Summary
Nicole Jorwic, Chief of Advocacy and Campaigns at Caring Across Generations, about the future of caregiving. We discuss the importance of intergenerational relationships and the inadequate support infrastructure for family caregivers. They also explore potential innovations and caregiving models, as well as federal and state level changes that could improve the quality of life for family caregivers. Nicole emphasizes the need for collective support and the equal sharing of caregiving responsibilities. She also highlights the importance of self-care for family caregivers to avoid burnout. Overall, strengthening intergenerational relationships and support structures can transform the future of caregiving and lead to better outcomes.
Takeaways
- Intergenerational relationships are crucial in caregiving, as they provide unique opportunities for connection and learning.
- Over 50 million Americans are unpaid family caregivers, yet the support infrastructure and services are still inadequate.
- Innovations in technology, benefits, and training can greatly improve the lives of both paid and unpaid family caregivers.
- Federal and state level changes, such as implementing a minimum wage for caregivers, can have a significant impact on improving the quality of life for family caregivers.
- Reshaping attitudes and promoting collective support can help in sharing caregiving responsibilities more equally.
- Self-care is essential for family caregivers to avoid burnout and maintain their own health and well-being.
- Promoting positive intergenerational engagement and community cohesion can lead to better caregiving outcomes.
- Advocacy and raising awareness about the broken caregiving system are crucial in driving change and improving support for family caregivers.
Chapters
00:00 Intergenerational Relationships and Caregiving
01:59 Inadequate Support Infrastructure for Caregivers
03:59 Innovations and Caregiving Models
06:12 Federal and State Level Changes for Caregivers
07:31 Reshaping Attitudes and Support for Caregiving Responsibility
10:19 Federal and State Level Changes for Caregivers
14:36 Advice for Family Caregivers
19:02 Self-Care Tips for Caregivers
22:14 Strengthening Intergenerational Relationships in Caregiving
Transcript
Nirvana Tari (00:00)
Hello and good day, lovely listeners. My name is Nirvana and today I will be your host for this episode of Future of Caregiving. I am joined by the lovely Nicole Jorwic, who is the Chief of Advocacy and Campaigns at Caring Across Generations, a movement of caregivers and care recipients working to better care systems so everyone can live, work and age with dignity. That's such a beautiful little statement that you guys have. I really love that. How are you doing today, Nicole?
Nicole Jorwic (00:27)
I'm doing great. Thank you Nirvana. Yeah, our mission, the mission of the organization was really what called me to the work and it is really what drives all of the teams at our organization.
Nirvana Tari (00:39)
That's amazing, that's really beautiful. And I just love how focused you all are on intergenerational relationships and the importance of that. Because here at Caryaiya, that's something that we really try to achieve and foster those intergenerational relationships by connecting college-aged students with elders within the community who are looking for care. And it's so interesting because when else does a 20, 21-year-old college student get to interact with someone who is four or five generations away from them that's not their grandparent. So it's really beautiful to see people from different walks of life coming together to and it's just it just brings me a lot of joy. So I love I love I'm already excited for this episode. So
Nicole Jorwic (01:24)
Yeah, there's real power in intergenerational care, I think.
Nirvana Tari (01:28)
Absolutely, 100%. So this is an alarming statistic that maybe not many people know, but over 50 million Americans, which is about one in six Americans, are unpaid family caregivers right now. So why do you think that the support infrastructure and services are still so inadequate when this many people are doing this as basically their full-time job?
Nicole Jorwic (01:55)
Yeah, well the fact that there are 53 million family caregivers who are doing this work is frankly a result of the lack of an infrastructure and a lack of a system of support for care recipients. So, of course, being a family caregiver and being a caregiver generally, whether paid or unpaid is a great honor. But the reality is, is that it only has to be this way because we don't have a system of support. I myself am a family caregiver. I've provided direct care to my grandmother who has Parkinson's and is 90 years old. And it was, it was a great honor to be able to spend a month out of a full year, one month out of a full year when I was providing direct care to her, helping her with personal care and other things after back surgery, but it never escaped me that I shouldn't have been the one doing it. Um, and the, that is because we have not invested in long-term care system that is reflective of what care recipients need and what family caregivers need. We know that 90% of older adults want to be able to age in place in their homes and communities, and that's just not the system that exists. So in order for that to happen, there is this over-reliance on unpaid family caregivers, and that's great. And again, we all will step in, but it's a huge also privilege to be able to step in. Not everyone can do that because of their lifestyle itself.
