Episode 213 — Caregiving

Coming up on this episode of Iowa Life, we'll explore the challenges and triumphs of caregiving in Iowa. Through three moving personal stories, we'll discuss the emotional, physical and financial realities faced by caregivers.

It's one of the most horrific parts of being a caregiver is taking away from them what makes them.

We'll hear from someone receiving care.

Yeah, that looks good.

And, we'll have a conversation with Kathy Good from the DeWolf Innovation Center.

Caregivers really don't know exactly how to identify their needs. What they know is they need things, but they don't know exactly what those needs are.

[Nebbe] It's all coming up next on Iowa Life.

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Funding for Iowa Life is provided by --

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The Pella Rolscreen Foundation is a proud supporter of Iowa PBS. Pella Windows and Doors strives to better our communities and build a better tomorrow.

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And by, the Lainie Grimm Fund for inclusive programming at the Iowa PBS Foundation.

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[Nebbe] Caregiving is something that touches all of us at some point in our lives, whether we are giving care or receiving it. And today, I'm here with Kathy Good who is the Senior Director of the Chris & Suzy DeWolf Innovation Center for Aging & Dementia of Mercy in Cedar Rapids. And, Kathy, caregiving brings with it so many challenges. Some of those challenges you won't know about until you're in the thick of things. So, give us a heads up. What are some of the real challenges that caregivers in Iowa face?

[Kathy Good] Well, when I talk with groups, I always say that caregivers really don't know exactly how to identify their needs. What they know is they need things. But they don't know exactly what those needs are. And often they feel overwhelmed because they don't know and they feel alone. So, the early challenges are trying to figure out what do I do, especially for caregivers of older adults. They're kind of dropped into caregiving. It isn't like you have preparation or training. So, one of the challenges is also finding like how do I know what to do whether it is somebody has been discharged from the hospital, how do I get in control of that? Or if somebody is living with dementia, how do I figure out how to assist them so that they have the best life possible? So, training is an issue. I think time is an issue, a challenge for caregivers. I used to feel as a caregiver for my husband that I did things in snippets of time because there were a lot of demands, I was still working. And so, often then caregivers are, because they are overburdened, they burn out. And that is another challenge of figuring out how to handle your own wellbeing as well as the wellbeing of the person for whom that you care.

[Nebbe] Well, so it can be exhausting. It can be isolating also. So, there can be mental health issues for the caregiver as well.

[Kathy Good] Well yes, and sometimes people have mental health issues before they ever become a caregiver, so then it's really complicated. Or it is that there is a high percentage of caregivers, particularly of adults, who then develop anxiety and depression on top of all of their other health problems that they might have. In my own case, I developed physical problems. So, I developed some problems with my eyes. I developed rheumatoid arthritis. And so, somebody would say, well how do you know that came from caregiving? And I used to say, well if you lived in my shoes, you would know that the stress, because of the kinds of health conditions that I developed were stress-related.

[Nebbe] And, of course, when you are a full-time caregiver, it can be really hard to find the time to get the care that you need.

[Kathy Good] Absolutely, because it's another time thing. Plus, it is like just getting that sort of organized into the pattern of your life is not easy. And sometimes, there are caregivers, particularly in Iowa, that don't have easy access to medical care or they can't afford it or they don't have the insurance. Either they don't have the insurance or the person that they are caring for doesn't have the insurance because maybe they lost their job. So, it's all about access and then navigating the system because the health system we all know is highly complex.

[Nebbe] And access can be particularly challenging for people in rural areas. And that goes for beginning of life care as well as end of life care. In fact, over the past few decades, Iowa communities have lost more than a quarter of their labor and delivery units at hospitals in rural areas. That leads to an increased risk for poor birth outcomes in part because of the distance mothers have to travel to get the care that they need. Best Care for Better Babies is a program designed to fill that gap.

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[Nebbe] As local maternity care fades from some rural areas, public health programs, including Osceola Community Health Services in Northwest Iowa, have implemented traveling nurse programs like Best Care for Better Babies, which have become essential in providing post-partum checkups, education and support, especially for first-time parents.

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[Amy Glade] Best Care for Better Babies is a longstanding program that started well over 25 years ago.

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[Amy Glade] It is a home visitation program where the nurses go into the home. We really monitor growth and development on baby, we make sure mom is doing well.

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[Alexa Dagel] Nothing can really prepare you for parenthood I feel like. I've grown up around children my entire life and I babysat as a teenager in high school and what not.

 

[Alexa Dagel] So, I was definitely a nervous first-time mom.

 

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Good morning. How are you guys doing?

Good.

[Alexa Dagel] No two home visits are ever the same.

Just going over different developmental milestones. Still requiring lots of cuddles.

