Employed Family Caregivers – The Difference Collaborative

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My compatriot, Geri Lynn Baumblatt, consults and advocates on the overlapping worlds of employees, family caregivers, employers, and support, especially in nursing. In short, bread winners also caring for family and friends with acute and chronic illnesses and disabilities. I picture these overlapping worlds as balloons mashing up against each other trying not to burst. If you’re a nurse, an employer, a boss, or a caregiving staff member, this chat about the Difference Collaborative is for you.

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Credits

Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: George Karavattuveeti, Carol Zindler, Olga Masevich, Pete Wendel, Alan Arriaga, Denise Brown, Mary Anne Sterling, Susan Murphy, Amber Soucy, MarlaJanWexler, Jeffrey Adams

Geri Lynn Baumblatt, MA

Caregiver Action Network

National Caregivers Association

Caring Across Generations

Center for Health Experience Design

Caregiving.com

Related podcasts and blogs

Family Caregivers: Hospital to Home

Engaged with Sax

About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show

Introducing Geri Lynn Baumblatt

In a social situation, when people ask me what I do, I say, “I’m a patient-caregiver activist focusing on people at the center of care (patients, direct care clinicians, and the people that support them). I’m on a mission to learn on the journey to best health to make health choices and decisions; to communicate health information; to support each other; to share what works.”  My compatriot, Geri Lynn Baumblatt, consults and advocates with a similar frame focusing on the overlapping worlds of employees, family caregivers, employers, and support. In short, bread winners also caring for family and friends with acute and chronic illnesses and disabilities. I picture these overlapping worlds as balloons mashing up against each other trying not to burst.  We welcome any opportunity to sit at the same table, virtual or in person. If you’re an employer, a boss, or a caregiving staff member, this chat is for you.

Health Hats: It’s so good to be talking to you. Didn’t we meet in the latter half of 2015 when somehow you found me to write a blog post with you?

Geri Lynn Baumblatt: Yes. We wrote a blog post together about how playing the saxophone helped with your health issues (Engaged with Sax).

Health Hats: That was fun. The best part was we became friends in the process. Now I think we’ve collaborated on six or seven different initiatives over the years.

Geri Lynn Baumblatt: I know we’ve done several panels together at patient experience conferences and aging conferences and family caregiver conferences.

Health Hats: Where were you when you first realized that health was fragile?

Geri Lynn Baumblatt: That’s frighteningly easy to say. I was in a car. A semi driver fell asleep, slammed on his brakes, jackknifed, and came straight for my parents and me. I didn’t see it because I hit the floor thinking we were going under the semi. I was a healthy 23-year-old. After that, I was stuck in physical therapy. My mom ended up having issues with her heart from that. My dad ended up with amazingly minimal impact other than broken bones. Life turns on a dime.

Health Hats: Geri, how do you introduce yourself in a social situation?

Geri Lynn Baumblatt: I introduce myself as somebody who’s been a family caregiver and is working to build a coalition to figure out how to help family caregivers in the workplace since we spend most of our time at work. I found that caregiving greatly impacts people’s health. When my mom was caring for my dad, we became more concerned about her health at some point than his health. I started to recognize that when I began participating more in caregiving. You spend most of your time at work, so by the time you get to the hospital, you’re already in a crisis. It’s hard to intervene and support people when they’re in that crisis. So, I see it as this place where health, human capital, compassion, and empathy all come together. More and more people try to balance work and caregiving.

Health Hats: If you’re introducing yourself in a professional scene, do you introduce yourself differently or the same?

Geri Lynn Baumblatt: I might say that I’m a co-founder of the Difference Collaborative. Five of us co-founded this organization. We see it as coalition building. We bring together working people who are family caregiving with employers. Employers increasingly lose people to absenteeism, presenteeism, and turnover. We also collaborate with health and human capital researchers Johns Hopkins and Purdue, who study how to help people with this problem. We add people who create products and services but have a hard time selling into the employer setting. But even when they do sell them in, they rarely get good utilization. You don’t think as an employee when you start caregiving, “let me talk to my manager or my Human Resources department.” If anything, a lot of people try to hide the fact that they’re caregiving because it increasingly pulls them away from work. The last stakeholder would be advocacy organizations like The Caregiver Action Network and National Caregivers Association. We think it’s going to take all these stakeholders coming together to collaborate to form a community.

