Working Caregivers: The Invisible Employees

Building Caregiver-Friendly Workplaces with Donna Thomson

September 12, 2024 • Selma Archer & Zack Demopoulos • Season 1 • Episode 1

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In this inaugural episode of Working Caregivers, The Invisible Employees, we are thrilled to welcome an incredible guest, Donna Thomson. Donna is a caregiver, educator, advocate, and co-author of The Unexpected Journey of Caring. She shares her personal caregiving journey and the powerful transformation that occurs when you become a caregiver. We dive deep into the challenges of caregiving, the impact on the workforce, and the need for employers to create caregiver-friendly workplaces.

Donna discusses the importance of flexibility and compassion in the workplace, offering practical insights on how leaders can support their employees who are also caregivers. We explore key topics from Donna’s book and learn how caregiving is not just about managing tasks—it’s about embracing personal transformation and understanding the value of care.
 
Episode Highlights:
[2:04] Donna Thomson's Background and Books
[4:25] "The Unexpected Journey of Caring"
[10:09] Challenges and Questions for Working Caregivers
[13:52] Employer Perspective and Business Leaders
[17:33] Resources and Support for Caregivers
[22:40] Caregiving in Canada and North America
[26:21] Final Advice and Contact Information

Links & Resources:

If you enjoyed this episode, be sure to follow the podcast and leave a review. Remember to check out our website at invisibleemployeeadvocates.com for more resources, and subscribe to our newsletter for updates! We’ll catch you in the next episode.

Donna Thomson  0:00  
You need to set the tone of safety in conversation about this topic and say that from this day on, we are going to be committed to trying to keep you our talented workforce with an understanding that we're going to work together to find the accommodations you need. We want loyalty and commitment, because we know you have that to your family, but we know you have it to your workplace as well. 

Speaker 1  0:31  
Did you know that in 2020 there were 53 million caregivers in the United States? And by 2025 this number is expected to grow to 62 point 5,000,073% of these caregivers also have a job. They are called Working caregivers, and they are invisible because they don't talk about their caregiving challenges. Working caregivers, the invisible employees, is a podcast that will show you how to support working caregivers. Join Selma Archer and Zach Dimopoulos on the working caregivers the invisible employees podcast, as they show you how to support working caregivers.

Zack Demopoulos  1:16  
Hey everyone. Hey Selma,

Selma Archer  1:18  
hey partner.

Zack Demopoulos  1:19  
How you doing?

Selma Archer  1:21  
I'm well, how are you I'm

Zack Demopoulos  1:22  
great. I'm very excited. We got an incredible guest today, and as you know, our show is all about highlighting amazing people that are making an impact in the care economy, meaning people who are having to be caregivers and care, whether it's an adult child with disabilities, or whether it's an elderly person, and there's no no greater caregiver advocate that I know in North America now, I say North America because that includes Canada. And it's Donna Thompson, hey, Donna, welcome. Oh,

Donna Thomson  1:55  
thank you so much. I'm so honored to be here in your inaugural podcast. Fantastic.

Zack Demopoulos  2:01  
We are honored as well. We really are. Just briefly, you'll be able to learn a lot more about Don in our show notes, but just briefly, I took this right off your LinkedIn. Donna, I love it. You're a caregiver, an educator. You're passionate about caregiver training and research engagement, and you're an author. You're actually an author of two books that I know of, one the four walls of freedom, which is amazing. You wrote after having a son with cerebral palsy, Nicholas and what that entailed, and having to leave your career and being a full time caregiver, I'm sure we'll talk a little bit more about that. And then the second book, which were is really the focus of what we want to do, and that is the unexpected journey of Karen, you and Dr Zachary White wrote that together. So we're looking forward to talking a little bit about that before we do that. Though I like to always just throw out to our guests. You're from Ottawa, Canada, which I don't know most people know that, but it's the capital of Canada. Share something interesting that our audience would like to know about Ottawa when they visit someday.

Donna Thomson  3:01  
Well, as you said, it's the capital of the country. It's not a very big city, but it is right on the border of Quebec, and so it's a bilingual city. It's also it's because it's a government town. It's a little bit like Washington, DC, and some people have called it the city that fun forgot and but, but those of us who live here might dispute that it's a lot better than it used to be as far as nightlife goes. And there's a huge blues festival going on right now. And our son is a music lover, and he goes with his nurses to blues fest, and he saw Nickelback the other night and Maroon Five. So he's having a good time.

