AARP Says Caregivers are Critical to Families

Caregivers are essential to families. Sometimes they have to make hard choices between taking care of a loved one or working. Connecticut Paid Leave gives them some relief by giving up to 12 weeks of income replacement, so you don't have to make such difficult choices. 
The AARP was instrumental in helping to get the Paid Medical and Family Leave Act signed into law, knowing that caregivers needed more flexibility. On this episode I spoke with the AARP Assistant State Director of Advocacy and Outreach, Anna Doroghazi. Anna talked about the coalition that banded together to make sure CT Paid Leave became a reality. She also talked about caregivers and the increasing need for intermittent leave, a provision CTPL allows as well as reduced schedule leave. 
Also joining the conversation was AARP volunteer Barbara Munck who testified on behalf of the CT  Paid Family and Medical Leave Act. She is a trained volunteer and caregiver team and presents their Caregiving Roadshow around the state. Barbara has had extensive experience with being a family caregiver to her sister, mother, child, and husband. Her experiences made her realize how important CT Paid leave is to caregivers across the state. 

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Transcript

Nancy Barrow: 0:01

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. Well, welcome and thanks for joining us on this podcast. The discussion today is about caregivers and our friends and partners at the AARP, who we have worked very closely with at Connecticut Paid Leave. AARP is a wealth of knowledge about advocacy for the aging population, caregivers, and their importance to the aging community. And joining me is Anna Doroghazi, the Associate State Director of Advocacy and Outreach with the AARP of Connecticut. So nice to see you, Anna. It's been a while!

Anna Doroghazi: 1:00

It has been a while. I am really excited for today's conversation, and thank you so much for letting AARP join you today.

Nancy Barrow: 1:06

Well, thank you so much for being here and also joining in the discussion is Barbara Monck, who is a trained volunteer with AARP Connecticut and is on the caregiving team and also presents their caregiving road show to community groups around the state and nationally, and they share their personal stories of caregiving and experiences to help those who are now caregiving and eventually we all will be, won't we? Well, Barbara, thank you so much for joining us and telling us your personal story, I really appreciate it!

Barbara Monck: 1:37

Well, thank you for having me. This certainly has been a topic of interest for me for a very long time, and I'm just so pleased the state of Connecticut now has a program in place for paid family and medical leave.

Nancy Barrow: 1:50

What was it about Connecticut Paid Leave that meant so much to you personally?

Barbara Monck: 1:54

Well, because I lived it. I mean, I was lucky that I had a job that had benefits that I wasn't losing any income when I took sick time or vacation time or personal time to be able to take care of my family over many, many years. I can't imagine the stress for someone who has that financial loss, as well as just the stress of having to care for someone else and juggling home, juggling your work, trying to make everything work. I was overwhelmed. I just can't imagine what it would have been if, financially, I was overwhelmed as well.

Nancy Barrow: 2:31

And we're happy that you're an advocate for Connecticut Paid Leave, and we know the AARP is too. Anna, you've been a really big partner, and you've done a lot with us.

Anna Doroghazi: 2:39

Yeah, it's an important issue for older adults, really, in two ways. You know, there's a great quote that we talk about in our caregiver road show presentation that's by the former First Lady, Rosalynn Carter, which is, you know, there are only four kinds of people in the world, those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers. Wow. And I think, isn't that wonderful? Yeah, I think older adults can really see themselves somewhere in that quote, or in lots of places. So maybe you're an older adult who is caring for, you know, a spouse or a partner, or you cared for your parents when you were, you know, in your 40s or 50s, and your parents were older. Maybe you're an older adult who's at a point where you are facing an illness or some of the the physical limitations of aging, and you're thinking, you know, how can I get a little assistance that I might need to continue living independently in my own home. So the caregiving issue touches older adults and really people of all ages from so many different angles, and that's why AARP supported it in Connecticut and continues to support it, both on the federal level and in states throughout the country.

Nancy Barrow: 4:00

That's interesting, because the national program, they narrowed it down to just two weeks of leave. They couldn't even agree on that, which we even know that 12 weeks isn't enough. What do you think the culture is in our country and other states that aren't allowing this to pass?

