Working Caregivers: The Invisible Employees

Being a Caregiver Spouse: The Power of Community with the Well Spouse Association and Bob Mastrogiovanni

• Selma Archer & Zack Demopoulos • Season 1 • Episode 15

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In this heartfelt and deeply insightful episode, we sit down with Bob Mastrogiovanni, a devoted husband, retired IRS professional, and co-president of the Well Spouse Association. Bob opens up about his powerful caregiving journey for his late wife Kathleen, who battled multiple sclerosis for decades. From the moment of diagnosis just two years into their marriage, Bob shares how their love, resilience, and adaptability helped them navigate the emotional and practical challenges of being a caregiving couple.

Together, we unpack the unique experiences of caregiver spouses—those caring for their life partners—and explore how this journey differs from other types of caregiving. Bob also dives into the vital role the Well Spouse Association plays in offering emotional support, community, and resources to those walking this path. If you're a working caregiver, a spouse currently in a caregiving role, or someone who supports them—this episode is for you. Don’t miss Zack’s challenge to organizations to step up and support the Well Spouse mission!

 

Episode Highlights:

[1:25] – Welcoming listeners and introducing Bob Mastrogiovanni, a retired IRS agent and caregiver spouse.
 [4:11] – Bob begins sharing his caregiving journey for his wife Kathleen, diagnosed with multiple sclerosis.
 [6:21] – How Bob and Kathleen made lifestyle choices to maintain a sense of normalcy after diagnosis.
 [7:50] – Balancing full-time work and caregiving, and the role of professional home caregivers.
 [9:28] – Discovering and joining the Well Spouse Association and eventually becoming co-president.
 [11:13] – Why spousal caregiving is different and how Well Spouse provides vital support.
 [13:05] – The therapist recommendation that led Bob to Well Spouse.
[16:46] – Employer flexibility: how the IRS helped Bob stay employed while caregiving.
[17:56] – Bob’s advice to employers: educate HR on caregiver challenges.
[19:38] – Why caregivers should communicate openly with employers.
[21:51] – Credit hours, workplace flexibility, and practical tools that helped Bob balance work and caregiving.
[22:52] – The emotional cost of burnout and delayed caregiver identification.
[23:16] – What Bob would tell his younger self about family, caregiving, and preparation.
[24:30] – Overview of Well Spouse programs: Zoom support groups, chat forums, respite weekends, and more.
[27:07] – Zack challenges an organization to be the first to donate and show support for Well Spouse!

 

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.

Bob Mastrogiovanni:

Spousal caregiving is a little different than other caregiving, because this is your life partner and your most intimate partner, your financial partner, and quite frequently, when one of the partners in this relationship becomes disabled, one of the first things we notice is sometimes you immediately lose half your income. You know, it's usually two people working, and one of the partners goes out because of disability. The other factor is, this is your intimate partner. This is your marriage. It's not like caring for a parent or a child. This is your intimate partner in your marriage, and the disability may affect your intimate relations. Did you

Unknown:

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 demopoulos on the working caregivers the invisible employees podcast as they show you how to support working caregivers.

Zack Demopoulos:

Good morning, good afternoon, good evening. To all our listeners from whenever and wherever you're listening from, we really do appreciate you. My name is Zach demopoulos, and I'm Selma Archer. Hello. Hello, Selma. I don't know about you, but in New Jersey, it finally has become spring

Selma:

awesome, but we got a lot of rain here. Oh, okay, we need it. We're not complaining. Okay,

Zack Demopoulos:

yes, yeah, California definitely could. Could use some, some, some drenching without a doubt. Oh, how's that song go? It never rains in California. Oh, I'm not a singer. I'm not a singer. I don't want to keep our guests waiting any longer. We are just so excited to have Bob Mastro Giovanni with us today. Hello, Bob. How are you? Hi everybody. Thank you so much for for joining us today. I'm glad to be here. Ah, we're glad to have you. We're glad to have you. We're cutting into his baseball watching time right now. So we appreciate you taking a break from that you could join us. He's a big baseball guy, but how can you not be in New Jersey in New York area, right? So Bob is in the New York New Jersey area, Philadelphia area. He's and so Bob, tell us a little bit about where do you live, and tell us something kind of neat about the area you live in that maybe most listeners would know. Why

Bob Mastrogiovanni:

live in the best suburb of Philadelphia on the Jersey side.