Zack Demopoulos  3:50  
Awesome, awesome. That's incredible. Thank you for sharing it the fun city. You make it fun. I'm sure you and your family make it fun. Yeah, well, again, thank you for being here, Donna. Let's get right to our first question, and that is about your book, The Unexpected Journey of caring, the transformation from loved one to caregiver. Now Selma and I, as you know, are both caregivers, and I like the word unexpected because I was drafted into a caregiver like in a two minute phone call when my brother called me to tell me my father had a stroke. So this really appealed to me. And I found that, though it looks like a textbook on caregiving, it really is an excellent read for somebody who is either going to become a caregiver, is a caregiver, or someone that might be managing a caregiver, supporting a caregiver. Can you tell us a little bit about what was the goal behind writing this book? How did it how to become such an amazing book. Well,

Donna Thomson  4:42  
the actually, the story is that Zachary Dr, Zachary White is a professor of care communications, and at the time that we wrote this book, he was working at Queen's University in Charlotte, North Carolina, and. I was familiar with his blog, which is called the unprepared caregiver, and I was intrigued by what he was writing. He was writing about personal transformation that occurs, how your values change when you become a caregiver, how you become intolerant of other people and their lives. Sometimes, you know, after a year or two of caregiving, we look in the mirror and we almost don't recognize ourselves. And so I was intrigued by the authenticity and the originality of what he was writing about, which seemed to me to be so deep and deeply personal, and about that personal transformation. So I got in touch with him, and I said, I just want to have a conversation with you. Well, we began talking. He explored my work, and we thought, maybe there's a combination of our work that could be interesting. Is there a link between what I normally write about which has more to do with the practical advocating for navigating complex healthcare systems, how to thrive in a life when you cannot leave home and you're really bound to a person with very high needs, that's been my experience. And Zach my father had three strokes too when I was a teenager, and I also looked after with my sister, our mother, who had dementia for about the last 10 years of her life, and she died in 2018 at the age of 96 so lots of caregiving in our family and certainly in my life, and I was very interested in exploring the meaning of a life that is devoted to the care of others. How do we value that? And most of all, how does it profoundly change us? We cannot go back to the person we were before we began caregiving. So Zachary and I started talking, and we wrote this book without ever meeting each other in person. We only met after the book was already published, and my husband and I were going down for the month of March to Fripp Island, South Carolina, where we were going to get get away from the winter here in Canada. And we dropped in on Zachary and his family, and we hugged each other and just said, you know, oh, you're shorter. You're taller than I thought you were, you know. But there we are, and we we did find, I think, an important link between care communications. How do you find words to describe the most complicated ambivalent feelings where I'm feeling desperation and joy at the same time and these very complex experiences. And what Zachary is so good at is putting words and giving people the words to express what they're going through. And then I thought, well, if you have that language, then what can you do with it? Where can you go to find help? What are the building blocks of I'll use an over worked word, but what are the building blocks of resilience in this role? How? How can you stay in it over the long term and not die from stress and overwhelm? So that was the purpose of the book, really, and then to help people understand Who am I now, and what can I do with what I have in my life?

Zack Demopoulos  9:12  
It's not easy, like I said someone I've been in these roles, it's not easy going from everything's kind of in a compartment, okay, I have a job that I come home and I have children and a spouse and oh, and then I have a weekend, I can go play with some friends, and then all of a sudden, the blurring of lines, just all of a sudden, hits you with, if I go home, my person I'm caring for is there. So it's, it's that doesn't, that doesn't change that, that that doesn't have a compartment that's part of your life, whether you're sitting in a meeting or or what have you. And you talk a little bit about that, one of my favorite parts of your book is, uh, is it chapter five? You've got some amazing questions in there. If I could just share a couple, and maybe you can just tell me a little bit more about what you and Dr White were thinking. I posing this, but these are some great questions, whether you're on a journey or not, right, or you're about you're going to be on one. But how flexible is my supervisor? Do I need to change jobs? Can I even keep my job? Can I get home on lunch break to make sure everything is okay? Will and I love this one. This is so common, whether you're on a zoom call or in a conference call, will anyone notice if I'm checking my phone during meetings and subtly sending texts? Yeah, what was the purpose of you throwing these questions in? Aaron, what do you want someone to walk away with on that

