Like many of you I was a caregiver for my father at the end of his life. What started as minor indignities of age had progressed into obstacles to life. Years later I remember the emotional cocktail of sadness, fear, and exhaustion that caregiving came to be. I needed a guide.
This transcript has been edited for clarity and length.
Mike Sacopulos: My guest today is Jennifer O’Brien. She’s a healthcare expert and author. Ms. O’Brien’s first book was the award-winning The Hospice Doctor’s Widow. Her newest book is Care Boss: Leadership Strategies and Resources for Family Caregivers. Jennifer O’Brien, welcome to SoundPractice.
Jennifer O’Brien: Thank you. It’s a pleasure to be here with you, Mike.
Sacopulos: Let’s set the stage for our audience. How many of our fellow Americans are caregivers for a family member, and is this a growing demographic?
O’Brien: Right now, the number we have is 53 million. That’s 53 million Americans taking care of an adult, somebody 18 years or older. And by “care” we mean anything from helping with doctor’s appointments or paying bills to full-on in the same household taking care of someone who is nearing the end of life. So it’s a really broad range.
That 53 million number is from the AARP and the National Alliance for Caregiving (NAC), but that figure is five years old. They do a report every five years. The next one is coming out soon... they’ve delayed it a couple times. They say the end of July now is when it’ll come out, and there is every indication that that number will shoot up. So we know it is at least 53 million.
Sacopulos: I assume that number tracks demographically with our population. As we have an aging population in the country, we would expect that more people need caregiving.
O’Brien: Absolutely, yes. These are adults that need care for one reason or another, and most often it’s that they’re aging or ill or both.
Sacopulos: You somewhat anticipated my next question, but it occurs to me that caregiving is a broad category. Some might consider giving a ride to an elderly relative to church on Sundays as caregiving, where others would have a more active definition in mind. For purposes of your book, what are your parameters for caregiving?
O’Brien: In the introduction of my book, I use the AARP/NAC definition or question, which is “at any time in the last 12 months, has anyone in your household provided unpaid care to a relative or friend 18 years or older to help them care for themselves?” They go on to specify, this could be just about anything and this person need not live with you. And as you heard in the question, it’s relative or friend. You don’t need to be blood related to be considered what everyone refers to as a “family caregiver.” Family is a nicer way of saying uncompensated, so we use the term “family” instead.
Sacopulos: I think we all probably have people in our life that we consider family that would not meet maybe a strict legal definition of it, but we would consider them family.
O’Brien: Absolutely. Yes.
Sacopulos: Let’s take a step back. Why did you write the book?
O’Brien: My late husband was a hospice and palliative care physician. While I was caring for him, I kept an art journal, which I later allowed to be published as a book. It came out about five years ago, and that launched me into the middle of the caregiving advocacy, end of life, and grief space quickly.
As a result, I discovered a young woman named Lucinda Koza, who at the time (she is no longer doing this) was caring for her father. She had amassed a following of about 100,000 family caregivers who were millennial and Gen Z. A significant percentage of the family caregiver population are young, young folks who are doing this very difficult work and sometimes putting their careers on hold to do it. She had this huge following, and one day she posted on Instagram, “Remember, you are the CEO of the situation.” Now, Mike, I had now done the very intense family caregiving for my mother, who died of pancreatic cancer; my husband, who died of renal clear cell carcinoma; and my father, who died of congestive heart failure and lung disease. And I thought to myself, wow, that’s so true.
I’ve been a CEO. I have acted as interim CEO for several large healthcare practices over the course of my career. That’s kind of my niche. And I thought, wow, she is spot on with this, you are the CEO of the situation. However, most family caregivers have not been a CEO. I thought, it’s totally true, but I can help fill in some of those blanks for people as to what does it mean to be the CEO of the situation.
I’m fortunate also in that I’ve done this interim CEO-ing in the healthcare setting, which is such a big part of family caregiving. I started to think about it and I started writing this book trying to say, here’s everything I know about leadership as it relates to family caregiving and just giving family caregivers everything I could to help them see it as the leadership position that it is.
It really is a leadership position. And, as someone who has been in some decent-sized leadership positions, I would contend that it is a more significant leadership position than the CEO of a Fortune 500 company, because we’re taking care of our person, and this person means more than the world to us. It’s big. It’s really, really big.
Seeing it through that leadership lens only helps us to... I mean, the heart is already there. What we need is some of the strategies and the resources and the perspective of a leader to be able to help our person in the best possible way and to ultimately achieve mission and vision.