[Alexa Dagel] We're nurses that go out into the home. So, we have been exposed to a lot. But I will say home visiting is not for the faint heart.

We're at 23 inches today.

[Alexa Dagel] You have to be ready to face any challenge in the home because you're there by yourself.

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[Jayda Hieronimus] Riley actually was diagnosed with reflux. And not knowing at the beginning what reflux really was in the baby, it was kind of scary for us. She was spitting up a lot, choking on it. It's something simple like Riley is very spitty today, what can I do? Or Riley is not eating as much, is this normal? Alexa is always here to like tell us that it is okay for things like that to happen instead of going all the way to Spirit Lake and hearing the same thing there.

 

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[Nebbe] Programs like this can help reduce ER visits, identify health risks sooner, and improve outcomes for both mothers and infants. And, for young mothers who may feel apprehensive or unprepared, the program offers much appreciated information and guidance.

Hey!

Hello, how are you?

Good. How are you?

Good.

[Autumn Dake] I was a little scared. Yeah. I didn't know how to tell my mom. I didn't -- yeah, it was just definitely not in the plan.

You can set her up there.

[Alexa Dagel] As a nurse, you see people on their worst days. And so, just trying to be a little bit of a positive light.

What did you say he was at the doctor?

I think he was nine pounds, 13 ounces.

Okay, sure, so scales might differ a little bit.

Yeah, yeah.

You're strong, Amara.

[Alexa Dagel] It's easier to build a rapport with people when they are more comfortable.

There you go, baby. Can I listen to your little heart?

[Alexa Dagel] Sometimes the mom puts on a good front when they come in, but they're really struggling and it's hard for them when they're out and about to show that. But a lot of times we can break down that barrier when they're in the home.

[Abbie Bos] I got pregnant with my first child my senior year of high school. And so, I was 18 at the time and I was not sure what I was getting myself into and I just needed that little bit of extra help.

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[Abbie Bos] I knew that it was going to be a huge step into a world that I don't think that I was ready for at the time. They a hundred percent were like no, we will take you step by step and we will hold your hand. And I think that is hundred percent kind of like the words and the courage that I needed at the time.

Peekaboo!

[Abbie Bos] They have been very fundamental in helping me and bringing me diapers in the times that I need and bringing me information when I need it and when I'm scared. Also, the social part about it, like if I need someone to talk to, I can just be like hey, can we chat? Like, I need someone. And they come in here and they just kind of help me out and chat with me so I don't feel so lonely and stuck in the house all the time.

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[Abbie Bos] They're here to see you and to check in on you and just to sit there with you and be there with you is definitely the experience that I think that all young mothers need.

[Alexa Dagel] Helping them gain that confidence really motivates me.

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Can I get a hug?

Oh yeah, thank you!

Aww, big girl!

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[Nebbe] Kathy, some of the big challenges to caregiving are kind of built into our modern culture and into how we live. Tell me about some of those challenges that can make caregiving so difficult.

[Kathy Good] Well, one of the first challenges I think is that oftentimes caregivers don't know they're caregivers. And so, they don't even know that there might be help available. An average caregiver is a female who is 49 who has parents and who has children at the other end, teenagers usually, trying to manage. But probably about 21 plus hours a week spent in caregiving. If you're a spousal caregiver I think it goes up to like 41 plus hours a week. So, it's very demanding in terms of your time. And then often caregiving is related to women. So, I had a brother when my parents needed care and I was the one, the first call that my parents made was to me, not to him. He was perfectly willing to help, but upon my direction. So, oftentimes we've seen here at the Caregiver Center and as a part of the Innovation Center probably three-quarters of the people that we're seeing are women and one-fourth are men in terms of caregiving. So, it reinforces some of that cultural thought about who is supposed to take care.

[Nebbe] Right. Who does the burden fall on?

[Kathy Good] Yes, to where does the burden fall? To whom? And there are those caregivers are daughters and often daughter-in-laws.

[Nebbe] So, here we are at the Innovation Center. What are some of the innovations, the solutions that we can use to make this work better?

[Kathy Good] Well, I would say that the first thing that we do here is that we conduct a lot of one-on-one visits because everybody's caregiving situation is very different. And so, we attempt to help caregivers determine what their needs are. So, we provide emotional support and then we help that caregiver tailor a program, connection to community resources or resources in our center.

[Nebbe] And now, we are going to meet one of the caregivers that you work with. Rosemary Appleby and her husband come to the Family Caregivers Center at the DeWolf Innovation Center. His need for care was the beginning of an emotional journey for their family.

