How to Balance the Stresses and Joys of Caregiving

Hi, I’m Mike Ellison, with An AARP Take on Today.

Caring for a family member is one of the most important, paradoxical roles you could take on. According to the Caregiving in the U.S. 2020 report from AARP, caregivers’ positive emotions often coexist with feelings of isolation or stress. Not to mention, 1 in 5 say they’ve experienced high financial strain because of caregiving. Still, about half feel that the role gives them a sense of purpose.

As we’re about to discuss, these feelings can combine in unexpected ways.

Today, we're looking at life as an African American caregiver, starting with the great story of Rita Choula. She's the Director of Caregiving for AARP Public Policy Institute.

Rita is here to share her experience as a family caregiver for her mother and provide resources other caregivers can look to for support while caring for their loved ones.

Mike Ellison:

Rita, thank you so much for joining us on Take on Today. How are you?

Rita Choula:

Thank you. It's a pleasure to be here. I'm doing well.

Mike Ellison:

Thank you so much for joining us. You have a very compelling caregiving story. If you don't mind, would you share that with us please?

Rita Choula:

I started caring for my mom about 15 years ago, and before that, I cared for my grandmother for several years. But in the majority of my caregiving experience really has focused on my mother who after several years of misdiagnosis was finally diagnosed with a condition called frontal temporal dementia. Many folks know about Alzheimer's, but frontal temporal is another form of dementia and it's actually the most common form of dementia for those under 60. And she was indeed under 60 when she was diagnosed, but she started showing symptoms well before then. And as you might imagine, you're at the prime of your life in that time, and so it's difficult, not just for you, the caregiver, but for you as the individual.

Mike Ellison:

Yeah.

Rita Choula:

So that's really the beginning of our caregiving journey.

Mike Ellison:

Can you tell us about the events and the conversations that led to you being the caregiver for your mother?

Rita Choula:

Sure. When I think about what led me to caregiving for my mother, there was really not an option there. I think that so many families, so many children, spouses, partners, family, friends really find themselves in a situation where somebody important in their life needs this support and needs this help. And for my mom, she was falling, she was forgetting things, but it wasn't as much the forgetfulness for her, it was more her behaviors changed. She always was a huge volunteer in the community, in our church. She loved going to church, loved being a part of her faith community. She identified herself as a black woman Catholic who really gave of herself. And when we started to see a shift in those things, we knew that something was going on.

Rita Choula:

I think one of the things that stuck out for me the most was when, after a couple of years of trying, my husband and I finally realized that we were going to have a child. And I remember just the emotion that went with that as you might imagine, and when I shared it with her, there was a real lack of empathy. There was a lack of excitement. It was like, I had just told her that the sky was blue. And that's when we knew, among other things, that things were just not right. And at a time like that, it's easy or it could be easy for some to walk away, especially for myself and my husband, as we are trying to start a new family, had just gotten married, but how do you walk away? This is your mother. This is not just someone that cared for you, but someone that needed help.

Mike Ellison:

Did she have any resistance at first when you said, "Listen, mom, I'm going to be your caregiver." Do you know what I mean? A lot of times people don't want to feel like a burden on family members. Was there any resistance on her part?

Rita Choula:

It's interesting you ask that. One thing my mom made sure of, she always made sure that, and maybe sometimes too much, she had every insurance that one might want or need. We had literally just had the conversation as we started to see some things going on, but really it was more being prepared that she said, "I think we need to do whatever that paperwork is that we need to do, if something goes wrong or I need help." She's talking about financial power of attorney and healthcare power of attorney that were able to get that in place. So, there wasn't necessarily a lot of resistance. I think part of it too, is that the way that I saw it, I never wanted to take over. I never wanted my mom to lose her dignity in any of this.

Rita Choula:

And so, it was very important for me that I didn't come across as, this is my journey, this is my life, this is what I am doing. It was about mom, "Where can we meet you?". And that changed as her condition progressed. But that partnership between us for as long as it could be there was really important. And I think comforting for her and that even if it was, "I want to wear a blue shirt today," versus me just laying out clothes for her was really critical.

Mike Ellison:

According to a 2020 meta-analysis in the journal, The Gerontologists, African American dementia caregivers have somewhat better psychological wellbeing than their white counterparts. And the authors offered several possible reasons, right? Including the expectation among African Americans that family and community members will look out for one another the same way you did. And they also cite their relatively greater commitment to religious practices and values. Were you able to also create this sense of community and support around your mother as her caregiver?