Caregiving, working, and social isolation

Health Hats: Do you find that your target is small employers or large employers, or it doesn’t really matter?

Geri Lynn Baumblatt: I think it doesn’t matter. We’re mostly looking to partner with organizations that get it, that understand. That this is a real challenge for them and that it’s impacting their aging workforce and increasingly their young workforce in profound ways. We want to find the organizations that want to be thought leaders in this area.

Health Hats: When you say, the young, that’s because they’re taking care of kids as well as parents?

Geri Lynn Baumblatt: No, I mean that at least 20% of millennials are now caregiving and working. Not just caring for kids – caring for either an ill child, an ill spouse, for parents and grandparents. Increasingly you see people who are only having one or two kids and all the caregiving for their parents falls to them. It’s happening to them when they’re younger because their parents had them when they were older. I even have friends who had been caring for adult siblings who have severe developmental disabilities or issues like that. I have friends who had been caring for a spouse, a parent, and a sibling. You can see how this starts to break people down and socially isolate them, too, which we know is increasingly a big problem for health and wellbeing.

Health Hats: In some of the circles that I’m in now, people are increasingly turning to be independent workers, meaning they’re freelance, whatever. They have more flexibility in caring for children, partners, parents, whomever. So, tell me more about how the Difference Collaborative make a difference for these caregivers?

Geri Lynn Baumblatt: Right now, we focus on employers. So self-employed is also a huge challenge. We eventually would like to see for both small employers with one or two people, or employers that are less than 50 people could form coalitions, say in Chicago, where you can join and have access to some of these same resources that you probably couldn’t afford as an independent consultant. But having also been an independent consultant in the last couple of years that I’ve been working on the Difference Collaborative, you get both the good and the bad. When my mom broke her hip this year, I was able to leave and go up there for most of a month and be with her in the hospital. Luckily my clients were understanding because I work in healthcare. But they still have dates and deliverables. It’s still a serious challenge if you’re juggling multiple clients to say, “Hey, I’m going to be working out of a hospital for the next three days and if you needed me to do fieldwork, that’s not going to happen. I got lucky with my timing and didn’t have to do that. But I also have friends who have freelanced over the last 15-20 years. When they were doing intense caregiving as a freelancer, they had even fewer rights. They didn’t have FMLA, Family Medical Leave. Family medical leave is unpaid, but they didn’t even have that. They just had to tell them, “I’m not working for you.” Frankly, they lost clients. I’ve had that happen to a few friends even recently where they had family crises and their clients were not understanding about it. So, everybody needs this. It’s something we need to figure out for our society.

Manager creates a culture. Not enough.

Health Hats: In my experience as a nurse manager in an ICU many of the staff were parents and needed flexibility when their kids were sick or there was school stuff. I don’t remember that anybody was particularly ill, like chronically ill or disabled. But I know that for me it was a no brainer. We had to deal with this as a team. If this is a value that we’re going to have in our department, since we were 24-hours-a-day work, we had to build in the flexibility. It was a lot easier to do it with the team than my bosses. My bosses were strict, or they had an idea about how it should be. But then I would present this to the staff, “how are we going to do this? Because I have no idea.” I just thought we should be able to. We’re smart people. We’re nurses for crying out loud. But we did figure it out. We had to build in more part-time work. People were generous about covering for each other more than they might have been if we hadn’t done it together. But it wasn’t easy. It wasn’t easy at all. But, we did it. This was before my activism days. I was in my thirties. What did I know? It just made sense.