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[Rosemary Appleby] Hunting, outdoors and grandkids. That's what he's all about, was all about. I'm Rosemary Appleby and I'm 76 years old. This is my husband John over here. And he is 81. We've been married 57 years. My mom gave us six months, but three grown daughters, seven grandkids. Kids are great helpers. They come visit all the time. I think they're all afraid of that time when they come and he's not going to know who they are. I don't know when I became a caregiver. I just kind of wafted my way into it. He's diabetic. He had open heart surgery in 1993. He has congestive heart failure. And I retired in December of 2015. Little did I know that he was already showing signs of Alzheimer’s. One of my first gut punches, we went fishing and he hadn't hooked the battery cables back on the boat motor and he couldn't figure out where they went. And this is a guy who has spent hours and days in the back yard with his brothers tearing cars apart and putting them back together. And that was just horrible for me. I'm very blessed. He doesn't want to drive because so many spouses struggle with having to take the keys away. It's one of the most horrific parts of being a caregiver is taking away from them what makes them. You've got to do the best you can with what you've got. And I pray a lot. And I depend on others. I'm getting better at it. I was not very good at it at first. I do remember the psychologist that gave us the diagnosis and she gave me a packet of information from the Caregivers and said, you really need to talk to these people. They'll give you insight, they'll give you support. I could not have done this without them.

[Woman from Caregivers Center] So, this is the Caregiver Bill of Rights. I have the right to take care of myself. Caregiving is not an act of selfishness. It will give me the capability of taking better care of my loved one. To seek help from others, even though my loved one may object.

[Carole Butz] The dementia journey is a difficult one, particularly for caregivers. My own husband had dementia and my experience out of that is that it takes a village. Support is just critical.

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[Rosemary Appleby] Caregivers all have different things that they are good at, they can handle, they can't handle. I don't have a bathroom problem. I don't like mud. I don't like gnats. But I can help clean up. And I always tell them, hey, don't pin a halo on my head because it's just the way it is for me.

[Carole Butz] Don't try to do it alone. Find resources. If you need a counselor, find a counselor. If you need medication, find medication. Find someone that you can talk to, that you can share the journey with.

[Rosemary Appleby] We just went to a wedding. One of our granddaughters got married. I really worried since we were in the hospital in '23, everything has been like oh my God, I hope he's still here. But we went and he danced with the bride because three people were holding him up. He had a ball and didn't even know it. And that's so sad. But everybody else knew it. And there were a lot of tears, but they were kind of happy sad tears.

[Nebbe] Since recording the Appleby's story, John Appleby passed away. Our hearts go out to his close family and friends.

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[Nebbe] Caregiving can be a stressful experience. For many, it's also a lonely experience. On top of that, it can be significant financial burden. What are some of the financial challenges you've seen people deal with?

[Kathy Good] Well, oftentimes caregivers because of it's so stressful and there's so much to do, oftentimes if they are working, they have to reduce their hours or sometimes people even end up having to quit their jobs because there's not flexibility in their workplace. And so, not only then does that reduce their income, which is significant, but it also reduces their contributions to Social Security, so it has long-term ramifications in terms of their retirement. Oftentimes, caregivers need to remodel their houses or they need to, adult children are helping pay for remodeling a house for their parents so that there is a bathroom on one level. And so, all of that is very costly. Plus, caregivers are often spending their own money, especially adult children, to make things, copays for drugs, copays for medical appointments, paying for transportation. The costs of caregiving are endless. And in terms of even spousal caregivers, I know that when Dave was diagnosed, the very fact that he had to quit his job, he had to take early retirement. He was diagnosed at age 56. And so, that halved our income. We were fortunate because we had some financial resources. But most people if the person who is needing care has to quit their job and then especially if the caregiver has to quit their job, I mean, living in poverty becomes something that is just inevitable.

[Nebbe] And, you don't know how long caregiving is going to last.

[Kathy Good] No. And so, Dave lived 12 years after he was diagnosed and towards the end of his life I would sit, and by this time he was living at HallMar, which was a care center then within Mercy, and I'd sit and look at him and go like, how much longer can you do this? And then I would think, how much longer can I do this? And then, even though it was probably not really necessary, but I'd worry about buying strawberries out of season because thinking about I'm going to need this money to care for Dave, plus for many caregivers then how it is that they're going to be able to care for themselves after their person dies if they have spent all their resources making sure that the care is happening for whoever it is that they are caring for?

[Nebbe] We've been focusing on caregivers. The people who receive care also have a complex range of experiences. And we're going to hear from Hannah Soyer who has been receiving around the clock care since she was three years old.

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[Hannah Soyer] Okay, are you ready to do half up, half down?

[Caregiver] Yes.

[Hannah Soyer] I have a form of spinal muscular atrophy, which is a form of muscular dystrophy and how that shows up in my life is just that many physical things I am unable to do myself.

[Hannah Soyer] I think that's, it's okay. What it will do is it will work.