Donna Thomson  10:37  
many people are in workplaces that are not caregiver friendly, there is simply no acknowledgement that many employees do have these responsibilities that bleed into the working day by by Love and necessity, and many people with either episodic symptoms or or progressive disease are going to need to be checked on frequently, and we don't want to cut off communication between someone who may need us Well. Zach, you know your father had a stroke, and Selma, you're a caregiver as well. So we all know that, how many times a day do do we call our loved one, call home, or call a relative, and could you check on mom, something like that? So we were hoping. I was hoping, because I wrote that chapter, I was hoping and writing that that people would, even if they didn't have a caregiver friendly workplace, they would be able to say, have a reflective process that where someone could ask themselves what, what would truly be helpful in easing my stress at work and helping me keep my employment. So these would be questions to say, yes, you know that that question about checking my phone that is very important to me. So if you know that, then that's the first step to having a conversation with your HR manager or your your director, to say, I am a family caregiver. I also love my job. Want to keep my job, but there are a few accommodations that would really be very helpful to me, can we begin to have a conversation about that, you know? And another one that I was talking to a working caregiver the other day, and she said, you know, the only place to cry is the ladies room or the bathroom. And, you know, I just thought, Okay, well, not every workplace is going to have a private space, but, you know, but maybe people could begin to shift their thinking around what is helpful, truly helpful a parking place that's close to the entrance. Wow. These are simple things that you don't know that you need them until you're running a long distance to get to your vehicle in in an emergency, or you've got to visit home over the lunch hour and come back in a hurry. So you know, we were trying to have a think and an anticipatory think about what kind of help is helpful for working caregivers,

Selma Archer  13:51  
Donna, when I when I first saw your book, the word unexpected, it really jumped out for me, and not just because caregiving can certainly be and most often is an unexpected journey. As Zach said, he was drafted into it. For me, it took a period of years, but I still didn't expect it. I thought my mom would continue to be a self sufficient and be able to take care of herself and live alone and and all that we just, we just don't think about it until it happens to us. It's also unexpected in the in the in the way that you don't expect to be in all of these different roles. You know, I've basically became a nurse and ministering injections and and doing all kinds of medical procedures for her and her ailments. So you really just don't expect a lot of the things that you end up doing for that individual, but keeping on track with with an another question I was wondering from. Different perspective, a caregiver perspective, let's look at the employer, the business leader, the business manager. That's HR supervisor who has that employee who they're checking on every day, or they're trying to get to that car to get to the emergency situation at home. What would be one thing that you would want those individuals in our audience who are the business leaders and the managers to walk away with after reading your book or looking at some of the work that you've done in this area, what would be the one thing you would say to those individuals?

Donna Thomson  15:36  
I would say that it's caregiving and work is not it's not an either or you can do both, and what you need, though, is flexibility and an acknowledgement of the worth of both of those roles, so that both roles can be honored and preserved and supported in the old days, women in the workplace, if they got pregnant, they were automatically fired because, you Know, caregiving and even motherhood, but caregiving and work were mutually exclusive. You do not mix one with the other. Today, in today's world, in an aging society with a shrinking workforce because of demographics, we have some of our most talented, most experienced workforce who are between the age of 45 and 65 at the height of their career, taking up caregiving roles. We you know businesses can't there's an economic argument to be made to create caregiver friendly workplaces, and it can be done. And in fact, some there is some research to show that it is more profitable to support people, because otherwise, what's the alternative? You're losing. You cannot retain. You cannot attract people who are very talented to your business needs, but because they are family caregivers, this is going to be the number one business perk and public policy issue of the next 20 years. I think you've

Zack Demopoulos  17:33  
got so many resources out there. It's complicated, you know? It's overwhelming. You've got an amazing blog called the caregivers living room, which is amazing. I just, I just went on it this morning, and you've got great resources in there and conferences that go on. There is work that you're doing with the Canadian Center for caregiving excellence. There's work you've done that employers could could actually participate in with McMaster continuing education. With some advice you would give. Let's just take it, not the caregiver. Let's take it from a manager who maybe sees this podcast, or any podcast talking about caregiving, and they're like, I need to take a couple of steps forward so I could be better I could be more empathetic. I could be more compassionate, because it's not easy. Right at the end of the day, many caregivers aren't self identifying. Selma says it took her years before she even realizes she is a caregiver. Well, maybe what's one or two tips that you would steps that you would suggest to a manager, to a leader, to an HR person, as to how get acquainted with this kind of work, so that you can be more empathetic, more compassionate, more supportive.