Zack Demopoulos:

So what's so good about it?

Bob Mastrogiovanni:

Oh, we have, we have everything in Cherry Hill. Everything you need is here, and it's good educational system, and it's just a wonderful place to live, and we're only a few minutes from the big city, Philadelphia, awesome,

Zack Demopoulos:

awesome. Well, thank you for sharing that shout out to my my buddy in Deptford. Have you ever been to the restaurant river winds in? Deptford, Oh, certainly, yeah. Ah, that's my good buddy. 40 you'll have to go in here. Tell him, you know Zach, you might, you might get a free drink. I don't know.

Bob Mastrogiovanni:

I'll remember that

Zack Demopoulos:

that's recorded, so now he's got to do it. So Bob, let's get right into this. Selma and I again, very excited to meet you, because we had never heard of an organization that you're part of which you lead, called well spouse. So we'll get into that in a minute, and that's focused on Caregiver spouses, which we really haven't talked that much about. So we're really excited about that, but before we even go there, I know that you were a caregiver to your beloved and beautiful bride, Kathleen. And can you so? Can you tell us a little bit about your caregiver journey? Sure, sure.

Bob Mastrogiovanni:

Couple years before we were married, my wife had a variety of non specific symptoms, and then two years after we were married, she was diagnosed with multiple sclerosis. And in those days, it was very hard to diagnose. They had to wait and see what symptoms appeared, and then they because we were married in 68 so it took quite a while to get a diagnosis. For the first 25 years, she was relapsing remitting, and she would rest when she needed to, but she was pretty much self sufficient. But then she retired on disability when she could no longer work and she required help. At home, and I was a I was working. I worked for the federal government. I worked for IRS in Philadelphia, and I had been there for many years. I retired after 34 years of service. She did very well up until the last seven or eight years of her life, she was bedridden, and that required full time care, and I retired early to do that kind of care.

Zack Demopoulos:

Yeah. Thank you so much for sharing that. First of all, congratulations on 34 years of service with the federal IRS, hopefully you didn't see any of my returns coming through. But as we're approaching april 15 here, I just think we should thank you for the work that you did, because I know that cannot be an easy endeavor at all. Second of all, speaking of not an easy endeavor being a spouse and helping to care for somebody that you were fully in love with. 50 years of marriage is incredible love story in itself, but also starting to see things not be so normal soon after you get married, what was that like and how did that impact your work.

Bob Mastrogiovanni:

When we got the diagnosis, we both said we were going to try to keep things as normal as we could, as long as we could, and we would make decisions accordingly. So when we bought this condo, we bought one all on one floor with No Steps. When we had an opportunity, we traveled in the States, because the states has the ADA can't go to Europe. It's all steps and cobblestones and and everything in Europe. So we traveled the in the United States, and we we made our decisions based on trying to keep things as normal as possible, as long as possible, and we did a good job of that. We enjoyed quite a bit. We unfortunately didn't have an opportunity to have children, but we enjoyed our nieces and nephews and our extended family quite a bit. So she was quite happy, quite happy. She led a good life, and she was quite content. Just

Zack Demopoulos:

one more follow up question here, Bob, before you retired again, congratulations on your retirement, but before you did that, and not having children to kind of help you out. I mean, how did again? How did you manage having to go to appointments, having, you know, to and I know you probably got some help. But again, how, how easy, or how hard is that to be still focus on your job day to day. I mean, can you just share? Because this is the

Bob Mastrogiovanni:

I had, wonderful caregivers. Wonderful caregivers. One caregiver would come in the morning to help bathe her, dress her, feed her, and get her up and get her going. And once she was up and taken care of, I would get out to work, and then we had another caregiver that would come in the afternoon, make sure that she was taken care of in the afternoon. Then my employer was good enough to transfer me from Philadelphia to a smaller office here in Cherry Hill, where I spent the last 10 years of my career, coming home every day at lunch, using my lunch hour to check on her and to make sure that she was cared for, and then getting back to work. So I always put my eight hours in, but I was close enough to the home to do it. And you know, you don't always get those opportunities.