[Hannah Soyer] I've had hired caregivers come in and out of my life since I was three. When I moved away to college at 18, I started having around the clock caregivers because my parents weren't there.

[Hannah Soyer] Yeah, that looks good.

[Hannah Soyer] Ever since then I've been hiring and managing all of my personal caregivers. I've had probably over a hundred people at this point in my life. I have people help me with pretty much any day-to-day activity that someone might need help with.

[Hannah Soyer] Don't you think these shoes make me look like Benjamin Franklin?

[Caregiver] I was just about to say that.

[Hannah Soyer] They look like the Founding Father shoe.

[Hannah Soyer] Really, it's more than just personal care. They're supporting me in living a full life that I want to live.

[Caregiver] Shall we?

[Hannah Soyer] I think that question of what does a full and satisfying life look like to me, that is having the autonomy to make my own choices about how I spend my time.

[Hannah Soyer] Seth and I are going to make lemon butter chicken cutlets. And so, I am looking up the recipe.

[Hannah Soyer] I really love to cook and because of my disability, the nature of my condition, I need my caregiver to do the full physical act of cooking.

[Hannah Soyer] I think we should quarter them.

[Caregiver] Quarter.

[Hannah Soyer] And I do all of the instructing and telling them what to do.

[Hannah Soyer] Why don't we drizzle and then salt, pepper, garlic.

[Caregiver] Okay.

[Hannah Soyer] And all of this, none of this really touches on the support that I need to stay alive, like the actual getting me water if I'm coughing, which happens a lot, or picking up my head if it falls back, which happens a lot, or helping me, you know, do any of the things that humans do throughout the day? So, I don't want that to be forgotten. But it is so much more than that as well. I want to create the most sustainable care situation, care network as possible.

[Caregiver] Can I butterfly it?

[Hannah Soyer] Whatever you want to do, man. This is your life, well, it's my life --

[Caregiver] It's our life together.

[Hannah Soyer] Right. Right, right right.

[Hannah Soyer] Part of that has been reframing caregiving in my mind as a really interdependent relationship where my caregivers are supporting me and then remembering how I'm supporting them as well and thinking of it as a growing community.

[Hannah Soyer] This is really impressive.

[Caregiver] We did it!

[Hannah Soyer] Oh my goodness!

[Caregiver] Look at those taters!

[Hannah Soyer] Pretty nice!

[Hannah Soyer] Every human, every life form does need other people to live and that is a fact of life that I think our culture and country and society doesn't want to deal with. It is such a unique experience and although needing care is without a doubt the largest stressor in my life, it is also one of the greatest blessings.

[Hannah Soyer] We did good.

[Caregiver] Mm-hmm.

[Hannah Soyer] Mm-hmm.

[Hannah Soyer] I have met amazing people who I never would have met. A lot of them are my friends, have become my friends, and so being able to build a life with my friends is pretty cool.

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[Nebbe] Kathy, we've covered so many of the challenges that caregivers face, the personal challenges, the systemic challenges. What needs to change to make this work better?

[Kathy Good] Well, one of the first things that comes to my mind is that I think that -- and I think AARP is working on this -- is a tax break for caregivers. I think their figure is $5,000 I think and it seems very reasonable that somehow when we've talked about the financial concerns, all of the things that take money, that that would be a logical thing to have happen. I also believe that there needs to be some change in the workplace that there are caregivers throughout every single company and corporation and entity in this state. And if they became more flexible in terms of in the workplace to recognize that caregivers need some sort of accommodations so that they can both be active in their employment as well as being able to take care of their whoever it is that they are responsible for.

[Nebbe] So, people have been working on this for a long time. Progress has been very slow. What gives you hope?

[Kathy Good] Well, what gives me hope is the very fact that for ten years we have been in the process of developing the Family Caregivers Center and we've had all of these philanthropic contributions to make all of that work and I think that caregiving is much more in the news thanks to AARP and I think that the federal government currently through their GUIDE program has recognized that caregivers need a break because their GUIDE program sets up for caregivers who are caring for someone with dementia money to pay for respite or for a break.

[Nebbe] Kathy, we are out of time. We could talk all day. But thank you so much for being here and for talking with me.

[Kathy Good] Thank you. It's been my pleasure and this has been quite interesting to me to have you ask all these questions and I really appreciate the opportunity to be here.

[Nebbe] And thank you for joining me as we explore the complexities of caregiving in Iowa. I'm Charity Nebbe. See you next time for more Iowa Life.

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Funding for Iowa Life is provided by --

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The Pella Rolscreen Foundation is a proud supporter of Iowa PBS. Pella Windows and Doors strives to better our communities and build a better tomorrow.

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And by, the Lainie Grimm Fund for inclusive programming at the Iowa PBS Foundation.