[00:32:40] Dannelle: Hello and welcome to The Caregiving Soul. The Caregiving Soul podcast is a series of conversations about what it’s like to care for loved ones in need, how we can better navigate the relationship, and the physical, emotional, and logistical complications we encounter as partners in care.

[00:57:61] I’m your host, Dannelle LeBlanc.  

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[01:02:64] Today’s episode is very special. Not only because it’s the first official episode of this podcast, but also because I’ll be speaking with my sisters, Lena and Angela!  

[01:14:72] Our traditions of family caregiving can be difficult to recognize because they’re so deeply rooted in our daily lives. For many of us today, the strains and hard choices have intensified because human beings generally can expect to live longer and we need care over longer periods of time. We’re navigating a complex health care system, we often work more hours, and we do our best to keep up with other responsibilities and relationships.   

[01:46:41] So today my sisters and I will share what we learned from our mother, who cared for our grandmother, and how we can better recognize and support caregivers in general. 

[01:58:63] A quick introduction to my sisters: 

[02:01:69] Lena has worked in strategy and marketing for nearly 20 years, with a focus on data-driven decision-making, and innovation within organizations. She lives and works in Austin and currently serves as VP of Member Experience and Business Intelligence for Texas Medical Association.  

[02:24:22] Angela is an attorney and writer. She received her bachelor’s in Business Administration and a Doctorate of Jurisprudence from the University of Texas at Austin. She lives in the Dallas area with her nine-year-old son, Ronan.   

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[02:40:75] Welcome to Angela and Lena Banks!  

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[02:46:78] Dannelle: Hey everyone. I am so excited to have my hearts, my sisters, Angela and Lena, joining us today on The Caregiving Soul. Hey sisters! 

[02:59:14] Lena: Hey!  

[03:00:15] Angela: Hi! 

[03:01:78] Dannelle: I’m so glad you guys are here because so many people like us have a parent helping to care for a family member, and hearing about those types of stories, and the legacy that mom left for us, I think is really important and one of those universal experiences that a lot of people can relate to. So, thank you so much for being here. 

[03:26:57] Angela: Of course! 

[03:27:53] Lena: Thank you for having us.  

[03:29:90] Dannelle: Just to help our audience get to know you a little bit, I wanted to ask you guys about the three core values that you have and how they connect to witnessing mom’s caregiving experience with our grandmother, grandma Geneva. Angela let’s start with you. 

[03:49:49] Angela: Well, I’d say my three core values are to love God, to love myself, and to love other people. I feel that we’re here to learn how to grow in these areas and walk them out in a balanced way. And, watching mom in her life, in general, and also specifically caring for grandma, she was really a shining star when it came to loving God and loving other people, but wasn’t always balanced when it came to making sure that she was good. I’ve really tried to work on that particular value in my own life. 

[04:24:78] Dannelle: Absolutely. That was a lesson that I think was so important for each of us that in loving God and loving other people, that part of that trinity is loving ourselves. What about for you, Lena?  

[04:40:65] Lena: I think first I would probably say resilience is something that I really try and embody, having watched her over the years, as well as just a sense of loyalty, and some people might call it obligation, but I think it really was because she had a heart for family and for supporting people through some of the hardest parts of their lives. She was there for grandma, but we know that she had a heart to do that for many people. Finally, I would say that I agree, the thing that I think she taught me that she might not have fully realized herself was that you really do have to know your own limits, and understand how you fill your own cup before you can fill others, because it can become unsustainable really.  

[05:40:91] Dannelle: I’m so glad that you pointed out “knowing our own limits” because that’s directly tied to what Angela was talking about – loving ourselves is knowing our own limits. So many of those who are listening right now grew up with caregiving being so ingrained in our family relationships that it’s difficult to separate the role and responsibilities from our everyday lives.  

[06:13:02] I’m wondering what stands out for each of you when you think of mom’s experience as the primary caregiver for grandma?

[06:22:72] Lena: I think about honestly how lonely it probably was for her, despite having siblings, and family members, and many others, to your point – for some people I think there is just an unspoken obligation that you follow through with regardless of your own personal struggles, or limitations. And thinking about how much she sacrificed in order to maintain that caregiving relationship – without probably even thinking about it – feels like it would be a very lonely place to be. There weren’t many people who were doing the level of care without even thinking about it.  

[07:07:93] Dannelle: That’s so true. It was an unspoken obligation, and I think that unspoken obligation happens in so many different families where you have someone who just takes up the mantle, the role, the responsibility without much thought, making those sacrifices, and the result is that we’re often very lonely in that experience. How about for you, Angela? What stands out for you? 

[07:38:58] Angela: I would say her patience because she was very candid about the fact that grandma wasn’t always the easiest person to look after. It’s easy to be loving and patient when somebody is expressive in their love to you and patient with you, but that’s not always the case. And, it certainly isn’t always the case when you’re looking after someone who is in pain, having physical or emotional struggles. I was struck by her stamina, her physical and her emotional stamina.  