Zack Demopoulos:

Thank you for sharing your your story with us. Pop,

Selma:

so Bob, I was wondering, as you were talking, I'm familiar with, I'm familiar with Cherry Hill. I used to work at ADP. Oh, yes, yeah, beautiful, beautiful area. Just like you said, Yes. I was wondering in terms of your your journey, how did you arrive at? Well, spouse, and what is it that you do there? And have you had any experiences that you can share with people who are working caregivers? Sure,

Bob Mastrogiovanni:

I've been around 1992 or three. I went to my first well spouse conference, and the conferences were in person, and we would all gather together, and we had speakers and we had entertainment, and it was really wonderful. A friend of mine stayed with my wife for the weekend while I was able to go to this conference. Then, in the 90s, I set up a few conferences for them here in Cherry Hill, and. Uh, at a local hotel, and I ran the conferences for a couple years. Shortly after that, I was asked to join the board, and I I put them off until I retired. And when I retired, I joined the board in in 2004 and I became the treasurer. And as the treasurer, I did all the things the treasurer does. And because I was with IRS, I filed the tax returns and that sort of thing. And then I became the president. And then I had a stint where I went back to treasurer, then I went back to President. I am now co president with Laurel Whitman, who's in Virginia, and Laurel handles the programming, and I handle the administration, the things that have to be done administratively.

Selma:

Yes, so and follow up just a quick question, what would be the one thing you would say to our listeners about well spouse, someone that maybe is a caregiver for their spouse currently and is not familiar with what well spouse does. Well

Bob Mastrogiovanni:

spousal caregiving is a little different than other caregiving, because this is your life partner, yes, and your most intimate partner, and your financial partner and all of that. And quite frequently, when one of the partners in this relationship becomes disabled, one of the first things we notice is sometimes you immediately lose, lose half your income, because the you know, it's usually two people working, and one of the partners goes out, it's either lost income or severely reduced because of disability. So financial factors are a big factor. The other factor is, this is your intimate partner. This is your marriage. It's not like caring for a parent or a child. This is your intimate partner in your marriage, and the disability may affect your intimate relations. And in addition, then there's raising children, and you know your partner in all the decisions relative to raising the children. So it's quite impactful on the marriage. You know, I highly recommend well spouse, because well spouse is a place where you can find support in a positive way with other spouses, and you learn that you're not alone. You're going through this, and other people are going through it as well, or have already gone through it, and you learn from one another in those support groups. It's very, very important.

Selma:

Thank you for sharing that. It's very helpful. You

Zack Demopoulos:

mentioned that you heard about them in the early night. How did you hear about them?

Bob Mastrogiovanni:

Well, my wife was having difficulty adjusting to her loss of function, so I took her to a psychologist. I took her to a psychologist to help her wrap her mind around the fact that she was losing her functions and she didn't want to go in a wheelchair, and she didn't want you know she was fighting it a little bit. Now, fighting it kept her going for 25 years, but now it was working against her. So I took her to a psychologist, and we talked, and she said, Well, yes, I definitely think you can benefit speaking to my wife now, you could benefit from some therapy, and I'll set up some sessions, and you come to the sessions. And she turned to me and said, and you have to join a support group.

Zack Demopoulos:

I love Kathleen. May her memory be eternal. Oh, my goodness, I love her.

Bob Mastrogiovanni:

So that's how it all started, and the therapist looked up well spouse. And at that time, the office was in New York. We're currently located in Freehold New Jersey, which is sort of centrally located in New Jersey. I'm

Zack Demopoulos:

so glad you shared that, because someone I just did a podcast with Canadian care advocates, and one of them works for the University of Alberta, and they talked about how they're trying to improve the awareness and education of healthcare providers, so that when they do see somebody that might be tired or or they're caring for somebody, they can maybe give them some assistance, like this therapist did for you guys. Because I'll be honest with you, most primary physicians and healthcare, they don't, they don't know where these resources are. No they're

Bob Mastrogiovanni:

dealing with the disease. You have, multiple sclerosis. We're going to deal with that the emotional end of it. And. All that you have to find a way to deal with that yourself. And a support group is a great thing, and the companionship that you develop with your friends, you learn from them and you support one another. It's invaluable. One

Zack Demopoulos:

of the quick thing that you mentioned you and I spoke earlier, Bob, and you mentioned to me that you did get to hear the great governor Marty Schreiber, who's also been a fan of ours, uh, or we're a fan of his, rather, and we've read his book by two Elaine's Yes, and shout out to Paul Wynn for introducing us to you, Bob. And so you've heard Governor Marty speak to you guys, right? Your organization? Spoke to