Nirvana Tari (03:15)
Absolutely.
Nicole Jorwic (03:19)
in the background.
Nirvana Tari (03:20)
100% yeah, I love that you said that it's a privilege to be able to care for your for your loved one because many people don't have that opportunity. Many people aren't able to take the time off of work, aren't able to step away from their other life duties. So it's yeah, it's definitely something that is kind of overlooked. Do you have any thoughts or ideas on potential innovations or caregiving models? Technology, benefits, training, anything that you could see that the care system like bringing in the next five to ten years to better the lives of both paid family care paid caregivers and unpaid family caregivers.
Nicole Jorwic (03:56)
Yes, so I think that we are in this. a moment of innovation. And I think a lot of that is because a lot of people are waking up to what isn't, right? So many people think that Medicare is gonna have them covered for their long-term care needs. They get to that age or they get to a care crisis and they realize that Medicare only covers a short-term rehabilitation stay. And I think the more that people realize that, it can radicalize them, not in some wild political sense, but just say, wait, we should have a fix for that. And so I think that some of that energy some innovations in the next five years, but also hopefully lead to deeper investment. In terms of technology, I think obviously that there are really valuable tools when it comes to remote support, remote monitoring, that sort of thing, but it has to obviously be done with great fidelity and protection of privacy. I think that in terms of, and it can help maybe make sure that you don't need a direct care worker in every room, but you still need that workforce. You can't have a workforce that's completely replaced, obviously, advances will lead to greater independence for older adults, for disabled people, and ultimately for family caregivers to have peace of mind. Because I know as an example...
I were in where we are out of state caregivers for my grandparents who split their time between Florida and Wisconsin. They're both in their nineties. And if we had some sort of way to kind of like peek in, in a very respectful and way that was respecting their privacy, I think that would really help. And so I think that those advances are going to be incredibly helpful to individual family members, but also the system because it can take some of the pressure off because that direct the direct care for workforce is high turnover.
Nirvana Tari (05:38)
Yeah.
Nicole Jorwic (05:42)
rates, high vacancy rates.
And that's not going to be fixed by technology. The way that that's going to be fixed is by increased wages. And I think that that's also something that we are going to see in the next five years. I think the pandemic really shone a light on the importance of this workforce in a way that we're not going to be able to turn away from. And we're not going to allow folks to turn away from this workforce as traditionally women, traditionally women of color, historically women of color, and has been historically underfunded when we have national wages averaging around $12 an hour. So I think in the next five years,
Nirvana Tari (05:57)
Absolutely.
Nicole Jorwic (06:14)
we're going to see that change. Even in Georgia, as an example, a couple last week at a big event where they were working on increasing wages for direct care workers to $16 an hour, which we're really close in a state that doesn't have a ton of funding, that gives me hope. And what really gives me hope is those same legislators were saying, and now we need to get to 20. So I think that the increased wages is really going to help to build that human infrastructure that family caregivers need so that they have peace of mind for their loved ones.
Nirvana Tari (06:30)
Right? Yeah.
Absolutely. I mean, it's one of the only jobs where it takes a mental, emotional, and physical toll on you. Like you are putting your absolute all into that person that you're caring for. You said so many, so many little tidbits that I want to ask questions about, but first I know you touched on how caregiving duties often disproportionately fall on women. So how do you think that we can reshape attitudes and support so that caregiving responsibility is more equally shared?
Nicole Jorwic (07:13)
Yes, I mean, I think that some of it is frankly just exposing the reality and by exposing that I just mean the data and the information that really backs up the fact that we haven't really seen the shifts in...
Nirvana Tari (07:25)
Mmm.