Sacopulos: Well said. I occasionally help clients with creating wills or estate planning documents. I find very few of the folks that I work with anticipate future caregiving for themselves or for loved ones, even though we just talked about the enormous percentage of folks that have dealt with this or are dealing with it. Why is it, and what do you recommend people do to prepare for future caregiving needs of family members?
O’Brien: Well, first of all, I recommend that you start early before anybody gets sick. That’s certainly what my husband and I did, and to some degree, my mom and my dad did it as well, talking about what you want and you don’t want as you get older and needing more and more assistance. I think that it’s important to at a certain age, whether that’s when the kids move out or what, you start looking at your domicile and envisioning it as a facility such that you see it in terms of aging and physical limitations.
Bob and I moved into a condo when he got sick because he knew I wouldn’t do well in the house, and the shower had an enormous six inch by six inch by six inch curb. Getting him in and out when he got really sick was pretty darn difficult. I recommend looking at things like that, looking at where you’re living, where you will be living, where your parents are living, where they will be living, and start on that stuff sooner rather than later and have those conversations and do the work because it is so difficult.
Eighty percent of us will die of illness or old age. Only 20% of us will die suddenly. It’s easy to sort of brush things off with “I might get hit by a bus tomorrow.” It’s easy to throw that out there as a reason not to worry about the three steps up into the house and the fact that your mom might not be able to negotiate those very soon. But that’s no answer, and especially your listeners, of all people, right?
Physician leaders, we know this. We know this in our work. We know this in our lives, and it’s time to go ahead and apply it to our own families — and if I may go so far as to say, create an environment where our employees are starting to think about it and being able to discuss it in their own families.
Sacopulos: Do the needs of a caregiver vary depending upon whom they’re providing care to? For example, do caregivers for a child or a spouse have different needs than caregivers for elderly parents, for example? I’m not talking about the person that they’re caring for. I’m talking about themselves, their needs. Does it vary depending upon their interaction with whom they’re providing care?
O’Brien: Wow, that is a good question, Mike, and I haven’t had that question. Of course, all I have to draw on to answer this question is my own experience, because I don’t know of any research on the topic. I have to say yes and no. Certainly when my husband was dying, that was very different. The emotions involved were very, very different from when my mother was dying and my father was dying.
I think the needs of the family caregiver period are overlooked in general. We talk about the isolation that someone feels when they get a cancer diagnosis, for example. Well, I can tell you firsthand that people check in. Not many, lots of people disappear, but people check in on your loved one who has cancer. Because guess what? They’re probably going to die of that cancer, and you’re going to feel better if you checked in with him before he died. But people rarely think to check in with the family caregiver who is going through something similar, but different. Isolation is similar, but I’m going to go on after he dies, and I’m going to live with how I handled the end of his life. I’m going to live without him, all sorts of things. Yet the family caregiver frequently gets forgotten in that situation.
Sacopulos: I think that’s a great point. And as to your comment about saying “it depends,” that’s the vast majority of the practice of law. So I think it’s a perfectly good answer to the question.
O’Brien: Thank you.
Sacopulos: As you know, we have an audience of physician leaders, executives, and those in management positions. I’m interested in your thoughts on the medical community. But I’m wondering if there is maybe not enough attention on the needs of the caregiver, him or herself, by the medical community. Because certainly it takes a toll, does it not?
O’Brien: Right. No, I think... Okay, so there’s several ways to look at this and talk about it. I think it is a big, big missed opportunity that our nurses and physicians and allied health and all of the professional caregivers miss what an incredible asset the family caregiver is. They focus too much... I mean, not too much. Of course, you can’t focus too much on a patient, but you need to also focus on that family caregiver.
For instance, I went to every visit with Bob, every doctor’s visit, every infusion. And if you have someone like that in the room, making eye contact with them, finding out who they are, they are in essence a physician extender that you have not tapped into. Because if you’re concerned about sudden weight loss or gain, you’re listing out some things from this new medication that this patient needs to be aware of and be on the lookout for.
I would say you need to pull that caregiver into that same goal setting because, A, two sets of ears are better than one in terms of these difficult patient encounters. And B, I’m the one who’s going to go out and buy the scale. I’m the one who’s going to make that happen so that he does weigh himself every day. So yes, I think professional caregivers are missing this completely.
I think there’s a great opportunity to involve the family caregiver. I also think that there are times when it would not be a bad idea to take the family caregiver aside privately. I can tell you there were many, many nights when Bob Lemberg, my late husband, who was one of the toughest cookies I know, would be sobbing in the fetal position for the better part of the night, and all I could do was soothe him.