Anna Doroghazi: 4:19

You know, I think one of the fundamental issues that I sort of keep going back to when I think about, what are the barriers to more states and, you know, the federal government really embracing paid family leave policies is that we don't do a great job of, culturally and as a society, valuing The work of caregivers. Maybe that's because this has traditionally been female labor. There are certainly millions of men who also provide this care. But I think historically, this was thought of as women's work. It was thought of as something that you just have to do. But there is a. Real and very important economic value to these unpaid contributions that are made by family caregivers. They are, at the end of the day, the backbone of our nation's long term care system. And without them, I mean, we, we would really see a certain level of collapse within our health care system.

Nancy Barrow: 5:19

Which is struggling anyway, right, right?

Anna Doroghazi: 5:22

And you knkow in addition to these care gaps that we see, you know, we know that we need more folks, you know, working in nursing homes, working in home care, there's a really important workforce shortage in those areas. But on top of all of that, family caregivers are providing 34 billion hours of care per year. You know, nationally, that's sort of our best estimate of the hours of unpaid care that they're providing. Without that care, we would need to pick it up in another way. We would either see much worse health outcomes for folks who need care, or we would see, you know, other parts of state and federal governments having to pay for that care in other ways.

Nancy Barrow: 6:05

Yeah, subsidize it somehow. What does your research show are the leading concerns for aging people in our state, and does that reflect a national trend?

Anna Doroghazi: 6:15

So a lot of aging folks have concerns around being able to live safely and independently as they age. There are very, very strong preferences, you know, in Connecticut and nationwide. And the survey work that AARP does that backs up the idea that if folks do reach a point in their life, and you know, a majority of people do at some point, need, you know some level of long term care that folks want to receive that care in their home or in another community setting. So that really is top of mind.

Nancy Barrow: 6:47

And I think we're living longer, right?

Anna Doroghazi: 6:49

We are and I think that's a really important factor for, you know, for policymakers, for all of us, to keep in the back of our minds that, as you know, demographically, in Connecticut and nationwide, we are an aging state. We're an aging country. And in I think it's 2034, older adults are going to outnumber children under the age of 18 for the first time ever in US history.

Nancy Barrow: 7:16

Wow, that demographic is crazy!

Anna Doroghazi: 7:19

Yeah so it really, I mean, that's a really, really important shift for how we think about a lot of things, but one of the things that we need to think about is, you know, yes, we might be living longer, but not all of the years that we've added on to our lives are healthy years. So we might be looking at more years in our future where we're going to need some some level of support, or some level of care. And you know, that's why it's absolutely critical that we support the people who provide that support, and that's family caregivers.

Nancy Barrow: 7:49

That is. Barbara, let's get into your personal stories of caregiving. So tell me a little bit about your