Donna Thomson  18:42  
Well, the first thing I would say is to read the book that you both have just written. It is a wonderful book

Zack Demopoulos  18:50  
that's a shameless plug.

Donna Thomson  18:54  
It's true. It's true. I think sometimes when we are fearful of doing something that might compromise our standing at work, and this is something we've often, you know, almost approached caregiving at work as something to be ashamed of, that it's going to harm our reputation as professionals. So I think we need a lot of reassurance. People who are in management at work need a lot of confidence building and reassurance that this is the right thing to do, and that, above all, it's doable. So your book, I think, is fantastic at showing people how it can be done and that it's not that complicated. The second thing I would recommend is taking the free online course that is offered. By McMaster University continuing education, and it's called Creating care caregiver friendly workplaces. And I, I co wrote that course based on the research out of McMaster by Dr Allison Williams, how to create care caregiver friendly workplaces, beginning with identifying leaders and champions who and the leadership of the company, getting everybody fully on board and creating a project. It's a project, like any other project that needs to be managed, to get people on board to give them the resources and tools that need to be in place, to give working caregivers accommodations that they need in order to keep their employment and not quit and give up because it's too difficult to manage two jobs At the same time in two different locations. But surprisingly, people are paying a great deal of attention to this social problem today, the problem of how to accommodate employees, who are family caregivers and so people know, you know, we know what to do to to create the kinds of workplaces that that are going to keep, attract and retain that workforce in an aging society, it's a very important that people begin to learn how to do this, and that it gets into The water supply of of normal business as usual, that it's not something, ooh, you know, like weird or or, you know, that this is not a second class of employee. You know, you're not setting up something that is less than you're addressing something that everybody's dealing with today in today's world. So in the same way that people now recognize that child care for healthy children needs to be accommodated, we just know that it does in all walks of life. So now it's going to be about seniors, and it's going to be about spouses and children with disabilities too. Anybody with an extraordinary need for care must be accommodated in the workplace too. When

Selma Archer  22:36  
we spoke earlier Donna the other day, we were talking a little bit about our different comparisons between the US and and Canada in terms of the data around working caregivers. And I think we talked a little bit about about 73% in the US of employees are dealing with some type of caregiving issue. Can you talk a little bit about what that looks like for Canada?

Donna Thomson  23:03  
Yeah, I think this statistic today for Canada is 65% but you know that could be low. And it may be that the research is, has, is, is more accurate in the United States, I think we have to assume that that the vast majority of the workforce also have care responsibilities at home, particularly with this within a certain age demographic. So at the stage where you've got employees who are at the age where they are likely to be caring for aging parents, they're going to have care responsibilities, something that we describe in the book caregiver identity theory. If you think about your life as a pie, where when everybody's healthy, caregiving for, you know, for your mom at the beginning, Selma would be a small piece of the pie. And then you've got, you know, fitness, work, family, holidays, whatever, your whole life, yes, but when caregiving begins to eclipse all of those other areas of your life, and you suddenly are realizing that you actually have a full time second job where because significant number of that 75% are are doing more than 20 hours a week of caregiving. So, so that's almost like a second full time job. This idea where, you know, you begin by thinking, Oh yeah, it's fine, it's normal. But then it's a little bit more and a little bit more and a little bit. More. And this is the unexpected element or characteristic of caregiving, where you suddenly go, what has I have lost control here of my life, and I no longer have choices. There's no choices. What do you mean? Go on a holiday? What do you mean? Buy a new car. What do you mean? Yeah, yeah.

Selma Archer  25:22  
You realize that the most of the pie now is the caregiving, and there's just a little sliver of the pie that's your social pie. You don't have much left of that, for sure. No, the

Zack Demopoulos  25:36  
US, we have about 53, million caregivers. What? What's the Canadian stat? Do you know off top your head? I think I saw it in one of your infographics, 8 million. 8 million. It

Donna Thomson  25:45  
will, yeah, yeah, it's 8 million. Now, the new stat came out from Statistics Canada.