Rita Choula:

I'm so glad that you raised that research, that data, because I have a couple of thoughts around that. On the one hand, I was able, to a certain extent, to create community, but community was very limited because a lot of that journey was just me, my husband, my sister, and even my young children. I think that the knowledge or the thought that there is this ready-made community support, particularly around those living with dementia, is true, but not in all circumstances. And this is why it's so important that when we talk about caregiving, that we look at each individual story as that each individual story. Things have progressed significantly from when I first started caregiving. Faith-based communities are starting to recognize and understand the importance of supporting their members more.

Rita Choula:

I think very often when I said, "I didn't have a choice," it was something that I was going to do anyway. What that often negates though is that I still needed help. And I think oftentimes in various communities, we look at asking for help as, oh, that's a weakness. I can't be weak in this. Like, I need to own this. And by not asking for help, it's a detriment, not only to you as the individual providing this caregiving, but ultimately to the person that you're caring for. And so oftentimes there were a couple of situations where I did reach out for help. And it was one of those things where I was raised to believe we don't talk about this stuff outside of our home. This is family business. And so, I held onto that until I couldn't do it anymore. And it was at that point where I realized I had to figure out help, or none of us was going to make it off the ship.

Rita Choula:

And so, I think that increasingly we see community rallying, we see resources in community, but there's still so much work to be done to normalize this conversation, especially as caregivers, some caregivers get younger. I was early 30s when I started my caregiving journey, late 20s, early 30s. And so, there was so much that I didn't know, I hadn't experienced, I was trying to build a life for myself. And so that's why it's really critical to wherever you can reach out for those supports, it's important to do that. But it's also important for communities, for faith-based communities, other community-based organizations, healthcare providers to recognize these challenges and offer these supports.

Mike Ellison:

Yeah. You mentioned the faith-based community and the assumption that the church is going to be there, but you know particularly in a lot of churches, "Hey, praying for you, sister. Praying for you, sister." And it's like, yeah, I appreciate that. I could use some tangible support though. What are some resources for listeners who are looking to join a community and build a network of support?

Rita Choula:

There are a number of resources. I'll start with AARP's resources. We've really been very intentional about making sure and trying to understand the caregiving journey and where those challenges may appear. We have a number of resources that are available on our website, www.aarp.org\caregiving. Our prepare-to-care guide really offers checklists and other support for someone that has no idea necessarily what they're stepping into. And this guide is really good. Even if you're not a caregiver right now, this is one of those things that you really want to know about. We also recognize that the financial strain of caregiving is very difficult. We know that even in the black caregiving community, that since the pandemic, we were talking about caregiving and hadn't really talked about how the pandemic has just layered even more things onto that. But we know that one third of black caregivers are spending more time and more out of pocket paying for expenses like that.

Rita Choula:

And so how do you manage that? We have a financial workbook for caregivers that offers that opportunity. We also have a legal checklist. I talked about power of attorney and different wills and different topics that are really critical to know and understand if you're taking on that care of someone. And we have something that I think is really important. We learn from caregivers that caregiving is yes, transportation, yes, paying bills, but many caregivers are out there now, actually 20 million caregivers are out there now trying to do wound care, trying to change catheters, really complex care tasks. And unfortunately, they're saying they don't know how to do it. They don't remember if they were taught. So, AARP, through our Home Alone Alliance, has a series of how to videos on many of these tasks.

Rita Choula:

And then one of the final things I'll say about AARP resources is our discussion group on Facebook, where a caregiver really has the opportunity to engage with other caregivers, such as themselves, to talk about challenges, to celebrate joys, to learn about questions that they may have and how other people are dealing with it. You have this no judgment zone, this safe zone where you really can be yourself as that caregiver and bond and connect with other caregivers.

Mike Ellison:

And I wanted to come back around to the financial part of it because people are experiencing financial strains. You spoke to some of those resources that are available to caregivers, and perhaps you may be able to talk a bit about how you and your family dealt with that in the midst of your journey.