Barbara Monck: 7:54

Well, I guess caregiving has just been a part of my life for so long I didn't even think of it as so unusual, but when I reflect back, I had a sister who suffered a traumatic brain injury when she was 21 years old. And for years, my parents were divorced, managed to care for her in a cooperative way, which was shocking in and of itself, but they needed a break every once in a while. And you know, I would, you know, step in, spend some time with my sister, maybe take her out to do something. But, you know, they both working full time, and, you know, having, having to care for her. So that's certainly something, you know, I observed. And when, when my father died and my mother was not able to take care of her in her home anymore, she did go to a group home. And once that transition happened and my mother had health issues, I was made her conservator, so I was responsible for making sure her care in that group setting was appropriate, you know, we would have quarterly meetings with staff. I'd have to take time off from work if the group home was more than an hour away and the meetings were maybe 90 minutes long, and the 90 minutes back. And so I maybe go into work in the morning, and then I'm gone. So, you know, just, just knowing that kind of the stress was going on. Then I had a child who had some medical issues, had three surgeries before the age of seven, so I understood what it was like to also be caring for a child at that time. And then my mother, she had a heart attack and heart disease and COPD, and she stayed in her home for as long as she she could, and her last hospitalization was, well, this is it. She really can't take care of herself anymore, but during, you know, during that time period, I'm taking her to doctor's appointment, and making sure her medicines or prescriptions are all set up so she's taking the right things at the right time of the day, answering her calls. You know, luckily, she lived about 10 minutes away answering her call. I'm having a problem. Can you come help me? So, you know, running back and forth, making sure that things are taken care of, taking her grocery shopping, all of that, and a wonderful husband who also stepped in to make sure those things were taken care of. You know, he would help by picking her up for a doctor's appointment and driving her to the doctor's appointment. So I only had to leave work to go to the doctor's appointment, not going pick her up and then go to the doctor's appointment, but was really a team approach to make that happen. My mother died, and I have to say, there was certainly a sigh of relief. It's, you know, okay, I have a little little my free time left, and, you know, about six months later, my husband was diagnosed with non Hodgkin's lymphoma, so he he had to go through chemo and radiation and all of those treatments, and that was at bay for a few years, and it came back. And he had cared to, you know, more care. He had a stem cell transplant, and that was rather serious business, and that took an awful lot of time as well. Meanwhile, I'm still my sister's still there, and she needs her assistance as well. So all of these things are going on at the same time. And then he was at bay for a little while. And then during one of the routine scans, he had pancreatic cancer, and he lasted, oh, maybe 16 months after the diagnosis. So again, going through treatments and hospital stays and, you know, just trying to deal with all of that that's going on. So over my course of my life, I certainly have had many instances of many different kinds of caregiving. And I had some surgery in the 90s, and my husband had to take time off to take care of me. So, you know, like Anna was saying, the Rosalynn Carter quote is, you know, we we're all going to be there someplace on that spectrum during our lifetime.

Nancy Barrow: 12:16

Did it occur to you what you were doing, or did you think you were a good daughter, wife you know sister?

Barbara Monck: 12:24

But I think I was savvy enough to know that there were some resources out there and to take advantage of them. For example, when my mother was hospitalized, and this happened several times and several times she had to go into a rehabilitation facility and whatnot. I learned, well, you got to really take advantage of that discharge coordinator in the hospital to find out, you know, what information is out there and what what you need, and finding out, oh, you you should be able to get some services in your home so that when she was, you know, returned to the home, that that could happen. But I felt a little bit like I was juggling because there wasn't, you know, a road map to tell me which way to go which you know, now with my volunteer work with AARP, I see there's a road map out there that there are resources out there, but I didn't expect anyone, necessarily, To take care of me in that way. I did have an employer that did offer some support services as well that you were able to take advantage of. They really tried to get information out out to their employees on what resources were available. So that was helpful. But generally speaking, you know, it was like, Okay, well, I'm a mom, I'm a daughter, I'm a wife. This is what I do. You know, it's just, you know, you would do anything for the people you love, and you just go and do it.

Nancy Barrow: 13:51

And women do it so well, we can juggle everything, and you're an AARP Connecticut volunteer in the program called Caregiver Road Show. And when your tank empties, because you care for all the people that you've loved, who helps you fill it up? Does this caregiver Road Show help kind of show you a little bit of how you can process it all?

Barbara Monck: 14:20

Well, if we give permission slips in the program that is saying to you, you can take a break. You know, it may not be a long break. You have to find something that's going to fill you up one way or the other. I always like to talk about my my secret weapon that I carry with me all the time, and that's breathing, that I can always take even 10 seconds to take a few deep breaths, to try to center myself and and let myself, you know, calm down or be there that it's okay to read a book or listen to music or, you know, find a friend, you know, to spend a little time. Of ask, you know, asking others for help, I think particularly, you know, for women, asking for that help, when you think as though it's your your job, you're supposed to be able to take care of things, that it's okay to ask someone. When my husband was sick, I had a neighbor who would come in and spend time with my husband during the day. I didn't have to worry about him when I went off to work, and it was okay to ask him to help that I wasn't being I wasn't taking advantage of people it was I was just available to be there for for him when his his wife had illnesses as well. So it's okay to ask for some help. People want to help, if you know, you just have to ask them. We talk about forming a team, and that team, of course, can have a doctor or physical therapist, a pharmacist, a social worker, an aunt, an uncle, a daughter, a son. You know that your team can be made of a variety of people you know, within your your family, but also within the community, that there are other resources out there that you can call upon. And then the resources within the state of Connecticut, for example, that you can call on. The Area Agencies on Aging, for example, have all kinds of resources and things that you can call upon for help. So letting people know in one place, here are the things that are available for you. Boy, I would have loved to have seen that 20 years ago myself, but you know, just knowing Okay, there are places to go you can you're at a starting point. Not sure where this journey is taking you, but there are steps to point you in the right direction. And yeah, it can be hard, it can be rewarding, but you you can get through it if you ask for some help and you take a little time for yourself. It's important for you to be refreshed when caring for someone, because they're going to pick up on your being a little short or, you know, overwhelmed with what that's going on, you need to be good for them as well.