Zack Demopoulos  25:50  
Tell you what, anybody in a leadership role in government is listening to our podcast right now, I want to put a charge out that our, both our countries, could team up with over, over 60 million people caregiving in North America. We need to, we can. We need, got to work together and do stuff like Canada is doing some amazing things. My hats off to Canada. And I know America is doing as well, but we've got so much work to do. One last question I'll ask and then, and then you can share with our audience how people can find you, because we could talk to you all day, Nona, and we'll have you back. Hopefully. I liked your story about you and Dr white not meeting each other to offer to your book. Selma and I have been working together on this project for six years, and we always met each other twice, and we said the same thing to each other, I thought you were shorter. I thought you were taller. No. Selma and I used to work together in a pharmaceutical company. She was in corporate legal, and I was in corporate HR, and we were friends from then. And we've seen a lot. You mentioned how, you know, women who became pregnant and had delivered a child got fired. We've seen a lot in our day, unfortunately and fortunately, good and bad things. And you met, you made a great comment about you know, people are afraid to speak up and say, I'm a caregiver for right reasons. I mean, there is data and research out there that shows that there are negative consequences to sharing that with an employer, with a manager. You're coming also at this personally, Donna, with such tremendous personal experience with all your family that you've been involved in caregiving, as well as all the people you've talked to who caregiving work. What's one piece of advice you would give to, let's say, a leader, an HR person, a manager? Let's say managers. Let's say what would what piece of advice would you give to a manager, knowing that it's very difficult for somebody on your team to tell you their story about a care, about their caregivers, is there, do you have a tip that they could do, maybe to try to make that environment a little bit more friendly, a little bit more safe, so that they could share that story? I'm just curious, from your experience, personally,

Donna Thomson  27:59  
I think it's worth beginning by locating a member of the leadership team who is or has been a caregiver, and having that person stand up and introduce the idea that it is safe to talk about this in this workplace from this day going forward.

Zack Demopoulos  28:23  
That's brutal. That's awesome. That's a great suggestion.

Donna Thomson  28:26  
If I am the director of sales, and I'm a caregiver, and I'm telling you, I'm a caregiver, and we're going to start talking about this, and if I can do this, I can be this person, then it's safe. This is a safe space because I'm I'm a leader here. I'm indispensable in the company. They're not going to fire me. And I'm telling you, I'm a caregiver. So I think you know you need to set the the tone of safety in conversation about this topic, and say that from this day on, we are going to be committed to trying to keep you our talented workforce with an understanding that we're going to work together to find the accommodations you need. We want loyalty and commitment, because we know you have that to your family, but we know you have it to your workplace as well. That

Zack Demopoulos  29:28  
is an awesome suggestion. Donna some and I have have experienced that there are leaders out there that have come forward and have talked about their experience and how that has really opened up the culture like we have a chapter, right? There's a caregiver in the C suite corner, right? You know, right? We cannot thank we're out of time, but we can't thank you enough, Donna for being here. How can our audience get in touch with you? Well,

Donna Thomson  29:54  
you can find me and contact me through my website, which is. Is the caregivers Living Room at www dot Donna thompson.com, and there's no P in Thompson because we're Scottish originally.

Zack Demopoulos  30:13  
And I want to encourage our listeners to also connect with you on LinkedIn. You have incredible posts you always are sharing, uh, great articles about the example you just gave, employers doing good things, or employees with challenges and sharing those stories. I mean, we've got to share more stories. I think the more stories we share, the more that will help move this needle. So absolutely,

Selma Archer  30:39  
where can we buy your book? Donna,

Donna Thomson  30:42  
oh, thank you for asking you can buy it at all online booksellers and all public libraries have it as well. Awesome, great. And we'll

Zack Demopoulos  30:52  
put those links in our in our show notes as well, so our listeners can find that easy. Donna, thank you so much.

Selma Archer  30:58  
Thank you, Donna,

Donna Thomson  31:00  
so much. Thank you for all you do for working caregivers too.

Speaker 1  31:03  
Thank you for tuning in. Be sure to catch new episodes of working caregivers, the invisible employees podcast every other Tuesday. Please also visit our website, invisible employee advocates.com to subscribe to our newsletter, purchase our book and learn more about how we can help you strengthen your workplace to become more supportive of working caregivers you.

Transcribed by https://otter.ai