Geri Lynn Baumblatt: Would it have been easier if you had that support from your management team? That was just you – an empowered manager. That’s how I was. I remember when somebody on my team’s dog had cancer, I was like, “okay, go.” What are you going to do? You’re going to sit here all day and worry? You’re not going to get anything done. And by the way, everybody else is sitting around feeling anxious that you’re here. It’s contagious. One of the things we found when we surveyed 200 nurse family caregivers about these topics, it can either hurt the team, or it can make the team stronger. But it’s not going to be a null effect. It’s going one direction or the other. Managers are absolutely in the crosshairs of this whole thing. They are expected to be compassionate to their team, but it’s not just dates and deliverables. It’s the nurses. We have to do the work. It can’t be manager dependent. I can’t just be lucky enough to have you for my manager who gets it and says, “Hey, we have to sit down and figure this out as a team.” There has to be awareness building, and training on this for leadership and managers. Managers have to know they’re supported. I don’t know who’s going to want to deal with this in any working situation. It’s just too hard. Then how are we building in that redundancy? You’re saying it was hard, but you did figure something out. People felt cared for and they felt heard. At the same time, the people who weren’t caregiving probably often feel very put upon, “Oh, so this is all going to get dumped on me now.” So, you have to make sure that people understand you’re trying to help everybody. And there can be compassion fatigue. I think that is super important.

Compassion fatigue

Health Hats: Compassion fatigue. Oh, yes.

Geri Lynn Baumblatt: It can’t just be all of us donating PTO (Paid Time Off) to each other. As this problem becomes increasingly common, we’re not going to have enough PTO.

Health Hats: PTO sounds like a weak intervention.

Geri Lynn Baumblatt: People think if we help you with this immediate family caregiving need that’s going to be a month, six months, a year. Median family caregiving is five years. A broken hip or that medical event is just the beginning of the chaos. People, themselves, don’t know that. The caregivers don’t recognize that. And if the person also has dementia, it’s often more like ten years. If we’re not planning for this long term, there’s going to be compassion fatigue. This goes on and on and on. People live longer and longer, sicker and sicker, and they’re thinking, “this is still happening.” So, what we need to do, as you’re saying, pull the team together to plan, but also educate managers, team and leadership. Hey, you don’t know what you’re in for, it’s a much longer ride than you think. The short-term planning and stuff aren’t going to cut it. We need more redundancy. We need more flexibility. And by the way, that’s what people want anyway. We need more compassion. All of these things are things everybody wants at work.

Is anybody good at this?

Health Hats: Do you come across places that are good at this?

Geri Lynn Baumblatt: Yes and no, it’s gradations. There are organizations now that take this more seriously. There’s a large university, for example, that surveyed its workforce to understand how many people were increasingly drowning because they were caring for an aging loved one. They offered six free hours of geriatric care management. Understanding the problem and offering that benefit still isn’t enough. You can’t just create these resources. You have to go in and make sure that you’re helping organizations do culture change. It’s culture change, awareness building, and then giving people that training and helping them co-create what’s going to work. Because nurses are a completely different challenge than a sales force that travels all the time and it’s different than knowledge workers. So what we need to do is, our team, the Difference Collaborative, our goal is to co-create not only cultural change, but what are those solutions in your workplace? Your culture is different. What’s going to work there? We guess that there are things that are going to work for everybody. Everybody pretty much wants help with care navigation services for our healthcare [I hesitate to call it a system] fragmented mess. So, yes, you can give people time off and even paid time off. But if you don’t help them figure out what they’re doing as they try and solve these problems with that paid time off, you’re probably wasting a lot of time. Instead of coming back feeling like they have things in place and they have a good plan, now they’re going to come back just exhausted and the chaos is going to continue. So, there are things like that will probably work for everybody and then there are other things that are going to be work-specific. Nurses are the ones that we chose to focus on. Because what do you do? You can’t have nurses not show up for work. That’s not going to go well. Each of these things requires thinking. But, to your point, you worked with your team. Often the employees have some of the best ideas. In the case of nurses, we’ve heard that people are averse to staffing up. Okay, you can be averse to it, but there’s a tipping point between staffing up and paying registry nurses to come in. That gets expensive. They don’t necessarily know your processes. So, mistakes happen – quality and safety issues. That’s a real problem for the hospital. You start to hit these tipping points where people start to be more fungible with their thinking. But it really will take co-designing these things.  Co-design builds awareness. It builds empathy and compassion and helps people understand, “Oh, I’m working with a colleague who seems tired and grumpy all the time. Now I understand. They’re working all day and then caring for somebody all night.” There might even be things like adult daycare. We’ve done childcare as the population shifts; we need to look at.