Nancy Barrow: 17:14

It's interesting, the AARP is very in line with the mission of caregiving at Connecticut Paid Leave, and we found that the majority of people taking care of a loved one and have applied for benefits, predominantly women, 3360 women and about 1800 men have applied for caregiver leave. Have you found that sort of with the ARP, that it really traditionally is much more female focused, women really are the caregivers?

Barbara Monck: 17:43

I think in general, that is true. But through my volunteer work with AARP, I've also seen men who were in that role and talk about it, and you know, realizing that they, too had some struggles along the way, that it can really happen to all of us. It's just, you know, within our society, it's usually women who do pick up those particular roles.

Anna Doroghazi: 18:08

Also, you know, to piggyback a little bit on what Barrow just said. I think, you know, even though it can be difficult for men and women to embrace that caregiver label and think of this as, you know, a role that they're filling, instead of just, you know, this is an extension of, you know, being a partner, being a child, being a sibling. But I think in some ways, there are barriers for men to embrace that role. And, you know, I've talked to, you know, men who have been caregivers through my work with AARP, and they've said, you know, I don't, I don't see myself in in that label. I don't see myself as, you know, being a caregiver. I see myself as the person who, you know, takes my wife to doctor's appointments. And, you know, I think it's important to to be expansive enough with the conversation that, you know, men can see their value in this space too. Yeah, you know, because they're also contributing that economic value. They're also, you know, sometimes we call this, you know, it's hard work and hard work, and men, men are contributing that that also, and that's just tremendous, and they need just as much support as the women who are doing this work.

Nancy Barrow: 19:27

They sure do. And one of the important features that I love about Connecticut Paid Leave is the definition of family member. Like a family member could mean a spouse, sibling, daughter or son, grandparent, grandchild, but they also involve by blood or affinity, and the affinity is the close association to the person who is the equivalent of a family member, could be a godparent or an aunt and an uncle or even a family friend or a partner you're living with, but not married to. I love that definition of family and caregiver, do you have sort of the same definition of that in at the AARP of what a caregiver is? Because it's certainly changed. You know, families have changed.

Anna Doroghazi: 20:12

Yeah, that's been sort of an interesting thing for us to, you know, grapple with and shift over, over the last few years. Because I think, you know, we used to just talk about family caregivers, and now we, I think we're trying to be better about cave adding that to say family means a lot of different things to a lot of different people. Some people's, you know, biological families are not, not the ones who show up for them. Some people embrace the idea of chosen family. But anybody can be a caregiver for anyone else. And I think there's so many relationships that are important and really hard to define. You know, blood relation is not the only thing that puts us in a position to support the people that we care about. So, you know, AARP was really excited to support that expansive definition of family, because we know, you know, especially back to this idea of changing demographics. We need our whole village to be able to step in to care for us, and we need to be able to provide that care, especially even with blood relatives, not necessarily living in the same town, right anymore. You know, for those more physical day to day caregiving tasks, you might not be able to rely on, you know, a child or a sibling or a blood relation, but you know, in their absence, you might have a really tremendous neighbor, or you might have, you know, a co worker who's exceptionally close to you. And we, we have to value those relationships.