Nicole Jorwic (07:27)
in making it more of an everybody issue that has happened in other areas. And so I think what we need to do, ultimately, how it starts, is the fact that we still, as a country, and this is something that Caring Across Generations is very focused on changing, is that we see care and the responsibilities of care as this individual responsibility instead of a collective responsibility that we all need to work towards change, it stays an individual responsibility, it stays an issue that is only impacting very specific groups of people who are currently doing the work, versus us exposing the reality of caregiving and the reality that so many folks are doing this, really focusing on the faces of care and all of the different shapes and forms it can take on. I think that we can change that. But I do think it is really interesting. I have a friend who was a primary caregiver for his mother who unfortunately passed away from early onset dementia. And him and I had some really interesting conversations because he is a male, but his family took on those same responsibilities. But also people in hospitals, in care facilities listened to him in a different way. So there's, I think, so many different gender dynamics that are at play. But I think the more that we can ultimately see this
Nirvana Tari (08:49)
Yeah.
Nicole Jorwic (08:54)
as an issue that needs everybody, it will be seen as less of a women's issue, quote unquote, or something that is the responsibility of the women of the family.
Nirvana Tari (09:01)
Absolutely.
Yeah, and I mean I love that you brought in like the collectivism versus individualistic like side of like culture as well Just because I feel like the western world has been has gone so far to the independent side of things that we all oftentimes forget that as humans we are social collectivist creatures that are supposed to be together and we are supposed to Have villages to support us and help us through these things. So yeah, I think that's a wonderful thing to touch on for sure.
Previous thing as well, I still wanted to ask you a question about just like, because you know, I know that you have a wealth of policy experience, so I'm wondering like what federal and state level changes would have the biggest impact in improving quality of life for family caregivers? Do you think that it's just like raising, like having like a minimum wage for caregivers? Like what thoughts and ideas do you have on that topic?
Nicole Jorwic (10:00)
Sure, it's pretty much all I think about, so I'm happy to talk about it. I mean, the reality of the situation is that the best way to support family caregivers is, as I've said before, to have that system of support, that care infrastructure that we call it, because that's going to be the biggest thing to support family caregivers. Of course, there are policy solutions like paying family caregivers to be trained on supports, having family caregivers be paid caregivers, if that's the fan in that in each individual family, if that's the thing that makes the most sense. Respite care, there's a lot of those policies that should be continued to expand, should continue to expand across the country and also be expanded in states where they already exist. But the reality is, is that we have to take a step back and really look at the long-term care system that isn't in this country. And I talked about the fact that already that Medicare does not cover long-term care outside of a very small home health benefit where you have to have a really high level of need reaching institutional level of care. It's a very underutilized benefit or a 90-day rehabilitation stay. And so the only other federal program that funds long-term care and the main funder for long-term care in this country at over 50 percent is Medicaid. And Medicaid is a really complicated system. It's something, it's something that I'm lucky to be an expert in and I'm, I still can find complicated and it is a system that is funded. Medicare is only federal funding.
Medicaid is both federal funding and state funding, which can make it really complicated because in order to invest, you need both state legislators, legislatures to say, we need to invest this money because the state legislatures make that investment and then it gets matched at the federal level. And so it requires both state level advocacy and federal advocacy to get big investments. But because states haven't really done that, and anytime you see a financial downturn or other problems with finances in the state, first thing that gets cut is human service budgets, that we really are at a point as a country where we need to see major federal investments in programs like Medicaid to shore them up because Medicaid has a almost 700,000 person waiting list and that's only for people who know that there's a waiting list to be on. And Medicaid also has very very strict financial eligibility requirements. So people, aging adults who realize that Medicare isn't going to have them covered, then they might go to Medicaid and realize that they're going to have to spend down all of their assets, get rid of things that they might have wanted to hold to pass down to their next generation in order to receive the supports and services that they need to stay home.
And so really what we need to see is there's not a private sector solution. Private insurance has not picked up. Only about 11% of people have private long-term care insurance. It's very, it's always on very minimal benefit. And so really what we need to see is a creation of a either LT long-term care, LT or long-term support and services or LTSS benefit in Medicare, and also an expansion of funding for Medicaid. That's really the way that we're going to fix the long-term
Nicole Jorwic (13:21)
care problem in this country so that when a family caregiver is you know googling at 2 in the morning because their parent fell and is no longer to be able to stay that they're not going to have to wait they're not going to have to do it themselves but that there is a system in place
Nirvana Tari (13:33)
Yeah.
Right. I have to ask, do you have a little Medicaid poster behind you?