Health Hats: Respite.

Geri Lynn Baumblatt: Absolutely.

Health Hats: Wow. You’ve picked something pretty complex. My hats off to you.  I love it.

Geri Lynn Baumblatt: I’m helping to care for my mom now, but much of the time, she’s pretty okay. But when something goes wrong now, because of her age, it’s serious and I drop everything and make sure we all know what’s going on. I keep getting reminded just how hard this all is. I’ve had friends who have lost their jobs, lost their homes, lost their marriages. You go through this process of long-term caregiving and often at the end of it, you realize you’ve become socially isolated. You’ve maybe dropped out of the workforce and, where are you? It’s very hard to come back from this. Family caregiving is at the root of so many problems with wellness and health and human capital and engagement, and basic community building. In many ways, it is a huge challenge, but it’s also a huge opportunity. So many people say, “Oh yeah, I’m doing that. But I never really thought to tell other people I’m doing that.” Or they don’t look for help or resources or to be in a place, be it an organization where my manager would be somebody who like you, who was even be empowered to work with me on this.

Recognizing success

Health Hats: How do you recognize success in your work? I’m thinking both short term and long term. So, you’re a caregiver, you’re a freelancer and you’re an advocate. So, day to day, what gives you juice in terms of success this week, this day, this hour was worth it?

Geri Lynn Baumblatt: There’s a lot of different ways. Awareness-building is hard to measure, but I think we see it. One way would be to measure employee engagement. Also, in terms of helping people stabilize their own health, I know when I was a caregiver and I was no longer able to do my regular workouts, I was spending all this time driving back and forth to Wisconsin. Then you’re sitting in hospitals for days eating not good food.

Health Hats: Right and sitting in that damn chair.

Geri Lynn Baumblatt: Exactly. It was insulting to me to be told to participate in a wellness program. I felt bad for not participating when I couldn’t maintain what I was doing, let alone improve it. If you want to help me with my health, help me with the caregiving. I cannot figure this out. My family is two doctors, a nurse, a patient advocate like me, and a social worker. So, if we can’t do it… There are lots of ways to measure success for employers in terms of attracting and retaining good people. I had one chief nursing officer telling me, “we’re losing so many nurses. If you can help me retain the good people I have, that would be a big deal.” But right now, if you told me I could go work someplace that just got this and had my back and was going to work with me on this, I would go there tomorrow and they would certainly have my loyalty. Even when I had people, whether it was family members or pets who they needed to go take care of, they were so incredibly grateful that they were working someplace that anybody would even work with them on that. That shouldn’t be the case. So, I think that there are a million ways to measure this. I think health is one of the big ones that we keep missing.

Health Hats: Health of the caregiver?

Geri Lynn Baumblatt: Yes. One that would not be that hard to measure, given the increasing amount of data collection we’re doing; we just need the data collection to be better and to remember to ask about these things. There’s not even a question now on employee engagement surveys about are you caregiving or do you have an aging parent who you expect is going to need your help in the next few years?

Now a word about our sponsor, ABRIDGE.

Introduce your fellow caregivers to ABRIDGE. Push the big pink button and record the conversation with your doctor. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!” 

Flexibility, loyalty, retention

Health Hats: Back to your point about loyalty. In my last real gig where I was a boss, we didn’t really pay that well. My flexibility was an attraction.  You’re right, the loyalty that comes whether the person is themselves dealing with chronic things or caregiving or a parent of young children, having that flexibility is worth thousands, if not tens of thousands to a person.