Nancy Barrow: 21:56

Do you think the pandemic changed attitudes about the need for workplace flexibility.

Anna Doroghazi: 22:01

I think so absolutely. I think, you know, as as a parent of young children who, you know, in March of 2020, suddenly found myself, you know, without the childcare I was so used to I, you know, I think what it does, is it, what the pandemic has done is really made visible so much of what we took for granted in terms of who's caring for our children, who's caring for our loved ones of any Age. And you know this, I think there's this interesting shift where everyone saw the value of care providers once they weren't there, and once they were trying to juggle all of those responsibilities at once. I mean, I I remember texting friends in March of 2020 like we should be paying daycare workers, like, a million dollars an hour, like, I have no idea how you know they've been getting through their days. And you know, we saw, we saw the value in a new way. And I think, you know, my hope is that we continue to, you know, be, you know, I hope in 2030 we're as appreciative of health care workers, child care workers, teachers and nursing homes as you were, yeah, you know, as we were in the early days of the pandemic, when their value came into such clear focus.

Nancy Barrow: 23:37

Yeah, I think nursing Homes certainly were put in to to the forefront and how serious it was and how needed these these workers were, and there's a real shortage of workers now.

Anna Doroghazi: 23:52

Yeah, there is absolutely and that makes, you know, policies like paid family and medical leave more important than ever, because in the absence of that paid workforce, we see family caregivers needing to step up more and needing to take on more. Yeah, we, we need to keep all this in mind moving forward around. You know, how else do we? You know, one rebuild that long term, you know, the formal, paid, long term care workforce, because that's just incredibly important, and become more so moving forward. But also, you know, as we're doing that, what else can we do in addition to, you know, paid family and medical leave, what else can we do to support those family caregivers who are filling in a lot of gaps.

Nancy Barrow: 24:43

Yeah well, we can give them up to 12 weeks of paid leave, which is wonderful, and they don't have to take in this, yeah, then they don't have to take it all at once, which I think, you know, Barbara, to your point, like taking people, you know, to doctor's appointments that could be a day off and and you don't have to take it all at once, you know. There's intermittent leave, there's reduced, you know, schedule leave. So I think the one good thing about Connecticut Paid Leave is the flexibility for caregivers.

Anna Doroghazi: 25:13

Yeah, absolutely. And that was one of the one of the provisions of the bill when it passed, that AARP, you know, really tried to go to bat for was this idea of intermittent leave. I think, you know, nationally, a lot of the conversation around paid family and medical leave has, you know, for very, very good and very important reasons, been focused on maternity leave and paternity leave. And you know that tends to that structure of, you know, 10 to 12 weeks, sort of all at once for, you know, for the the physical recovery and for the bonding. That makes sense. But I think Barrow story illustrates really nicely why we need more flexibility for family caregivers who might have, you know, a doctor, doctor appointment here or there. But without that flexibility, things can fall apart really fast.

Barbara Monck: 26:06

A few years ago, AARP sent a few of us up to Boston for the Federal Reserve. They were having a program on paid family and medical leave, and there were studies from both the Brookings Institution and the Heritage Foundation, who both came to the same conclusion that it really is an employer's best interest to be able to have paid family and medical leave so that their employees can be more static, that there aren't all these turnovers because people had to leave because they had to take care of families and really embracing it as you know, it's really better for us in the long run to have it. That was really nice to see that two very different points of view came to the same conclusion.

Anna Doroghazi: 26:51

I remember sitting in a hearing room watching Barbara present her testimony, and you really speak from the heart about her personal story. And I remember just tearing up and being like, oh my gosh, like this, this is real. This is what it means to people. And I hope you know legislators are, you know, as moved as I am by understanding what this policy means in the day to day lives of Connecticut caregivers.

Barbara Monck: 27:16

I'd love to tell a story about that testimony we got there, you know, pretty early in the morning. You know, we knew the hearing was going to take place, and time was going on throughout the day, when went through lunch, went through the afternoon, and it started towards evening, and it was, oh my gosh, I don't have my medication with me, so I had to call my daughter to come up to bring me the medication. So during the hearing, you know, she came in and gave me the medication, and it was like, Okay, I'm selfish. I'm going to need my daughter to be able to take care of me as I age. And it got a few chuckles, because it was a very real example of how caregiving can happen at any age, at any stage.

