Caring for Caregivers Discussion

I'm Charity Nebbe; I am the host of Iowa Life. Thank you all so much for being here. I am excited to see the whole documentary—I haven't seen all of Iowa Life either—so I'm excited about that too. And remember, that’s coming up on June 24.

I'm going to introduce our panel. We’re going to talk about a lot of issues. Just to start off, there is a lot of sorrow in the stories we have seen tonight, but there is also a lot of beauty—so much love, and so much dignity as well. In a conversation about caregiving, there is sadness and there is stress, but there is also so much love.

I want to introduce our guests. Kathy Good is here with me tonight. She is the Senior Director of the Family Innovation Center for Aging and Dementia in Cedar Rapids. Hello, Kathy.

Kathy Good: Hello, Charity.

Charity Nebbe: Michael Wagler is also here; he is the State Director with AARP Iowa. Michael, welcome. And also Jennifer Jones, the Program Coordinator of the Optimal Aging Initiative at the Csomay Center for Gerontological Excellence at the University of Iowa College of Nursing. Welcome, Jennifer.

Jennifer Jones: Thank you.

Charity Nebbe: All of your organizations do a lot of things, but you also all offer services for caregivers—and that’s what we’re focusing on tonight. Kathy, let me start with you. And briefly—although that’s hard—you’re featured on Iowa Life, so folks will hear more from you there too. But briefly, tell me what your role is in serving caregivers.

Kathy Good: We are very fortunate to have the DeWolf Innovation Center in Cedar Rapids. It is a place where we are trying to reduce the stigma and stereotypes regarding dementia and aging. It also houses the Mercy Center for Memory Health, where people are assessed if they have memory concerns.

It includes the Family Caregiver Center—which is what we’re talking about tonight. It supports family caregivers of adults who are living with chronic conditions, including dementia.

We also have our Community Connections program, which provides direct support for people living with dementia. It's kind of a social adult day program that provides engaging activities and also gives respite to their caregivers.

Additionally, we have an age- and dementia-friendly showroom and kiosk that features products, information, and assistive technology to help people live better and longer in their own homes and age in place.

So those are the key services we provide through the DeWolf Innovation Center. But tonight, we’re really here to talk about what happens through our Family Caregiver Center—and I’m sure we’ll get into that more.

Charity Nebbe: I do want to mention, as I said, you’re in Cedar Rapids, but many of these resources are available to people outside of Cedar Rapids.

Kathy Good: Absolutely. We have no geographic boundaries. Many of the services and supports we offer—our support groups, our educational sessions—are available via Zoom. You can live anywhere in Iowa or even the Midwest. In fact, we’ve had someone from Tanzania join our Men’s Caregiver Coffee. There are no boundaries.

Charity Nebbe: And I’m sure, especially in Iowa where we have a lot of rural parts of the state, people might still think, “Oh, I wish that was in my backyard” when they hear about your programs.

Kathy Good: We wish it was as well. [laughter]

Charity Nebbe: But there are ways to connect, even if you're a long way from Cedar Rapids.

Kathy Good: Yes—and we are very willing to talk with caregivers one-on-one: to hear their stories, help them identify their needs, provide emotional support, and connect them to the resources we know are available, either in our own organization or through others across the state—especially the Area Agencies on Aging. There are resources. Sometimes it’s tough to figure out what you need, how to get there, and how to handle the paperwork.

Charity Nebbe: We’ll dig into that. I think that’s the number one challenge for a lot of caregivers. Michael, we know AARP does a lot. What’s your role with caregivers?

Michael Wagler: Big picture—I think we’re all familiar with AARP. It's a voice and advocate for the community over 50 here in Iowa and across the country. We’re really focused on mission and service-oriented work.

Part of the way we do that is through advocacy, providing a voice, building resources, hosting outreach events, and creating awareness.

Some very specific ways we do that include our online Caregiving Hub. It’s a no-wrong-door policy. There are so many ways to gain access to information. We want to be one of those hubs—whether it’s through the website or a printed guide. We have a lot of good resources I know we’ll talk about.

Charity Nebbe: I am lucky enough to be 50—but do you have to be that age to take advantage of AARP?