Rita Choula:

Absolutely. So, as I mentioned, I was younger when I first started caregiving and did it for 15 years. So, it was such a challenge. My husband and I are still climbing our way out of debt basically when we did have to pay out of pocket for so many things, whether it was in continents care, whether it was paying for home health that wasn't covered. And we were doing this while at the same time caring for two young children. I remember speaking about this, and I remember there was a day I had just found a day center for my mom, a group home where my mom could stay as her condition worsened and became very challenging to manage with a newborn. And I remember dropping her off, and as you might imagine, she was very upset and confused, and I had spent a lot of time with her kind of helping to work through that.

Rita Choula:

And the very next day, I had to start my job. I was coming off maternity leave and that very next day I dropped my daughter off at daycare. And she was sobbing as most children that have just been with their mother for three months. And I remember sitting in the car and I cried so hard. I felt so alone. I felt that I was abandoning my child, my mother. I was like, "Do I need to go back to work?" It was a very vulnerable, lonely time in my life. And at the end of the day, I was also like, "Can I afford this?" Like, "Am I working just to do this? Why don't I just stay home and take care of everyone?" Well, that wasn't the option either. And my story is my story, but it is one of millions of stories of family caregivers that are out there.

Rita Choula:

For instance, we know that black caregivers spend an average of $6,700 out of pocket on caregiving expenses in 2021. That is not a small amount of money. It's a challenge because as that caregiver, especially a sandwich caregiver, like I was for, I guess, about eight years before my mom passed, you are constantly balancing. And as my grandmother would say, robbing Peter to pay Paul, the old saying. And it was a challenge for me because at the end of the day, everyone was barely taken care of, but then my husband and I would sit and we would think about it and say, "My goodness, what if something happens to us. We are now spending our money on all of this; will we be able to help our children go to college? Will we be able to retire at an age that we want to retire?" Because my mom was diagnosed so early, it was early onset of this frontal temporal dementia, that we started spending money on her care well many years before any of us thought that would happen.

Rita Choula:

And so, it just speaks to this financial crises that can really occur. And that so often when we say it is the family's responsibility to provide care, with what? With what? In so many cases. And that's something we have to get real about as we have these conversations.

Mike Ellison:

Proactive support. That’s really big. I mean, if you can, when you had those moments, what did that do for you and your husband and your family?

Rita Choula:

It was really life changing for me. I think it didn't happen until I opened myself up for it to happen. Because as you said, I don't know, Mike, you're reading me too well here, but when people would ask, "How are you doing?" I would say, "Oh, I'm fine. Things are great." When inside, I was like, I am not going to make it, but I can't let people know this. Right?

Mike Ellison:

Right.

Rita Choula:

So, if people don't know and they don't know you, they don't want to step on your toes, they don't want to intrude, right? They don't want to make you feel like you're not doing a good job. So, I changed that because I really realized that I was not doing okay. I was going through the motions, but I was not living, I was not thriving. And it put me in a different situation, even with my mom where it became that strain, and it affected me as her daughter versus me being her caregiver. I didn't want to have that animosity. And so, as people began to say, "Are you doing okay?" "No, I'm really not doing okay. I have to go to grocery store. I have to go pick up something for the kids' daycare." And as I was able to articulate all of my stresses, I gave an opening to people to say, "Oh, well, I can run to the store and do that for you." Or, "Oh, don't worry about going here. I'll handle that meeting for you, Rita. You handle what you need to handle." Again, it's that asking for help that can be challenging.

Rita Choula:

I mean, we had friends who would literally say, "I know you don't have time to talk, but I just want to bring you a cup..." They would bring me a cup of tea. They would go to a store, get a cup of tea and a donut and say, "Take 10 minutes to drink this and feel better." And so that's on the light side. Some of the other side, some of the other things were, "I know you're tired. Why don't you take the kids?" Because as a sandwich caregiver, sometimes it was, do I take my daughter to her ballet recital, or do I go visit my mom for the full two hours? And so then to have a family member or friend say, "You got to go to the recital. I'll go sit with mom for an hour. And when you can make it, you come." You know what I mean?

Rita Choula:

So, it's those tangible things that really, it took a minute for me to get there and realize I didn't have to own all of this. And once that happened, it really opened up the opportunity to build community. And it really allowed my mom to feel loved by others. I trusted others into our circle, and it really created a support system for myself that my kids were even able to sit back and feel loved and supported and embraced by this larger community.