Bob Mastrogiovanni:

us at one of our conferences. He was, he was one of our guest speakers, and he was wonderful. Yeah, Marty is a great guy. So

Zack Demopoulos:

he talks about my two Elaine's, did you experience that my two kathleens? Did that help out? And No, his

Bob Mastrogiovanni:

wife had dementia. Now we're not, we're not disease specific. We we cover all diseases. What's common is that it's the spouse. So he was dealing with dementia, I was dealing with MS, different diseases, yeah, but there's a lot of commonality in that it's your life partner that you're losing. Yeah,

Zack Demopoulos:

I mean, the the things that you were bringing up are so important, you know, intimacy, you know your life partner, finance. I mean, it's, it's, we just appreciate you sharing that just do. Just change gears real quick. Here. You mentioned that your employer was good enough and flexible enough to have you still work with them and move you to an area that was going to be convenient for you. And I love that. Yeah, that is great.

Bob Mastrogiovanni:

I really appreciated that because there was an office on the other side of Chevy Hill, which was a short drive from my house. And, you know, I had to give up a little bit of my ambitions. I was a supervisor over there, over here. I'm not a supervisor, but I'm a worker. And I spent the last eight or nine years working in the local office where I could put my eight hours a day in. But by the same token, I was close enough to get home and get back on a moment's notice? Hats

Zack Demopoulos:

off to our employer. Hats off to the IRS. I know that IRS sometimes gets negative connotations, but let's get let's give it a positive one today. That was a grand move on their part. Do you have in your experience personally, as well as with well spouse. Do you have a couple of suggestions for our listeners who are employers? They are HR leaders. They are managers. Do you have a couple of suggestions for them on how they could be maybe more supportive, especially if they don't even know what caregiving is about?

Bob Mastrogiovanni:

Well, yes, they they should learn their HR. Their HR should definitely become educated on the issues facing caregivers today. Lillian Carter said, you're either, I hope I get this right. You're either going to need care, you're going to give care, or she she mentioned you're going to be a caregiver at some point in your life, and many of these people are still working, and when you're working, it's tough, it's tough. You've got the responsibilities from work, got the responsibilities from home, and you've got to balance the two. And the HR community should be educated on these, on these issues. Like I said, I was given the opportunity to go to a smaller office. Philadelphia is a big city. It's a bigger situation. I gave up a little bit by going to the smaller office, but it was what I needed. A lot of times people have to forego their career in order to continue to caregiv and I was able to do both. So just

Selma:

continuing with your with your journey, Bob, you, you obviously had to come forward and have a conversation with your employer to have you know that switch in your location? Yes, so and some people are not. Are, at least so far, are not comfortable with that. But what do you think? What suggestions do you have for employees who are caregivers, to get the support they need from their employers?

Bob Mastrogiovanni:

Well, it's it's not like you can keep it a secret long. If your caregiving is intense, it's going to show it's going to demonstrate itself in one way or another, whether it be health insurance, medical claims, your. Having to leave on a moment's notice, or, you know, things like that, it's going to show and I think it's better to be upfront about it than to try to hide it. Because if, if you're if your employer has an HR department that is educated on these issues, they should realize, especially with the sand sandwich generation. Now we have, we have some caregivers who are caregiving for a spouse and a parent at the same time. Yeah, you know, so it's, it's, it's important. It's very important. Yeah,

Selma:

that's, that's a tough one. Yeah. People are really struggling if

Bob Mastrogiovanni:

you're doing a certain level of caregiving, intense caregiving, it's going to show it's going to come out in in some form or another, and it's, I think it's better to be honest about it and deal with it, rather than try to hide it. In my case, my employer has something called credit hours, where I could work eight or not. I could work nine hours one day and bank an hour, and then if I needed to take that hour, it wouldn't count against me if I needed to take it later in the week or or whatever. I think the credit hours, especially for the frequent doctor's appointments and that sort of thing. It was just it was such a valuable tool to have credit hours to be able to go against. Now, they had rules. It was federal government. They had rules. You know, you could only accumulate so many, and you can only carry over so many and, you know, they had rules, but the rules were flexible enough to allow me to care for my wife. That's great. I

Zack Demopoulos:

love that. I love that credit hours. That's kind of like the casual Fridays, right? Salma, when we still have in corporate. You know that, right? Right? You know, work an extra hour a day for the four days, and then take your half day off on Friday, you know, which is really nice. Yeah, we'll just close up with this one. Bob, you know, you've already given us some great tips for employers. You know, get to get HR involved. Get them to educate. I love that. That's a great that's a great suggestion that Selma and I are trying, trying to do actually work with work with HR departments, so that we can educate and raise their awareness and empathy, ability to empathize, and then you've got some great tips for for working caregivers. You know, sooner or later, it's going to show you're so that's so true. So true, Bob. We can only hide it for so long until, you know, somebody said once, I think it was on our Canadian podcast, Selma, but somebody said caregivers don't identify as caregivers until they have burned out, and then it's almost too late.

