The Caregiving Soul:

[00:00:19] Dannelle: As a licensed clinical social worker, Jodi Taub runs a private therapy practice where she specializes in working with clients and caregivers managing chronic illnesses and disabilities in both individual and group support settings. 

[00:00:37] Her personal experience as a patient with her own chronic health conditions revealed the clear need for both emotional and mental support when navigating illness or a caregiving partnership.  

[00:00:53] Welcome to The Caregiving Soul! I’m Dannelle LeBlanc . 

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[00:01:00] Jodi: So, some of the things that can happen as a caregiver is that they have their own experience, different from the patient. So, the patient may be going through their own feelings of living their healthcare condition, but a caregiver is loving and caring for someone who does, and so their lives then become a part of their loved one’s lives. And often what will happen is on top of their own responsibilities of living, of taking care of themselves and having their own lives, they now have this added responsibility to care for someone else. And it’s a tremendous role. 

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[00:01:36] And different people have different strengths and skillsets, so some caregivers may be really great at the action-oriented stuff of picking up groceries or taking you to doctor’s appointments, and, other people, their strengths may lie in providing emotional support. But I think at times for caregivers, depending on their own support system, they can feel burdened if they don’t have all the social supports that they need, or financial resources, to manage this. 

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[00:02:05] Dannelle: Right. And you point out that we have different skill sets, so it can be very helpful to be able to work with someone who can help identify those gaps, and then fill in where we may be lacking in the kind of resources that we need. 

[00:02:28] Jodi: Yes. 

[00:02:28] Dannelle: Jodi, can you talk a little bit about your experience working with people with chronic illness as well as the people who care for them? Can you give a little bit more specifics about the common mental and emotional healthcare needs we have? 

[00:02:45] Jodi: Absolutely. I think caregivers are used to giving of themselves before their own needs. And so, it can be really hard to think about prioritizing yourself ahead of the person that you love. And it’s really important for caregivers to recognize, and I’m gonna say this, you have to be able to take care of yourself in order to prioritize someone else. 

[00:03:08] And prioritizing yourself is caregiving for the people that you love. Because if you burn out and you’re overwhelmed, and then that leads to feeling resentful or angry or tired or hopeless, which can then lead to anxiety and depression, you’re not able to give all of yourself to your loved one. So, if you can recognize then it allows you to take that time for yourself, which gives you the flexibility to care for the people that we love. 

[00:03:37] And, it can be difficult for caregivers is they do find themselves burning out and feeling overwhelmed. And, I think it’s important to also recognize that there is an emotional component to this. There’s an emotional component to watching someone that you love suffer. Human suffering is really hard to watch and to love somebody because living with chronic healthcare conditions means that it’s chronic. These healthcare conditions ebb and flow, they may rollercoaster. There are times where people feel better, times when they don’t, times when there’s flares. It’s about management and it’s hard to watch someone else you love go through that. And often you can feel out of control cuz you just want them to feel better and sometimes they don’t. 

[00:04:24] So, I think that’s all the more reason that it’s important for caregivers to seek mental health support as well. And you can do this in many different ways. So you can seek therapy through individual therapy. There are support groups that are out there through patient organizations which provide peer support and connection, which help validate your experience to make you feel that you’re not alone. And utilizing some of these resources can help you to better care for your own emotional means.  

[00:04:58] Dannelle: Yes, absolutely. And all of those feelings are normal. 

[00:05:04] Jodi: A hundred percent! 

[00:05:06] Dannelle: [Laughs]  

[00:05:05] Jodi: [Laughs] It would be odd if you didn’t. [Laughs] 

[00:05:11] Dannelle: So, it is so important to seek therapy when possible. And I think that it’s even more important to get help to build internal skills and rituals that support our emotional wellbeing. You know, you talked about being in a support group or going to therapy as a way to validate our experiences and emotions as caregivers. So, that’s very important, but it’s also important to get to a place where we can nurture that internally, as well. 

[00:05:51] Jodi: That’s right. 