Mike Ellison:

Rita, I really appreciate it, we've covered so much. If you don't mind, that relationship between grandmother and grandchild is so special, is there any story that comes to mind of just one of those joyous moments of the interaction of your mother with your child, whether it's at home or when you had to make that tough decision to put her in full-time care?

Rita Choula:

For me, and it was with both of my children, and it was really, my mom could be having the worst day, but to see her grandchildren come around that corner, she would just light up. And I think one of the things that my husband and I were so adamant about and so intentional about is allowing them to have- If you could see me, you would see air quotes- to have this normal relationship, whatever that looked like. And so, for my mom, it was making sure that she had snacks in her drawer for her grandchildren, that when they came in there, it was mommy doesn't give me these chips every day, but I know grandma will. And she sure would do that. It was seeing them celebrate with her on the great days and laugh with her and talk with her. And it was also them seeing her on her not-so-great days when they know she needed to eat but didn't want to eat. And so, seeing my children one hold her hand while the other fed her a potato chip or fed her a cookie, to see that love between them was very life changing for me.

Rita Choula:

It made me see that all that we, as a family, had gone through in this journey that we were on, at the end of the day, from the very first moment, I knew that I wanted my mom to live with dignity through this whole process. That was so important for me. And to see our family be able to bond through all of it is something that I will always, always be grateful for, and has made my children the most empathetic children. And when my mom was first on hospice, I said, "Mom, what do you want to do here?" We were talking through things, and she said, "I want to do whatever I can do to stay here with my grandchildren more. I'm not ready to go yet." And sure enough, she came off of hospice. She did end up two years later going back on, but in that time, she was able to in her own way, right? I think so often we hear about people with dementia, and we write them off, but they're people, right?

Mike Ellison:

That's right.

Rita Choula:

And whatever the journey we, as caregivers, are on, we are caring for an individual, and the challenge is prioritizing their needs with ensuring that we take care of ourselves. And that is the big challenge. But for my family and I, at the end of the day, we grew stronger and closer together.

Mike Ellison:

You just gave me two beautiful images, one of your children holding her hand, the other feeding her. Man. That's really beautiful. You have given us so much. Is there anything else that we didn't cover that you'd like to mention before we wrap up?

Rita Choula:

I think the only thing that I want to say is that we hear folks say it all the time, it's really important that for every caregiver, for every family journey, there really is that family journey. And that we really, as a society, both as individuals, as families, as providers, and communities, faith-based communities, we really have to understand the stresses and the strains, but the joys, the whole experience that come with family caregiving, the whole experience that comes with that journey that an individual and that caregiver, whether it's one person or 10 people, take. And that it looks very different depending on what community, depending on the cultural background, your race and ethnicity, and that we have to talk about it. Let's not assume that everybody is okay.

Rita Choula:

We want to celebrate where we can, but we also want to get real with the conversations about what people need. So that at the end of the day that individual that is being cared for has and is able to live with dignity, as well as the person that is caring for that individual. It doesn’t help that individual who is being cared for if that family member or friend is no longer here because they didn’t have the support they needed. And so, it’s a journey, it’s a balance but I'll end with something my mum told me. She said, “You know Rita, you have to be bold.” She said, “You have to ask for what you need, you have to speak up for yourself in life and you have to care. But in doing that you have to be bold.” And I call on all caregivers to be bold in their needs. Don’t feel that you have to carry all this on your own because you don’t.  There is help and you can find joy where you can, but in the challenges that you will indeed face, there is help and hope.

Mike Ellison:

Be bold, be hopeful. Rita this is so powerful. Thank you so much for sharing your story with us. Rita Choula is the Director of Caregiving for AARP Public Policy Institute. Thank you for joining us Rita.

Rita Choula:

Thank you.

Outro

We’ll leave a link in the show notes for all the resources Rita mentioned and more.

That’s it for today’s show.

If you like this episode, please let us know by emailing us at newspodcast@aarp.org

Big thanks to our news team producers, Colby Nelson and Danny Alarcon. Production assistant, Anita Fagbamila. Engineer, Julio Gonzales. Executive producer, Jason Young, and my co-hosts Bob Edwards and Wilma Consul. Become a subscriber on Spotify, Apple Podcast, Stitcher or other apps. And be sure to rate our show as well.

For an AARP Take on Today, I'm Mike Ellison. Thank you for listening.