Geri Lynn Baumblatt: Oh yeah, your quality of life is so incredibly meaningful. We already know managers are key for your mental and emotional health, wellbeing, and health. It’s such a key interaction for helping people with that and helps them plan for this. It’s not going to be easy. But the people who care give aren’t the employees that you don’t care if they leave. The people who are loyal at work and work hard at work are the same people who are loyal to their families and work hard at home.

Health Hats: That’s interesting. I never thought of that.

Geri Lynn Baumblatt: Voya recently did a study of their employees and they found exactly that. That you know who you’re losing to caregiving are the good people who care. They’re the good people who care about their families too. Deloitte found the same thing. They found that they were losing high performing women in their forties. They’re thinking, “wait a minute, we’re investing and developing these people and their careers, and then where’d you go?” It’s not that we were going to get rid of those employees anyway, or they were the first ones who were going to be cut. No. It’s the high-value people who are the first ones to caregive.

Health Hats: So, a little bit of a different track. You’ve gone from being an employee and boss to freelance and co-founding. So how has your view of this dilemma changed? I’ve known you when you’ve had both hats and you’ve been talking about this since I’ve known you. Has your perspective on it changed being in a different role?

Geri Lynn Baumblatt: Yes and no. There’s nobody but me to turn to when I have to take time off for caregiving as an independent consultant. I try to communicate with my clients now proactively. Hey, just to let you know, here’s the schedule. As everybody on the planet, things could happen, but I happen to know that there is a chance things could happen for me. Luckily for me, that turns out in my line of work to be something that they see as like, Oh, well, you understand this experience firsthand. And in many ways, it’s something that gives us insight into the resources we’re creating for patients and family caregivers. So, I’m lucky enough to have that kind of feedback loop. But I will say for my friends who don’t work in healthcare. They’ve been shocked when good long-term clients have not understood when they’ve had to disappear for a week for caregiving. So that’s where I still think that the awareness-raising piece, just for society, in general, is paramount. Cause we’re not going to get anywhere until everybody understands what a challenge and a burden this is and how we as a society need to start thinking differently about all the different ways we’re going to support people, whether they’re independent or whether they’re working for an organization.

To reveal or not to reveal

Health Hats: The fear that people have for revealing their situation as I did when I was diagnosed with MS. Is it the same, saying I’m a caregiver?  What’s your advice to people?  Is it idiosyncratic? Do you have words of wisdom about an approach?

Geri Lynn Baumblatt: Right now, it’s too manager dependent. Like is my manager cool? Is my team strong and good? I ended up finding a couple of other people I was working with caring for parents and we would talk at work and that was incredibly helpful. I think starting an affinity group as a way to normalize it both for yourself and other people also shows that you’re taking some initiative. Or you could ask HR if they could start an affinity group for people caring for parents with dementia. I think though that’s why this awareness-raising piece is so critical. If we don’t help people understand how difficult it is, they’re not prepared for it themselves. But again, that empathy, that compassion fatigue, that long-term planning versus thinking of it as short term we need to help this one random person is not the way to go. So that’s why I still think that culture change and that awareness. For example, if you see colleagues who are caregiving, does the company have a kitchen? Could you guys cook meals that people could grab and take home? Or donate laundry services. There are different ways to start raising awareness. And I think that’s why the co-design piece is so important because every workplace is going to be different. And, it is hard right now because I had one manager who felt very bad for me but didn’t feel empowered to do anything to help me. Eventually, I reported to my CEO, who, of course, was empowered to tell me whatever he wanted. That was helpful to me, but that didn’t solve things for everybody else in the company who may or may not have been reporting to a manager who was going to get it.

Health Hats: So maybe one of the things I hear you say that might be a universal suggestion or piece of advice is to build some nonthreatening support first for yourself. So, when you say an affinity group or you know, that’s not having to make a decision to reveal your situation to a power dynamic problem, but rather a buddy.

Geri Lynn Baumblatt: I do think people need to start revealing this to their managers and teams more proactively. But this is a problem because often you’re in the middle of this chaos once it starts and you’re trying to manage that chaos. Inevitably your manager might know, but you don’t necessarily consciously sit down and have a discussion about it. Because again, you don’t know what you’re in for, what you need to plan for.

