So it's been 10 years and nine months. My mom was diagnosed in 2014 with early onset Alzheimer's disease. She was 66 years old and I was 26 years old.

I was beginning to build my career living in Dallas, Texas while she was in Virginia. Right. And so my peers were not talking about caregiving. My peers were not talking about Alzheimer's or any form of dementia.

And so I felt so alone, so isolated while I was navigating, traveling back and forth every few weeks for doctor's appointments, meal prep. And then I moved back home in 2019 because my mom's disease progressed and it was time for me to be present with her.

And my mom is now fast forward 10 years, fully bed bound, no longer ambulatory, no longer verbal and fully dependent on me for everything. This journey has illuminated my eyes to the realities of dementia, the realities of care, the realities of having to navigate the healthcare system without knowing what questions to ask, who to go to for what, what should I expect on this journey, right?

And so I started sharing my journey because at 26, I didn't see people who looked like me talking about care, right? Hey everyone, this is Jonathan Marks.

Welcome back to another show. We hope you're doing well today. This show is a continuation of a topic we've covered before, which is the crisis in family home caregiving.

40 million Americans are currently caring for somebody at home. Why? Because we have an aging population who needs more help. There's more dementia, there's a shortage of professional home care workers, and a significant number can be low quality.

It's really tough to find affordable quality health care for someone in the home. Listen to this show, please, because you may not have someone who's sick in your home now, but it may happen in the future and your life can totally change, as you will hear from our two guests.

Caregiving is the name of a new documentary for PBS from Lee Pictures, Arc Media, and WETA, with award-winning actor Bradley Cooper serving as the executive producer.

The documentary explores the state and the high stakes of care in America today through the stories of a diverse group of caregivers including Bradley Cooper's own experience caring for his father.

The film examines caregiving from multiple perspectives, the creation and evolution of the care system, the social dynamics that shape our current approach, and the interpersonal and economic pressures faced by caregivers.

As the shrinking health care workforce and a rising prevalence of dementia put more pressure on family caregivers, the need for a consistent and reliable standard of support has never been more urgent.

The documentary will premiere on PBS on June 24th and is currently available to stream on pbs.org and the PBS app. We have two guests with us today. Jessica Guthrie is a family caregiver for her mother who was diagnosed with Alzheimer's disease in 2014. Jessica moved home to become her mother's caregiver at the age of 26 and sacrificed her life and career in Dallas over the past 10 years to become a full-time caregiver.

Her large platform on social media allowed her to create a caregiver community that she lacked in real life and from which she has found important support.

Also with us today is Deborah Barrett, Vice President, Corporate Affairs at Otsuka Pharmaceuticals, where she is responsible for creating and advancing the overall strategy across government affairs and public policy.

Deborah has dedicated her career to protecting and advancing the rights of those whose voices need to be heard. If you want to learn more, you can visit otzka-us.com slash caregiver.

Let me spell that. That's O-T-S-U-K-A, otzka-us.com slash caregiver. So welcome to the show, Deborah and Jessica. How are you both today? Doing great.

Good. It's good to have you both here. So Debra, tell us about the documentary Caregiving and why Otsuka wants to bring so much attention to family caregivers.

We are so excited about this documentary. There are, as you know, about 45 million family caregivers in this country. So you know someone or they know someone or you yourself have been a caregiver.

And Otsuka is a health care company. First and foremost, we treat patients with chronic diseases. And caregivers are a critical part of the health care system.

They're part of their loved one's health care journey. They're a key determinant in terms of health outcomes. And so we really wanted to make sure that there was an opportunity to elevate their stories, help educate and understand and connect a community around caregivers.

I would also say that this is a really appropriate time. There was a study out last week, Columbia University that looked across the country at the state of caregiving and found that nearly half of our states are on the precipice of a caregiving crisis.

So the need is great. There's lots of reasons for that. But the time is now for us to be talking about this and figuring out what we can do. Yes, we did a show covering that Columbia University study.

Thank you for that. And what has motivated Otsuka for doing this documentary with Bradley Cooper? Yes. So we as I said, we are a health care company and it's hard to be a health care company or a company committed to.

to patient healthcare and not think about caregivers given the breath and the impact that they have in our healthcare system. We also treat patients with brain disease, kidney disease, serious mental illnesses, chronic diseases where you are gonna see the role of the caregiver.

And so it felt like just an important part of what we do if we are patient centered is to try to focus on and lift up these issues and advocate for some solutions.

Great. I'm so appreciative of this patient centeredness. So let me move to Jessica. Jessica, you made an incredible commitment to your mother. How long ago was it?