Bob Mastrogiovanni:

Exactly, exactly. That's very true. Yeah, yeah.

Zack Demopoulos:

But the but the question that we like to close up with you, Bob and again, thank you so much for your time is, what would you advise the younger Bob, you know, before you jumped on his journey, are there any tips that you would give young Bob? Not that you're older or that much older, but

Bob Mastrogiovanni:

Well, I guess the only thing I like I would attempt to spend more time with my family. We tried. We did as much as we could, but I think early on, we were traveling and we were doing different things and everything, I would have spent more time with my immediate family so that they would have had a greater appreciation for where Cathy was heading, the direction she was heading in. You know, they, they always saw her in a normal situation, and they always, they really didn't get a an appreciation for what it felt like heading for total disability. You know she was, she was going to be totally disabled, and they didn't have an appreciation for it until she became totally disabled.

Zack Demopoulos:

Okay, that's a great reflection, Bob, that's thank you so much for sharing that that was very, very vulnerable and an excellent reflection. So thank you. Okay,

Bob Mastrogiovanni:

well, I hope your listeners get something from my presentation today, and I want to invite everyone to go to wellspouts.org wellspouts.org is our website, and one there you can join or donate. You can learn all about us once you become a member, you get the members only pages, and you can look up back issues of our newsletter and think. Like that. I think we have what we have. We offer support groups around the country, and now a lot of them are on Zoom, so therefore you can, you can join at a time that's convenient for you, and we have a calendar on the website. You could pick your your date. We have an online chat forum. You can type in you could type in questions, and people can can respond. We have respite weekends, where we gather now, where there's one coming up in Wildwood, New Jersey, where we gather and spend the weekend together on a respite weekend, we have lovely dinners, and we travel and we do a little sightseeing, and our seminars are coming up. We have quarterly seminars with Valerie McSorley, is our coordinator for that, and we have a member's publication, which is Mainstay, the newsletter that comes out quarterly. So we offer quite a bit. And as your Canadian friend said, usually they don't start looking until they're burned out and looking for something to relieve their burden.

Selma:

So just to clarify, Bob Well spouses available not only to people who are currently care caring for spouses, but also for people who have cared for spouses.

Bob Mastrogiovanni:

Yes, we have former well spouses who provides support for former and we have, we're getting a lot of younger well spouses now, and we have a special group for younger well spouses. And we're trying to put together a military well spouse support group. So yes, we're we're trying to meet the needs of our members. Hats

Zack Demopoulos:

off to you, Bob. Your tremendous advocate, incredible spouse, incredible caregiver. We're honored. Oh, thank you. We're honored to have you. We really are. And thank you for your time, and Selma and I will do our part promoting your organization. And every once in a while, like to throw a challenge out to our listeners. I'm going to do another one here. Selma, you ready? I'm going to challenge an organization that's listening in on Bob's great episode here today. And if you are really walking to talk, and if you want to create a culture of care, you know this is an excellent organization to donate towards, so that way you really are making making a difference. I know I joined your organization. I'm not a caregiver spouse, but, but I joined your organization and happily donated towards it, because I know that you need funding to get that message out, to educate Sure. So

Bob Mastrogiovanni:

nonprofit doesn't mean free. We have expenses to run the website, to run the databases, to get the thank you letters out. We do have expenses. So nonprofit is not equal to free,

Zack Demopoulos:

alright? So my challenge is out there, Bob, hopefully saw an organization, somebody's going to pick up on that and be the first to do it, and they will let us know about it, and then we will promote you first doing such an excellent, excellent accomplishment as that. So thank you, Bob. Thank

Bob Mastrogiovanni:

you Zach and Selma. I It was so nice to meet you. I'm so glad to know about your organization and any time I can be of help, don't hesitate to call on me.

Unknown:

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.