Michael Wagler: You do not. We have a slogan: “The younger you are, the more you need AARP.” While we’re focused on that 50+ age group, as a family caregiver myself, there are a number of ways AARP has helped me.

Charity Nebbe: Jennifer, you have the longest title, so I’ll say it again—Program Coordinator of the Optimal Aging Initiative at the University of Iowa College of Nursing. I know the center does a lot. Tell me about your role in caregiving.

Jennifer Jones: We had a wonderful community individual I happened to meet on a completely random evening, and we connected. About six months later, she reached out and said, “Here’s my situation. I’m a 60-year-old daughter who came back to Iowa to help my mother and father. I’m an adult child caregiver. I’m part of the sandwich generation. But there’s no caregiver group that really supports me.”

She said, “I think you should start one.” So we did. That was about a year ago.

In that role, hosting and organizing this group, what we do is connect people. We connect older adults to resources, and connect caregivers to education and support.

It’s really about providing the starting point. So many people come to us and say, “I don’t even know where to start.”

Charity Nebbe: I’ll let both of you weigh in on this as well. I also want to say, having used a lot of these resources—sometimes you don’t get quite what you’re looking for. There are so many caregivers in Iowa. We have an aging population, and there are so many people who need help. These agencies on aging cover a lot of counties. If you run into a roadblock, you have to keep looking and asking.

Michael Wagler: Unfortunately, that is the reality for so many medical journeys. It’s about making sure you’re advocating for yourself—and for the group of people you’re with.

Jennifer Jones: We refer to trying on resources like trying on shoes. You may pull some pairs on and they’re horrible. Then you might get away with one. Then you find the right resource. The problem of doing that as a caregiver is the exhaustion level. You have to keep going and going, and it can be really frustrating.

Coming back to our adult child caregiver group, there's this common question of, “I don’t even know where to start.” We developed what we call the “First Five.” Where are the first five places every individual should be able to reach out to, to get some kind of starting point? It may not be the crystal-ball answer that’s perfect, but it’s a start.

You should be able to call your provider—or the provider of the person you're caring for. I’ll put a caveat on that and say they may not know. If we’re going to start the conversation about caregiving, all of us in this room—we are the ones who will make a change. We will educate the medical community. Start there.

What it does is it should flag either your doctor to ask a question the next time you see them, or the person for whom you’re providing care. There should be a note that says, “I called and I said I need a resource.” It’s a start.

Please reach out. We have no geographic boundaries. We will do our best to connect you. All 99 counties are covered. They will know someone in your county who can help. There’s also a website called Iowa Compass. This is run out of the University of Iowa. You can go in and filter by your age, location, need, zip code. That serves as a starting point. This is one of the resources we thought was really important to give tonight.

Charity Nebbe: I’ll mention this as well—I’m Gen X. Our first impulse is to go to the internet. I ran into so many roadblocks. Some of the websites I thought could tell me everything… Sometimes you have to overcome your avoidance of the phone and make a phone call. There are knowledgeable people who will tell you where you should go. What do you want to add?

Kathy Good: The reason the Family Caregiver Center got started was because, when I was a social worker, I was able to figure out what our needs were. I was able to figure out where you could go to get there, to put it together by committee.

When the president and CEO of the medical center was interested in possibly creating a Family Caregiver Center, I was like, bingo. There was the answer to the question I had: How do regular people—who don’t have decades of social work experience—possibly figure this out?

It’s complex. And ongoing.

One of the things we quickly did was to create an opportunity for any caregiver—it doesn’t matter if there was medical care at all—to have access to trained staff and volunteers for one-on-one visits so your particular needs can be identified and you can do the best you can.

I like what you’re saying: start. You have to start someplace. Then continue to provide emotional support—because that is so important—as well as the connections to resources.

Charity Nebbe: We’ll talk more about some of the resources that we need to access right away in a moment. But I want to read a couple of questions that are very specific about situations—although every caregiving journey is different.

This one says: I am the sole caregiver for my husband with no other support. I would like to come up with a plan he can follow to get the daily care he will need on such short notice. Do you have suggestions on what should be included?

This is another getting started question.