10 years ago when she fell ill and you gave up everything and moved to take care of her. You've been a full-time caregiver. And in addition to that, I guess you felt very alone and really wanted to create a community of caregivers to support you.

Can you tell us about the experience with your mom and then creating this community? Yeah, so it's been 10 years and nine months. My mom was diagnosed in 2014 with early onset Alzheimer's disease.

She was 66 years old and I was 26 years old. I was beginning to build my career living in Dallas, Texas while she was in Virginia, right? And so my peers were not talking about caregiving.

My peers were not talking about Alzheimer's or any form of dementia. And so I felt so alone, so isolated while I was navigating, traveling back and forth every few weeks for doctor's appointments, meal prep, And then I moved back home in 2019 because my mom's disease progressed and it was time for me to be present with her.

And so I started sharing my journey because at 26, I didn't see people who looked like me talking about care, right? And so sharing my story at first on social media was to find people to connect with, to feel affirmed, to feel seen.

And what that has turned into now is a global community of people who say, because of you, I don't feel so alone. Because of you, I know how to advocate.

We now feel connected and part of this broader caregiving community. That's so incredible. And if you don't mind my asking a personal question, what made you make that commitment to your mother?

I mean, here you are a young person just beginning your career. She's in a different part of the country. You've moved away. What was the commitment behind this that made you give up everything you were doing and go take care of her?

That's really incredible. You know, I was my mom's 39 year old surprise. She thought she was having the flu, but it was really me, right? And you know, we have been two peas in a pod.

She's a single mom. I'm an only child. And I watched my mom sacrifice and pour into me growing up to ensure that I had the best life possible. And so when it came time to take care of her, it was an easy yes, because that's, that's what I saw growing up.

Therefore the sacrifice, the intentionality, the care was deeply ingrained in me. God, that's just amazing. I take my hats off to you. It's incredible.

And the community that you've built for people who are doing something similar to what you're doing, Deborah, let me ask you with the, basically the shortage of support for family caregivers, what can corporate leaders do to better support family caregivers while they're in the workplace?

Because this must bring a tremendous conflict between being at work and trying to take care of somebody at home. Absolutely. I think corporate leaders have a really important role to play.

We know, as I said, that there are 45 million plus caregivers in this country. And so you know that as part of your employee base, that you are going to have lots of individuals who have this experience like Jessica.

And we need to figure out how to support them in the way that we support the health and well-being of our employees, whether you're looking at benefits or paid time off or training and education or creating a community, as Jessica was talking about.

I happen to work for a company, Otsuka, I'm really proud to say that offers a caregiver benefit, paid time off to do caregiving and has a caregiver navigator program, which is intended to be a resource for individuals.

I really think that's the kind of benefits that given the breadth of this issue, we want to see across places of employment. I would also just pitch that I think corporate leaders can be advocates right alongside caregivers in their communities, working with policymakers to try to figure out how to fill the gaps, financial assistance, logistical assistance, respite care.

What are the policies that would actually make the environment for Jessica and all of the caregivers as supportive as possible? Debra, you mentioned this caregiver navigator.

What does that person do? So it's a program that OTSCA offers to its employees. There's personalized care. So it sort of depends upon what your needs are as a caregiver, but there's information, there's education, there's resources.

Here's suggestions about where you can go and what you can do. It also creates a community as we've talked about. So it's a program that is available to us that we can use in individual personalized ways that can, I think, make the greatest difference.

Great. So let me give a couple of URLs that people can visit before I go on with questioning. The website where you can go to learn more from Otsuka is otsuka-us.com slash caregiver.

Did I get that right? You got it right. And I will just to make a finer point, uh, spell out Otsuka, O T S U K A, because sometimes it's, uh, it's pronounced differently than, than the way it looks.

Right. Otsuka-us.com slash caregiver. And we will put that on our website and Jessica, you have a website as well. Is that correct? I do. You can find me at jessicasika3.com.

You've been doing this for 10 years, Jessica. What are the challenges that you still face being a caregiver for your mom? And are you working? Do you have another job or is this full-time family caregiving?

Two great questions. So I have been a full-time caregiver and a full-time worker this entire journey. I am only the caregiver that I am because of the support that I received from my work environment to be able to work virtually, to be able to move back home, be able to fly back and forth with support from them.

And so I am someone who has benefited from a very well-resourced and thoughtful work environment. But with that being said, I left my job like many family caregivers in 2023 because the cost of care, but also the realities of my mom needing more attention from me.

And so I now work for myself just trying to make ends meet. But the greater benefit is that I'm now available for my mom and flexible as her disease has progressed.