Then he’d have a 10 AM oncology appointment, and that man would shower and put on a tie and a jacket and walk into that appointment as though he owned the place and talk with his oncologist. Everything was grand. And I am sitting here going, are you kidding me? It’s not grand. I think it would really help professional caregivers occasionally to make eye contact and do even a private check with the family caregiver.
When the professional caregiver shows respect and the understanding of the role of the family caregiver, I think then the patient realizes we’re a team here. We’re all working toward the same thing. I think that can help the care in general tremendously.
Sacopulos: Well said. As you researched and put together your book Care Boss, were you surprised by any facts or circumstances that came up during the process of creating the book?
O’Brien: Yes and no. At the front of the book, I talk about what leadership is and what caregiving is. There were a couple of Harvard Business Review studies that were published about leadership. In one of them, I think over 50% of CEOs admitted that they felt lonely and isolated in their job as a CEO. And of those 50%, 61% felt that had an adverse impact on their job.
Yet another Harvard Business Review study showed that 68% of CEOs feel ill-prepared for their leadership work. As a CEO, I felt both of those things, I have felt terribly isolated. You’re not the board and you’re not the staff. You’re at the most narrow part of the hourglass. You can work closely with your staff and you can be the best possible team, but at the end of the day, you’re the boss.
And if anybody has to be let go, you’re going to have to let them go. You’re not friends. That is, you are friends, but you’re not that kind of friends. So it’s a super lonely position. I certainly felt that. I do a lot of interim leadership, so I’m going in not knowing a lot, not knowing the people really very well and that sort of thing. I would feel ill-prepared, but I was a little surprised to learn that that many CEOs also admitted to feeling ill-prepared. This is very similar to caregiving. We feel isolated as caregivers and we feel ill-prepared.
Sacopulos: It seems to me that caregivers would feel these things even in a greater way of being ill-prepared, because unlike a CEO in a commercial setting, who has trained for years for that position, we don’t really train for caregiving, do we? It would seem to me that you could feel all the more ill-prepared in that...
O’Brien: Yes. Right. No, I would say it is definitely greater for family caregivers in terms of that feeling. But I was surprised that leaders feel that way.
Sacopulos: Absolutely. Does caregiving often negatively impact the relationship of the caregiver and the person who is receiving care? And if so, what can be done about that?
O’Brien: Yes, it can, certainly. I think it can. I think there’s always a caregiver... It’s sort of like a “we always hurt the ones we love” kind of thing. There were certainly times in all of my caregiving relationships when the person I was caring for lashed out, said something ugly to me maybe more than once, and that could have really damaged the relationship. Certainly the more that that happens, the harder it is.
In terms of what you can do about it, to some degree, you have to take that objectivity of leadership that I suggest in the book. You have to get your attitude up and see the bigger picture here and recognize the person feels terrible physically. They are losing control of their lives. They’re not able to do things they used to be able to do, and so they’re lashing out.
And remember the “golden rule” type stuff — that you’d probably be feeling the same way and perhaps lashing out also. Looking at it through the leadership lens I think really, really helps. You can’t fire the person, but you can certainly get that vision and you can get that perspective up in order to remove yourself from too much negative emotion and difficulty.
Sacopulos: Your book Care Boss is subtitled Leadership Strategies and Resources for Family Caregivers. We’ve talked about the leadership aspect. Can you give our audience a preview of the resources your book covers?
O’Brien: Sure. Well, there are several sections to the book. There’s Strategy in Planning, and in that we look at lots of planning. Everything from having a “go bag” ready with the phone cord and the reading glasses and the teeth or whatever it is that needs to be in the go bag and taking that to even the random outpatient visits, because so often as someone gets sicker, those outpatient visits can turn into an admission, to keeping a comprehensive medical record of your own, because so many systems do not have medical record systems that speak to each other, to doing a comprehensive end of life plan with the person you’re caring for.
There are several other resources in that section that I think are hugely practical and helpful. Then there’s the next section, Team and Resources, which helps you look at. . .lots of caregivers say, “I’m a team of one,” or roll their eyes when they hear the word “team.” It’s true. It’s very, very lonely. And there truly may be cases where there is only one uncompensated care person, caregiver, but you do have professional caregivers.
There are a team of doctors and nurses involved and other professionals, and that section helps the caregiver realize who those human resources really are and how to turn “let me know if I can do anything to help” into actual help, how to see the family as more of a group that some can help and some can’t, how to delegate, et cetera.