Kathy Good: When I think about that, we have something called activities of daily living, which include dressing, feeding—all of those things. What first comes to my head is someone who could help that person and the caregiver do an assessment about what the needs are.

In our communities, I think a primary care physician could refer you to an occupational therapist who could do that. We also have all kinds of organizations—home health, non-medical, in-home care providers—who have trained aides who could come in and help do that assessment, if the person was not able to do that alone. Those are top-of-my-head thoughts in terms of how that could be handled.

Charity Nebbe: Anybody want to add?

Michael Wagler: AARP has a resource—Healthcare Connect. It’s a checklist and templates on how to organize tasks on a day-to-day basis. Trying to look at the web of what your medical team may be, organizing that in one place—it really becomes a resource to help organize those thoughts. It won’t be a silver bullet, but it could be a tool to get started in an organized way.

Charity Nebbe: To help you start to understand the questions you need to be asking.

Here’s another question: As an adult child of aging parents—both in their mid-80s—we want to support our parents, but they are stubborn Iowans who continue to live in their home in rural Iowa with over an acre to maintain. How do we best steer them toward support?

I want to focus on that last part of the question. Maybe we start with you, because this is not an easy answer. It’s a very real problem. We know that the adults we are caring for have been independent adults for a long time. They have their dignity. Sometimes—we’ve talked about this—for example, my mother has Alzheimer’s and she also does not know that she has it. So suggesting to her that she has Alzheimer’s creates an emotional eruption that can derail an entire afternoon. We have to wait until she falls asleep and resets.

When someone needs help but does not want us to help them—or is not willing to admit they need help—what are some things we can do to work within the system?

Jennifer Jones: The three of us were talking about these situations. And it’s not just stubborn Iowans—because my parents live in Illinois.

You made a really good point. I wanted to touch on that. These older adults in our lives—regardless of whether they are your parents or whoever it might be—they are adults who have had long lives and who deserve the kind of care they want, the way they want.

It’s difficult, because those of us who are removed a bit from the situation can see: this is not good. They need help.

I’ll share personally that one of the things that worked in my favor with my parents—they lived in the middle of nowhere. They had to stand in the bathtub to get the best cell phone reception. They lived in a rural area where there were not many resources.

So I came back to them and said, “This is a safety issue.” They didn’t want to give up living where they lived—this was their dream home. But can you muster up the courage, as an adult child, to sit down with your parents and say: “I’m not comfortable. This scares me. I’m afraid one of you will get hurt.”

Ask the question: “What happens when you fall?” And then—create the quiet space. Let them think. It may not be the answer they want.

Can we call home health? Can we help you with that? Help you navigate how that conversation starts.

You’re not going to win all of these issues. Bite-sized pieces are important. For my parents, it was giving up the mowing. Nobody wants to give it up. My dad still could, but it meant he was outside for hours. So it became a matter of, could we call someone and get on their schedule for a month? That was a big victory. Then hopefully we can make progress.

Charity Nebbe: If you are the caregiver, you need to take care of yourself. Caring for the caregiver is really important.

I know you’re chuckling—it is so hard. When you are providing care, you can use it as a conversation starter. I think that’s part of the ingenuity of being a caregiver. If we didn’t respond to this angular conversation, maybe I’ll come in the side door—or the back door—or the window.

For example: “I’m working on my will and my power of attorney, and I want the people who will wind up being my caregiver to be prepared.” What do you think about that?

Jennifer Jones: I’m trying to use those kinds of things as conversation starters.

Charity Nebbe: You already brought this up, but it’s worth looking at—is your home fit for someone to age? We all want to age in place. Looking at universal design in our own homes is a great plan.

Let’s move on. There are so many big, big questions.

Caregivers often report feeling unseen or undervalued. How do you think we can shift the culture so caregivers are considered essential partners in care? And how do you personally shift your own thinking? A lot of us think, “I’m not really a caregiver.”

Jennifer Jones: I think it’s starting the conversation—like we’re doing tonight. Watching those documentaries and knowing that you have someone who was willing to share this… I think there will be more of this.

Your conversation—that’s how it’s going to start. We’re changing the conversation. Older baby boomers, this was not a conversation. Society has changed.