Nicole Jorwic (13:42)
It says Medicaid equals life in the community. Yeah, I do.
Nirvana Tari (13:47)
I fully believe you. This is all you think about now. That's awesome. Yeah. Sort of on that similar note, what advice would you give to a family who's just beginning their caregiving journey to set themselves up for success and maintaining first their own health and also the health of their loved one, getting adequate support and finding joy along the way?
Nicole Jorwic (14:15)
That's a great question. I think that the main advice that I would have for family and caregivers is that you're not alone.
It can feel like it's a very lonely process and that it's not something that anybody else has faced, but sadly I can share that it's something that millions of families are facing around kitchen tables and late night phone calls all over the country. And there are places obviously like Caring Across Generations and other places where you can get this get information you need and organized to be part of the change to make a better system for all of our loved ones. I would also say that there are obviously a lot of great resources out there and the best thing that, and also to make sure that family, family caregivers know that the only thing that matters is the right decisions for your family member.
And to be open about it. I think that part of why we are still stuck in the individualistic nature of care and not seeking collective solutions is because so many family caregivers kind of go into a turtle shell when they're dealing with it. And I understand, because I've been there. It's all you can focus on is the next best step. But the reality is that the more that we can.
Nicole Jorwic (15:28)
break out of that and see that, you know, ask for help. And also when you're not in a direct acute moment of care, make sure that you're offering to jump in for folks that you know are going through it as well. Because I know that saying asking for help sounds really simple and frankly, what's been easier for me when I've been in care situations is the family member who comes over and has a basket to put in your grandpa's room so that the nurses have snacks so that they come in his room. Like those are the types of things that we should all be doing for each other. But make that list, have that list of things that you can say, look, you know what, I really need to go for a walk today, can you come over for an hour? It's okay to ask for those things, that doesn't mean that you're not handling it all, that means you are handling it all because you're also taking care of yourself.
Nirvana Tari (16:01)
Yeah.
I just recently spoke with someone and they said that there was a family caregiver as well and she said that the thing that brought her to tears and just like made her absolutely break down and realize that she had been not prioritizing herself in any way shape or form was when somebody asked her and genuinely was like, wait, how are you doing? Like how is your mental health? Like are you taking care of yourself? Have you gone to your doctor's appointments? Because like how are you supposed to care for someone if you are not in the position to do that, if you're not taking great care of yourself, you're not gonna be able to, you can't pour from an empty cup. So yeah, it's really important for everyone to sort of understand and realize that it's okay to pick yourself first because that's how you can, that's the best that you, that way you can be the best version of yourself that you're taking care of.
So, Nicole, we know that caregiving can be really, really immensely draining emotionally and physically. So do you have any self-care tips for family caregivers to avoid burnout?
Nicole Jorwic (17:26)
Yes, I mean, the first thing I would say is be gentle because burnout is going to happen and you can't be hard on yourself when that does happen. The biggest thing for me, where I've been successful in what I would suggest to other people is to really build routines wherever you can. And that's routines obviously with the person that you're caring for because that can also assist them, but making sure that you're carving out that really specific time to do things that bring you joy.
If it's spending a half hour on a walk on a nature path, for me, it's my spin class of four or five days a week. And make sure that those times are really sacred, that those are just as important as your family member's doctor's appointment with their next specialist, as your family member's therapies. That those are just as important because I think so often when you're in a caregiving situation, you're not thinking of yourself.
Nirvana Tari (18:24)
Yeah.
Nicole Jorwic (18:25)
as the same level of importance. And the reality is, is if you're not strong and sturdy, then the whole thing is gonna fall down. And so I think holding in those routines and always making sure that you have backup are really the pieces that I would say.
Nirvana Tari (18:32)
Absolutely.
Mm-hmm.
Absolutely, yeah, that's some great advice. You got to lay the foundation down right in order for the rest of it to be able to build up. So that's what my mom always tells me, but that's wonderful advice. I have one more last question for you and I want to bring it back to the intergenerational relationships a little bit. So like we were talking about earlier, caregiving really can facilitate meaningful intergenerational relationships and connections across generations.
Nicole Jorwic (18:52)
Exactly.
Nirvana Tari (19:12)
So, what is your vision for how strengthening general intergenerational relationships and support structures could transform the future of caregiving? How can promoting more positive intergenerational engagement and community cohesion lead to better caregiving outcomes? I know that's a mouthful, but...