Nancy Barrow: 28:03

Were you nervous the first time you went to testify? Because had you done that before? Because that work is very intimidating if you don't know people.

Barbara Monck: 28:10

And it was, I think, my second time testifying on that issue. I think I first testified in 2017 did again 2019 so by that point, I was getting a little bit more used to it, but it is overwhelming, because you're you're sitting with all of these people looking at you, you might be filmed as well, and you really are. Are a little bit nervous about what it what is going to go on, but I was so passionate about the topic that right, I wasn't going to go home to take my medication because I want to make sure I was able to testify. And I'm sure that happened by calling my daughter and making her, you know, go find my medication and bring it up to Hartford. So that's that just tells you how important it was to me and to so many others to make sure that law got passed.

Nancy Barrow: 29:02

Barbara, I wanted to ask you, before we close this out, about what you've learned as a volunteer for the AARP and and doing what you do with the caregiving road show.

Barbara Monck: 29:15

Well, it's funny because I actually went to a caregiving event, oh, a month or so before my husband died, so I knew it was something that AARP offered, and it's just sort of planted a seed in my head that Jay this is something maybe I can do later on. What I like so much was the team approach to doing our work, that we have so many stories from our volunteers, that really educates all of us. Every time I listen to a program, I I hear something new that I can take home with me and take advantage of or to share with others. So it has been, you know, that community that comes together, you know, to care for others and. How that just is a springboard, you know, from for more things to do, because you see caregiving is going on, and we give these workshops. But we also are very concerned about our livable communities. We want people to be able to care for themselves in their home and have resources available for them throughout the community that they can participate and be part of the community that they're in. One of the great partnerships has been Age Friendly universities here in the state of Connecticut, that AARP has fostered, and those programs just have led to so much, you know, enjoyment and learning about new things and realizing that, yeah, I can go out there and be active and do things. Quinnipiac University has started a walking program for older folks that uses their facilities in the wintertime to be able to get your steps in indoors and not out in the cold. And they've just opened up a pathway on their North Haven campus where people can walk and get their steps in in a safe environment. So what I've learned is that it's just a springboard for everything else, and that there's a great community out there those fellow volunteers. I don't think I would have been able to survive the pandemic without having that, that team that we now had to shift focus and do what we used to do in person, in a virtual environment, and just seeing how people step up and make it happen. It's just very, very rewarding. It's been a great volunteer experience.

Nancy Barrow: 31:34

Well, I think it's amazing that you are a volunteer and you do so much this is a really a full time job for you.

Barbara Monck: 31:43

Barbara, well, it fills it, you know, definitely fills my life. I mean, when I I retired, my husband had just died a couple of years before, or a couple couple weeks before, and I had to find ways to fill my time after over a decade of caregiving, those personal relationships kind of went by the wayside because you didn't have time to go hang out with your girlfriends, or being able to sustain other activities because your your plate was already full. So as I retired, I had to find things to fill my plate to keep myself busy as well. So it was a wonderful opportunity for me.

Anna Doroghazi: 32:25

We love our volunteers. I can't say that enough. They're just the backbone of everything we do, and they're all, you know, all to a number just phenomenal people, and we are so thrilled to have them well.

Nancy Barrow: 32:38

And thank you so much for your support of Connecticut Paid Leave. We need partners like you and people like Barbara and people like you Anna, who really see the value of what it can do to families and caregivers and and how we don't make people have to choose between the person you love and your job. Yeah.

Anna Doroghazi: 32:57

Yeah well, thank you for everything that you do the you know, the Paid Family and Medical Leave Insurance Authority is so important, and you're all just doing tremendous work. You stood up such a huge program so quickly, and it's very, very impressive. And thanks, thanks for everything you do.

Nancy Barrow: 33:14

Well. Thank you both for being on the podcast and to find out more information or to apply for benefits today, please go to ctpaidleave.org This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.