There used to be someone within the family unit who provided the care. Now, like Michael said, say it out loud: “I am a caregiver.” And then all of a sudden, you find out everybody on your block has been in a similar situation.

That’s what it’s going to take—just making it a common conversation. That’s what we are charged with doing. Everyone involved this evening will help change the conversation for the next generation.

Kathy Good: I think AARP says there are 330,000 caregivers in Iowa. It’s not just about recognizing that we do exist—AARP has been at this a long time, trying to say that caregivers are out there and they need support.

There are 66,000 Iowans living with dementia. They all have at least one caregiver. Probably a primary and a secondary. There is a lot of caregiving going on.

Just acknowledging that those caregivers exist is huge. It’s hard sometimes for caregivers to understand that they are caregivers. They just think they’re a son or daughter or a spouse—and that’s what they do.

More programs like this will help.

Michael Wagler: To jump on your point, there is an industry of caregivers that exists.

Charity Nebbe: We got a comment that says, “I’m struggling mentally. I haven’t found the right fit.” You can try out Zoom meetings.

Kathy Good: Or one-on-one meetings.

Charity Nebbe: That kind of social support—whether it’s a support group or something else—is really important. I struggle with this. I’m too busy to get support. A lot of caregivers feel that way.

How do we deal with that?

Jennifer Jones: [Laughing] He just sat back on that.

Michael Wagler: I didn’t even raise my microphone!

Kathy Good: As you said—sometimes you feel like you’re too busy. One of the things we launched last October was our online Family Caregiver Center.

I think you could be talking to someone at midnight—because they might also be up. In our online community, there are resources that can help you connect with other caregivers. That normalizes what’s happening to you.

Maybe that’s a way to make support more available—if you’re not able to Zoom into one of our groups, there are other resources that might work better for you.

We started the online community so caregivers could interact and learn from each other. Some caregivers have figured out something that might just work for you. You can pose questions—and also give answers.

Charity Nebbe: I saw a great quote from someone the other day who found a support group that said: “We’re not all in this together—but at least I know we’re in our leaky boats on the same motion.” [Laughter]

Michael Wagler: If my wife were here, she would be the first to remind me that I don’t always do as I say. Because caring for ourselves as caregivers is so important—and I’m just as bad as everyone else.

We’re too busy. We get involved in other things, and we don’t think about caring for ourselves. Stopping. Slowing down. Taking a breath.

Doing whatever I do to chill out. That’s where having an accountability partner is important. Someone to remind me to take a step back. Even if it’s just to say, “I’m going to watch a TV show I never get to watch.” That’s my time.

Charity Nebbe: Our adult child caregiver group is a quiet group. I send out information. It’s hard to get together. But we do make an effort.

As we roll into the end of the academic year, we try to do something fun—get together, share stories and conversation. Sometimes it’s not even about caregiving.

But when we’re taking care of ourselves as caregivers, we’re better able to take care of others. That’s really difficult to do.

We have a lovely individual in the Iowa City area who is helping families. She’s devoted her life to doing this. She helps people do assessments, have conversations, walk through paperwork, and share resources.

One day, I mentioned visiting my mother and feeling guilty for not staying longer. She looked at me and asked, “Can your mother interact with you for hours?” I said no.

She said, “Sometimes, if she’s really clear, you get a really great half hour. Be okay with that.”

That was life-altering—for someone with her experience and wisdom to say that to me. It gave me the freedom to not carry caregiver guilt. And that’s something we haven’t mentioned yet tonight, but I do think it’s a real thing.

Michael Wagler: On top of everything that was mentioned, there is social isolation. It is an important part of all of our lives. It is an important challenge that we need to address. I think it doubles down when it is a caregiver who feels like they are caring for kids and families. When they have time, they are by themselves. Sometimes a support group doesn't have to say “caregiving” in the name. It could be a church group, poker club. Just finding your community of people could be just as important as finding another group.