Nicole Jorwic (19:34)
Yeah, no, I mean, for me, I actually have on my wall something that says there's a transcendent power in a strong intergenerational family. And then it goes on about the importance of intergenerational relationships. And I think that obviously also, this is specifically about family, but it's true for all care. And obviously very often it's family caregivers, but not always.
And I think that the reality is that it's important to have intergenerational care because it does create those really those, you know, of course, beautiful moments of learning more about somebody, whether it's someone you know, or someone you don't about their history and what made them the person that is sitting in front of you or standing in front of you that day. But I also think it's about.
exposing younger generations to the reality of the lack of supports that are out there is also really extremely powerful. It can be hard for, you know, I'll just use my mama as an example, a woman in her 60s who's doing a lot of direct caregiving to be the one, like out on the streets, fighting for change. But if you can have that person, that college student in the case of Karyaya, who has been working in the system, realizes the low pay, realizes the beauty of and give those folks and saying, hey, this isn't right. We should be fighting for change. That also is a power, right? And so that is something that we really think about at Caring Across Generations is how do you build those intergenerational moments, not just so that the people that we know need care have the care that they need, which is of course the immediate need, but also so that we're making sure that other people see the cracks in the system before they're stuck in the cracks. And I think that that's really important as well.
Nirvana Tari (21:09)
Yeah, that's yeah, that is so beautifully well said. I mean, like, there's, if people aren't advocacy is like the best way to get to the root of an issue. And if people don't know that there is an issue to be dealt with, and how are they going to go fight it? Like me myself, I had no idea how broken the caregiving system was before I joined Carrie I had like I had absolutely no clue. I hopped on the platform as a student. When I was
Nicole Jorwic (21:39)
Yeah.
Nirvana Tari (21:44)
I was pre-med and I was hoping to get some direct patient care experience in order to apply for medical school. And I
Nicole Jorwic (21:46)
Thank you.
Nirvana Tari (21:52)
sort of got way more involved with the company and realized dang this is a very broken system and let me try and see what I can do to try and help and make a couple of people's lives a little bit easier at the very least. So yeah it's it I had and this is like a little bit of a personal story but it was my I got to interact and take care of a 98 year old man who was a World War II veteran.
Nicole Jorwic (22:07)
Yeah.
Nirvana Tari (22:22)
so beautiful to kind of learn about life through his lens and talk about life based off of what he had experienced and it was something that I would have never ever had the opportunity to have and engage with. And these are memories that I will cherish obviously for the rest of my life. We just celebrated his 98th birthday and I was invited to his house and his family like had me over and we had cake and everything. And it's just so beautiful to see that like I can have a 98 year old friend and that's completely normal. And everybody should go get themselves an 80 plus year old friend because
Nicole Jorwic (22:42)
and
Nirvana Tari (22:59)
They're awesome and they've got a lot to teach but It was so very lovely getting to chat with you and talk with you Do you have any closing thoughts anything else you would like to share with our listeners?
Nicole Jorwic (23:03)
Yeah.
I think the biggest thing that I'd want to share and also just something that we really think about a lot at Caring Across Generations, it actually came out of a call that I was having with our executive director when I was driving to Chicago to drop off my dog so that I could fly with my grandparents. And I was very frustrated. Again, it's a common situation for many family caregivers. I was trying to help my brother. I have a brother with autism and all the different things. And I said, I was talking to Ai-jen and I said. I'm a quote unquote national expert and I can't figure this out and we all have this in common. And so we really talk about the fact that we all have care in common, whether it's an immediate need or it's something that we know is kind of out there. It's something that we really need to tap into because it's something that is a universal experience but is so often behind closed doors. So I think the more that we can all realize that this is a common experience, the more that we can work on creating universal access and other things.
Everybody has what they need.
Nirvana Tari (24:20)
100% I feel like it's almost stigmatized. So yeah, definitely you got to do a lot of work to try and remove that But really lovely getting to know you and chat with you Thank you so much for taking the time and we wish you the best of luck on your caregiving journey Keep doing the amazing work that you're doing
Nicole Jorwic (24:23)
Thanks.
Thank you, you too.