Health Hats: And you’re already dealing with the doctor or the hospital or the clinic or the insurance company or whatever, and now you’re going to deal with your boss. Oh my God, that’s unrealistic.

Honor the caregivers. Help the helpers.

Geri Lynn Baumblatt: Something that we’re hoping to do in the hospital setting with nurses who are family caregivers say, “You’re a healthcare organization that serves family caregivers. How about as a way to honor the nurses experience and learn from it is when they come back. Hey, you just spent all this time on the other side of the bed as a caregiver, as an advocate, what can we learn from your experience to improve what we’re doing?”

Health Hats: That makes too much sense, Geri

Geri Lynn Baumblatt: These are the ways that we can start to socialize it. It’s not that we’re asking people to bring up their experience but say, “Hey, you had this experience, you must have good advice for us. What can we learn?” It’s not rocket surgery. At the same time, we need to work with organizations to think about what is going to work in your setting to help people deal with this. If I were managing a sales team that traveled all the time, that’s difficult. But when I was traveling, sometimes 70%, 80% in certain times of the year for conferences and events, there was no backup for me. And I remember flying home. I had back-to-back conferences in Baltimore. I had to fly home in between because my mom was having surgery. I felt terrible that half the time I was sitting there going, “Oh my gosh, I hope this goes smoothly. Otherwise, I won’t be able to get back to give my next three presentations at the next conference. Had there been somebody we were training to be backups for me, that would have been huge stress relief for me. And it would have been professional development for somebody else and that would have been free. That wasn’t going to cost anybody any money and it was going to improve the redundancy and the knowledge base within the organization. Yes, some things are going to cost money: care navigation services or adult daycare. But places are going to be spending this money regardless. Whether that’s in terms of caregivers taking more time off work cause they’re caregiving, but also because they’re probably more likely to get sick and run down. There are all kinds of ways that employers are going to be paying for this in terms of turnover and healthcare. So, you can try and do the good things and address it upfront and use the money that way. Or you can deal with all the fallout from this. And pay the same money that way.

Health Hats: Geri, what should I be asking you that I haven’t asked you yet?

Policy

Geri Lynn Baumblatt: The big thing out there right now is, as a society, there’s what organizations can do and then there’s paid leave that most other countries do have for people. I know that the government finally just passed some paid leave for federal workers. We need to also think about that. It can’t just be on employers to figure this all out. I think they’re going to be ahead of the curve if they do, but as a society, we need more of a safety net for caregivers so that they don’t become the next patients. So that they don’t lose their homes, lose their livelihoods, and become part of the problem. We could easily support them early on and spent way less money doing it. Great places are working on this like the National Caregivers Association and Caring Across Generations.  I’m personally not a lobbyist. I’m happy to help with it, but I’ve never done work on the Hill. In terms of thinking about what else there is to do right now, people can take action. There are two things. One is I recently collaborated with the Center for Health Experience Design to create a webinar. The video is still available. That’s an easy thing to share with anybody you know to help raise awareness.

Health Hats: How great. You’ll send it to me, and we’ll put it in the show notes.

Geri Lynn Baumblatt: We researched nurse family caregivers in 2018 and now we’re doing a follow-up study with researchers at Johns Hopkins and Purdue. We’re now surveying nurse managers, nurse leaders, and HR directors who are at hospitals and health organizations. It only takes 10 minutes; it’s anonymous, it’s super quick. We’d love to get as many people participating as we can because we’re trying to understand the problem better and what is it that hospitals and managers would be willing to try and do to help these nurse caregivers?

Health Hats: Thank you. Geri. Yeah. Well, thank you. It’s always amazing talking with you.

Reflections

I learned a new word this week: Kairos, an opportune time for action. Geri shared several opportunities for action. Listen for the caregiving that certainly surrounds you. Explore it as a team. Seek solutions including within, small or large. Reach out to senior staff. Engage them on behalf of your colleagues. Emphasize flexibility and connection to established internal resources. Locate external resources. Share. Promote self-care as a company/unit value for everyone. Still have some energy? Advocate.