mean, honestly, this might sound a little self-serving, but it's not, I get that question a lot. I started getting that question a lot when the book came out. "Okay, you keep talking about how we need to prepare, how do we prepare?" And so, I created a free downloadable, you can download it from my website. It's called the At-Peace Tool Kit: A Guide to Being @Peace with End of Life. And you just download it. I'm an old gal, so I recommended printing it out. Some people don't want to print it out, but whatever, it's a three-step process. One is loading your emergency contact information onto your cell phone and making it accessible when the phone is locked, which most people don't even know that feature exists.

And I can tell you while you, the physician might not be in the ER looking at someone's cell phone, a social worker, or a staff member in a case of trauma most definitely is. And when the information's not loaded or they can't get to it because the phone locks, that's another obstacle to care. So that step actually could save your life. The next step that it takes you through is assigning a healthcare proxy and what's involved with that and a backup proxy. Then the third is probably the most robust step in the thing. And that is just a comprehensive checklist of all of the items that go into what I fondly refer to as the death dossier or the croak folder, or however you want to put it.

But it's putting all your stuff in one spot because obviously, we're all going to die, that's a certainty. If it happens via trauma, it is nice to know where that stuff is and to have it. If it happens over the course of an illness, I can tell you as someone who has been through it more than once, the transition from caregiver to the griever, even in the best circumstances, both my mother and my husband and I prepared very thoroughly for that transition for me, your mind still doesn't work right when you finally lose your person. And so, having that stuff all accessible.

And then there is another item in that toolkit, which is a page called conversation starters because I also would frequently get the question, "How do I bring this up to my mother? How do I bring this up to my spouse?" So, it's just a bunch of ideas of, how to start those conversations. And I'll tell you, it's not one conversation, it's a series, it's a series of conversations and it's intimate. It is getting to know somebody so well that you know what they want both in life and death, and it's beautiful, it is a beautiful part of a relationship for sure.

Sacopulos:

The weight is still pretty heavy post-caregiving. Can you talk a little bit about post-caregiving?

O’Brien:

Sure. Most of the time post caregiving equals grieving. I mean, 99 point some percent of the time and perhaps 100% of the time. And so yes, that transition is just so difficult, because grief is huge even with the best of circumstances, grief is huge. And so, when you overlay a lack of preparation, that's just exceptionally sad. I know this because I'm in a couple of widows groups, as you can imagine, there are groups for widows and widowers and both, and I'm in a couple of them, and not a week goes by that someone doesn't join the group and share the fact that their spouse, usually the husband, died without a will. And it is heartbreaking to me because these people, again, largely women have lost this person that they love.

I mean, that is devastating, to begin with. But on top of that, because they did zero preparation and there's no will, they're getting booted off the credit card, they're getting booted off the utilities, anything that was in any property or anything that was involved is going to probate. I mean, these folks are being left with less than nothing. They've already lost the most important person in the world to them. And then just completely devastated. And the thing financially, if not devastated financially in the long term, certainly in the short term. I mean, people are not able ... like I said, they've got to reapply for credit cards and so forth.

I think the thing that upsets me the most about that is it simply doesn't have to be that way. I mean, this is the one thing that happens to all of us. Right? We don't all have babies, we don't all get married, we don't all go to college, but every single one of us at the end of our lives dies. I mean, period. And four out of five of us will do it after an illness, where we'll have that opportunity to transition from caregiver to griever and have a chance to see it coming and to talk about it. So yeah, it's a difficult transition, period. It can be an excruciating transition if there's no preparation.

Sacopulos:

Do you find generational differences in caregivers’ experiences and stresses?

O’Brien:

Oh, that's a great question. I am certain there are just by virtue of what I told you in terms of how I came about the idea for the caregiver as CEO, realizing that these folks don't have some of the life experience yet, that helped me in a caregiver role. And so, that's for certain, they tend ... Again, these are gross generalizations which are always risky, but they tend to look to the device for guidance and support, which honestly, I can tell you, there are beaucoup resources available. Even Bob died, my late husband died five years ago. Even in those five years, there are so many awesome resources available now.

And I think some of them are available because of millennial and gen Z caregivers, who said, "Whoa." I know they are, I've met a couple of millennial and gen Z caregivers who have just, once their grandmother or whoever died, said, "That was crazy. There's got to be a better way." And came up with it. Whether there's a medication dispensary system for the home now called Hero. Seriously, I used to write down ... When Bob got so sick that he wasn't able to manage his medication, I wrote it down, and I set my timer on my phone. This is a system that takes that thought out of it and puts some security into it. Right?

There are just all kinds of resources, and in many cases, credit those younger generations were saying, "There's just got to be a better way." Because there does. There is a better way. Yeah. So yes, I think there are some differences.

Sacopulos:

If people would like to know more about this topic. Certainly, I strongly recommend the book, The Hospice Doctor's Widow. As we wrap up our time together, how else can people learn from you and find out about caregivers as CEO?

O’Brien:

Well, caregiver as CEO is an easy one, just follow me on Instagram. I am @Hospicedoctor'swidow, and in that case, the word doctor is spelled out. I mean, and I'm on LinkedIn too, but because my name is Jennifer O'Brien, which is a super common name, it's harder to find me in other places, but on Instagram, I'm easier to find. So that is the place, and sooner the better, because like I said, it's probably a five, six weeks, once a day post educational program. So, get on board sooner rather than later and take a look at it. I don't know what's going to happen with it. I have been guided that it would probably make another good book or the start of a good book, and I can't say I disagree with that.

So, who knows that may be in the future? And I would also send people to my website because I have again on the resources page, in addition to the @piece toolkit, I have a lot of resources listed, and honestly, there's a contact me page on the website, I have yet to not respond to somebody. As you can imagine this morning, I got a text from someone, happens to be someone who knows my phone number. But when this stuff goes sideways, when mom needs to be admitted to hospice, when stuff happens, people need help and those of us who are not in the throes of it and know some of the resources can at least point people in the right direction.

And following the hashtag #familycaregiver or #familycaregiving is a great way to learn more. Oh, and one other thing, there is a website called Archangel.me. They have a caregiver intensity assessment tool. It's like a Cosmo quiz. Right? You answer a series of questions and then it gives you a score that tells you, "Wow. Yeah, you're in a very intense family caregiver situation, or you're in a moderately intense family”

Back to the caregiver as CEO. Right? CEOs hire consultants and other advisors to give them an objective perspective on something, and that's what a tool like this does. It is either validating, "Hey, you have every reason to be off the chart stressed out." Or it is saying, "Things are pretty cool, and you have a little time to get some stuff together because they're probably not going to stay smooth and cool forever.”

Sacopulos:

Tremendous resources and great thoughts. Jennifer O'Brien, thank you so much for being on SoundPractice.

My thanks to Jennifer O'Brien for her time and insights, her book, The Hospice Doctor's Widow is award-winning. I highly recommend it to you.

Listen

https://www.hospicedrswidow.com/resources

Free and downloadable tool kit – At-Peace Tool Kit: A Guide to Being @Peace with the End-of-Life.

@DrsWidow