And with that right I think that leads to the challenges I think the first is that the cost of care is astronomical right when we think about paying for caregivers to be there while you work full time or respite care or trying to make sure that your person gets the support that they deserve I think the second is that you know I like to say I have an honorary nursing degree Right, I've been doing critical care at home with my mom, navigating hospital discharges navigating you know how do we how do we work a Hoyer lift at home by myself, and too many caregivers are ill equipped and don't have the knowledge and tools to really support their people well.

And the last thing I'll say is that caregiving is hard and lonely. And too often at 2 a.m., no one is around or awake to understand what you're really going through.

And so the feeling of isolation, the feeling of not being connected and supported is really difficult for family caregivers. So as we conclude this interview, let me ask you a question, Jessica, if somebody is in a family where a parent or somebody in the family is just becoming ill and they're just beginning to need home care, what recommendations do you have for somebody just starting on this journey?

Cause I'm sure it develops over time with lots of surprises. There's so many surprises, especially on a dementia care journey. But the first thing I'll say is that if you're at the beginning of your journey, don't forget that your person is a human, that they still enjoy all the little things.

They still enjoy the moments that make them happy. And so don't treat them like a patient. They are still your person that deserves the experiences and the love and the joy that you would pour into them before a disease or diagnosis.

I think the second thing is to speak up. And even though you might not know the questions to ask, Say, I'm noticing things, I need support, right? Like sound the alarm so that people can show up for you and at least point you in the right direction.

And then finally, honestly, reach out and build your community early. You might not need help yet, but as soon as people know that there might be something wrong with a loved one, let them know that you might be calling on them so that you don't feel alone on this journey when things do get hard.

Boy, words spoken by an expert. Thank you for that. You've been through it all, and I really respect what you've done. And Deborah, tell us about the documentary that Bradley Cooper has produced.

What's in the documentary? Why should people watch it? Yes, well, first of all, it's an incredibly compelling piece with personal stories from caregivers woven in, including Bradley Cooper's own story as a caregiver for his father.

It includes a lot of history, some of the untold history of caregiving, and woven together really is a thought-provoking piece that asks the question, what more can we do given how widespread this is?

You listen to Jessica talk about her experience and and realize that, you know, we need to be doing something to provide support. So I think this film will help really energize and catalyze that kind of conversation.

I hope it will. Good. And people can watch this on PBS, I understand. PBS.org right now it is streaming on PBS.org and the PBS app. June 24th, we're looking forward to a big premiere on PBS itself.

And then, of course, we have our website, as we mentioned earlier, hopefully as a resource for folks. Great. Deborah, what final message would you like to leave for, let's say, employers?

Because it sounds really that's where you're trying to make a difference. What final message would you like to leave with employers about supporting home caregivers?

You, we have a role to play. This isn't optional. It is a reality of our employee base that so many of them are dealing with caregiving. And we need to be cognizant of that and thoughtful about that and think about in conjunction with caregivers themselves, where are the gaps?

What are their needs? What can we do that's most supportive? When Otsuka made this commitment to caregivers a couple years ago, we sat down with caregivers and said, where are the areas that we could be most helpful?

Is it creating community? Is it educating? Is it amplifying? There's a lot there and lots of different things you can do, but the doing is really important.

Fabulous. Thank you. Thank you both so much for being with us today. I really honor what each of you is doing in your own role. We've been talking with Jessica Guthrie.

She's a full-time caregiver for her mother who created a larger caregiver community on social media. You can find her at jessicacguthree.com. And we've been talking also with Deborah Barrett.

She's the Vice President, Corporate Affairs at OZCA, where she has dedicated her career to protecting and advancing the rights of those whose voices need to be heard.

And you can learn more at ozca-us.com slash caregiver. This is Jonathan Marks with GoToHealth Media. We thank you for your support and your views. We've just hit 1.5 million downloads and we're growing 10,000 per day.

We're very happy with that and we thank you. We'll see you again next time. And remember, as we say at the end of every show, go to health. Take care.

We'll see you again. Bye bye. Thank you for tuning in today to Go To Health. You are one of almost 10,000 people per day who enjoy the evidence-based health information offered by our guest health experts.

You can watch us on our website and YouTube and listen to us on eight podcast networks. Be sure to join Jonathan Marks in our upcoming shows each week.

If you like our show, please share this episode with your friends and colleagues. You can subscribe to the show, join our email list, send us feedback, browse through the online store, and view our library of over 150 shows at gotohealthmedia.com.

See you next time and remember to elevate your life with GoToHealth.

Bradley Cooper is Concerned About This Healthcare Crisis

Jonathan Marx

Comments