Charity Nebbe: I have a great final question, but I have to ask this first. You’ve already talked about it. Caregiving is an unpaid thing for many caregivers. It’s a huge amount of time. A huge amount of energy. A huge amount of love. But also—it’s expensive to be a caregiver. The financial strain in our culture, with our health care system, that caregiving puts on families is enormous. I know AARP does advocacy work. What are you working for? What are you advocating for? What can we potentially see that could help caregivers?

Michael Wagler: We focus our legislative advocacy work on family caregivers. That is one of the key elements. When we talk to family caregivers across the state and nation, we talk about resources. But one of the financial strains always becomes a key challenge.

Nationally, we are working with a bipartisan coalition of legislators on a Credit for Caring. That would be a national federal tax credit for caregivers. Knowing that, on average, a caregiver spends about $7,200 every year out of pocket—that becomes not only a strain on their pocketbook, but what that means in relation to the strain on having to work full-time, and knowing that it continues to compound. In our statehouse, we continue to put family caregiving top of mind.

As we all know from an advocacy perspective, just because it’s top of mind doesn’t mean action has been taken or will be taken. But from a mission perspective, we are focused on replicating that tax credit here in the state of Iowa.

Michael Wagler:  Also, we’re looking at a policy that is currently going on as it relates to work requirements. There are a number of exemptions. This is a journey we will all be going down. For family caregivers, this is something we advocated—to make sure this was one of the exempted classes. To make sure that work requirements and family caregiving can align. But we have to be thoughtful about that.

Our paid family leave—and what that means for businesses and corporations here in Iowa—that is something that was passed: paid family leave for families. What we are really trying to do is make sure that family caregiving is a topic of conversation that is repeated over and over again. It is self-identifying. So many invisible populations. Visibility and awareness become two of the strongest ways we can continue to advocate.

Charity Nebbe: We are out of time, but I want to ask this final question. This is from one of our viewers: From the perspective of the caregivers on the panel, what is one thing that helped make caregiving a little easier or more manageable for you or your loved one? Just one thing?

Jennifer Jones: Going back to the bite-sized pieces. That has worked really well for us. I talk to my dad every week on the phone. I see them every couple of weeks.

We try to choose one little thing every time we are together to talk about—whatever it might be.

Charity Nebbe: Can I clean one cupboard?

Jennifer: Jones One little bite-sized piece of information that we can tackle. Sometimes it leads to more, and that is the total for the day. And that’s OK.

Michael Wagler: For me, it was highlighted in one of the clips—of the husband who was caring for his wife. He made that comment that he just wanted to get back to partially having the role of the husband.

For me and my parents, I felt like the caregiver all the time. The one thing I do is just try to find joy in the time I have. So it’s stepping back and recognizing that.

For us, the way we can consistently do it is—my parents still get their weekly paper from their hometown. Every Thursday, when it comes in the mail to my house, I take it up to their house and we read the paper and read about everything—from who got arrested, to what the obituaries look like, to how the local football team is doing. It’s those kinds of things that spark a little bit of joy that don’t require the challenge of eating, or the fact that the TV never works, or whatever it might be. That little spark of joy is something I try to spend time doing.

Charity Nebbe: I take my mom out for chai tea. Which she's never had before, and it's a revelation every time; she loves it! Well have it again this Sunday.

Kathy Good: The one thing we decided together right after my husband’s diagnosis was—we did not have any control over the fact that he was diagnosed with dementia, but we did have control over how we could deal with it. We decided that we would focus on all the things that still worked—because there were a ton of things that still worked—and we would accommodate the things that did not work. Not deny the things that didn’t work. Try to find out creatively how we could accommodate those things so they too continue to work.

Charity Nebbe: Thank you all so much for being part of this conversation tonight. Thank you. And thank you all so much for being here.

Also, thank you to everyone here at Iowa PBS. As you know, we've done a caregiving special that will air on June 24 at 6:30 p.m. and then the national caregiving special will air at 8:00 p.m. Central Time that same night.

And I'm going to make Theresa Knight and Emily Kestel stand up and wave because they produce Iowa Life. You already met Andrew Batt and Caryline Clark put together this program tonight.  [clapping]

Charity Nebbe: There are so many people who work here at Iowa PBS. You get to see what’s on television, but remember it takes a village to make public media. But thank  you again so much for being here. [clapping]