[08:08:55] One of my pet peeves is complaining. I think part of that is from watching her. She did so much, and she sacrificed so much, and she did it without complaining, and I’m always telling my son that no matter what you’re going through, and how hard or unfair it seems at times, there are people out there who are more deserving than you, who are kinder than you, who have endured worse than you, and have done it with a better attitude. And, I learned that watching mom. 

[08:38:97] Dannelle: And you know what? She had a lot to complain about. [Laughs] 

[08:41:74] Angela: Yeah.  

[08:43:82] Lena: She did.  

[08:45:61] Angela: I’ve often noticed that there is an inverse relationship between problems and complaining, and sometimes the people who have the most problems endure them with the most grace, and patience, and endurance. And that was well, certainly mom. 

[09:01:14] Dannelle: Absolutely it was, and there’s a difference between complaining and asking for help. 

[09:09:85] Angela: Absolutely. 

[09:10:60] Dannelle: That is really important because there were critical times when mom did ask for help and oftentimes did not receive the kind of help that she needed. Even though she was working as an older adult working a full-time job, remember all the times that she would drive that nine-hour drive, one way, to Louisiana to check on grandma in person. The level of stress and responsibility she carried was often unrecognized and underappreciated, which is unfortunately not an uncommon experience for many family caregivers. 

[09:54:96] What kind of support do you think was helpful, or might’ve been helpful, to mom in providing care for grandma, whether it was in person or long distance? And Angela I’ll come back to you. 

[10:11:82] Angela: I think to your point about asking for help – something that we can do to support is to ask people how they’re doing and not just surface level, surface answer exchange, but how they are truly feeling. And then just listen. I think this is helpful, not just because it gives them the space to vent and share their burdens, but because a lot of times caregivers may not actually know how they’re feeling, because they haven’t had the time, or the energy, or the focus, or even given themselves the permission to ask themselves how they’re feeling. But I think sometimes just giving them that space, so they can share that burden, I think as a gift we can give. 

[10:55:29] Dannelle: Oh, my gosh, yes. Giving ourselves permission to look at how we’re feeling and having someone ask us how we’re doing, and then just listen without any solutions, without trying to solve the problem, because sometimes the problem’s unsolvable. Sometimes it’s just a matter of degrees to which something can be helped, a situation can be helped, or a person can be helped. Just asking and listening helps give us permission to process those emotions. What about you Lena? What would you say? 

[11:37:57] Lena: I think that I kind of mirror that response. I think acknowledging what she was actually doing would have been helpful. I don’t think anybody ever could understand. We only have a glimpse of it, ourselves. A lot of folks probably don’t want to ask how the caregiver is doing, because then that means you’re then responsible to do something to help. 

[12:05:41] It’s a scary prospect to be in that position, and as the caregiver giving yourself permission to look at all you’re doing also is scary, I’m sure, because you’re not going to be able to stop moving. I think she knew she was the only one and I think she understood that it would fall on her. I think it would have been great if others would have acknowledged she was doing while she was doing it. It’s hard to do that. I can understand. 

[12:34:09] Dannelle: It is hard. It is hard when you’re a family member and you’re aware that there’s someone who’s going above and beyond to care for a vulnerable family member and that there’s possibly something that you could do, but you’re not really sure what it is. You’re not sure about your own bandwidth and capacity to help in whatever regard. 

[13:00:99] That is actually the case for us as primary family caregivers as well. We’re just as unsure often, just as uncertain, and oftentimes just as limited in our resources, time, energy, financial resources, and yet still move forward, keep moving. 

[13:24:55] Dannelle: What do you think the value of keeping these journals was for her? And what does it mean for each of you to have them now, in relation to caring for family. Lena, we’ll start with you. 

[13:42:03] Lena: I think probably going back to Angela’s point earlier, she was not a complainer. She did not tell you all about her problems, or what she had observed. The journals are a way, I think, for her to have done that without, what she probably felt was, burdening others with the information. I’m so grateful that she would always write things down. You’d have like a stream of consciousness, which is so valuable, because it shows you, she was feeling and thinking, and recognizing all of these things. She would put it on paper and I think it was probably cathartic for her, a way of managing a lot of the stress of the caregiving relationship. 

[14:34:85] It does teach me a lesson that journaling was probably essential to her maintaining her mental health and her ability to continue to move forward, doing that job.  

[14:47:18] Dannelle: Yes, all of that stress, and those experiences, and the frustration, need to go somewhere. For her, that somewhere was on paper. And I also recall that there was another family member, similar age that she was, who she talked with about some of the challenges of caring for grandma. This was something that we discovered after she passed, and in reading her journals, she talked about this family member and how helpful she was. The takeaway here is that all of that stress needs to go somewhere. For me, and for us, it may be writing it down in a journal, but for others it may be talking to someone who understands what it’s like, or joining a support group, whether it’s online, via social media or at your local faith-based organization. Finding some outlet for that is so important. And what about for you, Angela?  

[15:53:68] Angela: For myself, I think it was way too dense to get out, to have an outlet for those emotions. She carried a lot of burdens for a long time and she carried them largely alone. It was too much and it did take its toll on her. She paid a price for that. 