The next section is Data and Analysis. There’s some very specific information. First of all, the notion of this objective work, dollars and cents, time, weight, and so on. These objective measurements actually can be quite helpful in what is normally a very emotional job, but having some objectivity and very specific ways or resources in that section about, let me see, setting up kind of... I’m sorry, about analyzing incidents.
There’s a really great four quadrant method that was initiated by President Eisenhower in that section about how to look at components of a situation. He famously said, “I have two types of problems, urgent and important.” And from that, he developed this grid of urgency and importance, and it takes you through that grid and how to look at tasks. Really very few situations are both urgent and important in caregiving. If someone’s having shortness of breath, that is both urgent and important. If someone fell, that is both urgent and important. But other things can feel urgent, but they aren’t really urgent.
Getting the end-of-life plan together, that’s important, that’s not urgent. We need to work on it steadily, but it’s not in this moment absolutely urgent. A sale on supplies that you really like, a particular type of supply that you really like, or a treat, your favorite bubble tea or whatever it is, and there’s a sale, that might be important to you, but you could delegate it out.
It’s got an urgency to it, but it’s not necessarily super-duper important. So you can delegate it out to somebody else. Hey, can you stop by Don’s Pharmacy and pick up these things? Or could you run by and get me my favorite drink at the coffee shop? Or whatever it is. Then there are those things that somehow get built up as both urgent and important and are really neither.
That is just someone else’s poor planning or procrastination or whatever it is. Those things, we just need to recognize them for what they are and discard them. I think that’s a really, really useful tool that’s in the data and analysis section.
There’s another one, a root cause analysis method, that I think really is easy to use — that’s why I put it in the book — and it’s called the Five Whys. You have a suboptimal outcome of some sort, and you ask the question, why did I run the stop sign when I was taking my person to the doctor’s appointment so that I ended up being late to the doctor’s appointment because I got stopped by a cop? Then you ask the question, why was I late to the doctor’s appointment? Well, I got stopped by a cop. Why did you get stopped by a cop? Because I was in a hurry. You just keep asking why about five times, four, sometimes six other times. But about five times, if you ask that question, you will get down to a root cause. I didn’t check to see what the roads were going to be like or what the weather was going to be like this morning when I planned what time we were going to leave — that kind of thing. You can often find something to add to your way of doing things that will prevent those problems in the future.
I like that method a lot because it’s easy to use and it really does render some results. And then the next section is about seeing the home, and I say home, depending on it could be your home that the person is staying, it could be their home, but seeing the home as the facility. Your listeners understand in healthcare, perhaps unlike any other business, any other industry, the facility plays a huge role.
The elevator isn’t working — that’s a problem getting the spine surgery patients down from the fourth floor. There’s just all sorts of things that happen in the facility. Of course, stuff like supplies and environmental services, these are all important things in the facility, and helping the family caregiver to see that domicile as an actual facility and how important a role that plays.
If you have stuff lying around a living room floor, just toys or whatever it is, it can cause a fall. That’s a huge risk issue to our mission and vision. That section is meant to do that. Then there’s a Self Management section, which has loads of very practical resources and tools to help you see yourself and manage yourself.
Finally, there is a section called Realizing the Vision, which is about the transition. It also has a number of very practical things in it about realizing the transition from life-sustaining family caregiver to end-of-life hospice family caregiver. These are two dramatically different roles with very different focus, and it requires a huge paradigm shift for the family caregiver. I once worried about, did he get enough to eat? Did he get enough sleep? Is he going to be able to go to work? All this sort of stuff. People worried about blood sugar and pulse ox and all these sort of things. Now, when you get into hospice, it’s time to focus on precious time. It’s time to focus on just being with your person and keeping them comfortable, which may in fact mean not feeding them as often or as much, or them sleeping more and more, they become less social.
These are the sorts of things that happen in the end-of-life stage. The caregiver really has to make a paradigm shift to go from “what are his vitals” to I just need to be there and be with him or her and make sure the death is as dignified and comfortable and peaceful as it can possibly be.
Sacopulos: This is such an important book, and so many of us have had to go down this path. I’m thinking about how useful this would’ve been to me as a caregiver of a family member. So thank you for taking this project on and being a leader in your own right. My guest has been Jennifer O’Brien. The book is Care Boss: Leadership Strategies and Resources for Family Caregivers. Jen, thanks so much for having been on SoundPractice.
O’Brien: Thank you, Mike. It was my pleasure.