[16:08:92] I try and take the lessons that she wrote down and she told us, and I try my best to walk them out, and to love myself the way that she loved us, and to know that I do not need the consent, or support of other people, to take care of myself. I’ve learned from her experience to ask myself, not wait for someone to ask me, what I want, and what I need. If I need time alone, while I shut the outside world out to center myself I do that. And I’ve learned that the people who love you – they’ll understand, and they’ll support you, and they’ll want you to practice self-care. 

[16:46:09] Dannelle: Yes, the people who love us and who support us will understand when we practice self-care in whatever form that works for us. 

[16:57:23] Outside of caregiving, what else would you say defined who mom was and what she was passionate about, Lena? 

[17:07:10] Lena: I would just say people – she just never met anybody who wasn’t her best friend. “Oh, I was talking to this person. I was talking to this person”. You’re like, “okay, who is this person?” “Oh, I met him in the grocery line.” We were just standing in the parking lot and I was telling her, she just was such a kind hearted lover of people. There wasn’t a single person that she would ever just talk bad about, and she was always learning from people and letting people learn from her. That’s what I think about is – she was always so kind. I think a lot of people probably would think, “oh, she was like that with some people, but not with others”, but it was absolutely who she was at her core, to be kind to others and to give up herself.  

[17:56:02] Dannelle: Angela, what would you say?  

[17:58:44] Angela: Well, I love what Lena said. She was passionate about her family, but it wasn’t just her family. She was passionate about people in general. My favorite part about her journals is when she would write down encounters that she had had, where they had had a conversation. Like Lena said, she learned from people and she loved to pass on wisdom, and encouragement, and love to people. That just gave her so much fulfillment, and pleasure, and joy. 

[17:58:44] I think when it comes to caregiving, it is difficult and it is hard, but there is joy also to be found in serving others and knowing that because you were there you made someone’s life better. You helped them on the next leg of their journey. You helped them in their time here with dignity. There’s beauty in that even if you don’t get anything tangible back yourself.  

[18:53:46] She understood the power of showing love to people and she also understood the power of words. I cannot remember a time when she gossiped. I don’t remember a time when she tore someone down with her words. She was always trying to uplift and people in return loved her. And that is another reward from caregiving is you do receive, it may not be everyone you give to, but you do receive love back. It does come back to you. It may not come back from the person you gave to, but it will come back from others. 

[19:27:13] At her funeral, there were people who came up to us and told us how much our mother had meant to them. And it was small things. She really had a gift for connecting to people and making them feel special and making them feel loved. And she truly was the best person I think I’ve ever met. 

[19:46:29] Dannelle: She embodied joy, and love, and kindness in a way that has endured and will continue to endure in us, in hopefully the encounters with people that we meet, hopefully with anyone who’s listening right now.  

[20:07:62] And, I just want to thank my sisters again so much for joining us. Love you guys. 

[20:12:93] Lena: Love you too, Dana. 

[20:14:76] Angela: Love you too.  

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[20:18:57] Dannelle: Thanks for listening to my conversation with my sisters, Lena and Angela.  

[20:25:39] I’m hoping you have the opportunity to reflect on the value of caregiving in your own family and community, and how we can better support one another as fellow caregivers, family members, friends, advocates, and professionals.  

[20:42:49] In my conversation with my sisters, I found the following thoughts to be most powerful:  

[20:50:50] 1) The unspoken obligation of family caregiving happens so frequently, in so many different families, it can be hard to see. Many of us take on the responsibilities without much thought, and therefore we’re unlikely to be prepared for the challenges. 

[21:10:25] 2) Self-care is of the utmost importance for us and those we care for. We can’t rely on the consent or support of others to determine whether or not we do what’s necessary for our own wellbeing. Paying attention to our limits and setting (and re-setting) boundaries are a part of loving ourselves. Those limits and boundaries may be related to a specific task, our time, our emotions or physical health, or anything that requires the finite amount of energy we have.  

[21:56:17] Consider how the following actions could help address your needs as a care partner or care partners you may support:  

[22:03:72] 1) Try to listen without trying to solve the problem. The reason why this is an effective way to support a caregiver is because sometimes the problem may be unsolvable, but having someone just listen, makes room for us to find potential solutions on our own and to process our emotions in a more healthy way. 

[22:31:33] 2) Consider writing down thoughts and feelings in a journal, or even on random pieces of paper, without judgement. You can speak, or even yell the stress out loud, in private. Share with others who understand what it’s like in a support group. Any way that relieves the pressure before it overflows. Our stress needs to go somewhere. 

[23:04:10] 3) Acknowledge the work and positive difference that a caregiver makes, whether that’s you or someone else. 

[23:13:77] 4) It may be helpful to think about what tasks can be done differently to save time. 

[23:23:04] If you heard something that made a difference for you in this episode or would like to share your own tips related to this topic, let us know by visiting The Caregiving Soul page on EmpoweredUs.org where you can find actionable takeaways and resources supporting each episode as well as transcripts and any links mentioned.  

[23:49:83] The Caregiving Soul is an Empowered Us Original presented by Good Days, hosted by me, Dannelle LeBlanc. If you liked this episode, be sure to rate and subscribe to this show wherever you get your podcasts.  

[24:07:15] And remember, the right care includes care for you. [24:20:03]

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