[00:05:52] Dannelle: Yes, and I, I’d love to hear about what skills or tools we can use independently to feel more grounded when there’s so much that can knock us off balance? 

[00:06:06] Jodi: Coping strategies are really important, and they are learned skills so everybody can learn coping strategies to help deal with some of these things. I think it’s important to learn how to establish boundaries. I think communication skills are important to learn how to talk to your loved one and be able to say no, and set those boundaries and limits and say, “You know what? I might not be able to do this today”, or, “Let’s take a look at our care team. Is there someone else who might be able to help us out a little bit?” And build upon the strengths of some of the other people around you.  

[00:06:42] And that’s okay to say that you might not be able to do something. And that helps your loved one to actually know, “Okay, wait a second, you know, I am kind of burning out this person I love and I don’t want to do that. There may be some other options in place.” Particularly when you’re feeling overwhelmed, to raise your hand and say, “Okay, I am overwhelmed. These are some things that I can do and I do need a break”. And that’s, that’s, okay.  

[00:07:07] And I think also looking at self-care. So, taking care of yourself, making sure that you’re still able to exercise and get good sleep and rest, and maintaining your own hobbies and interests, even though you may feel that you don’t have the time to do it, it’s important that you make sure that you do. And those can be done in very small ways. It might just be taking 15 minutes for a walk rather than saying, “Oh, well I can’t because I have to do all these things”. Well, okay, 15 minutes might not be that big of a deal, and it gives you a little bit of space to go outside and listen to a podcast or find something interesting that you want for yourself. I think those things are often important. 

[00:07:49] And then the other part is when we think about self-care, not just the individual self-care that we do, the things that we do alone, but maintaining community because often caregivers can feel alone and it’s really important that you continue to maintain relationships with your friends and family members and build community. 

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[00:08:10] Dannelle: Maintaining relationships as part of our self-care. I hadn’t thought about it from that perspective before, but that makes a lot of sense. And I’m so glad that you talked about maintaining interests and hobbies in the sense that we’re in a caregiving situation that looks different, but just because it can’t look the same doesn’t mean that we can’t do it at all. 

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[00:08:37] Jodi: That’s right. It’s breaking it down and simplifying it. It’s easy to say, well, I’ve got the medical bills piling up, or I have this appointment today, or I’ve gotta cook dinner and pick someone up. But to say, “Okay, well wait. It doesn’t need to take that much time. They’re small things that you do each day. 

[00:08:53] Dannelle: Yes, the small things make a huge difference, especially a caregiving situation that is going on on a daily basis, when, you know it’s gonna be an extended period of time where you’ve gotta figure out, okay, how am I, gonna live?  

[00:09:08] Jodi: That’s right. 

[00:09:08] Dannelle: What’s my life gonna look like? Jodi, even when we are in a good place emotionally, the responsibilities of managing another person’s day-to-day needs is overwhelming. How can focusing on balancing our routine help manage overwhelm? 

[00:09:29] Jodi: I’m really glad that you brought this subject up because I think [Laughs] this is one of the hardest parts of being a care partner is that there’s so many tasks involved and the tasks involved are not fun. So, it could be interfacing with the healthcare system, having to deal with insurance, could be dealing with bills, it’s a lot.  

[00:09:49] And so, I think it’s important to recognize that you need to balance your own routine and be aware of the things that you must do each day for yourself. So, that could be, you know, maintaining basic hygiene, maintaining your house and your home, maintaining your responsibilities for work and school and your relationships first, and making sure, okay, each day, these are the things I need to do for myself. I need to make sure that I exercise and I get good sleep, and I’m preparing meals and doing those things. And then taking the tasks and sort of breaking them apart and prioritizing what’s important. 

[00:10:25] There are days, as we know where all a sudden someone could have a health flare and you might need to go to the emergency room. And so I think it’s really important to remind yourself that you’re not gonna get to everything all in one day. And sometimes there’s certain tasks that you feel that you’re able to handle and there may be other tasks that day that you can’t.  

[00:10:45] So, prioritize the tasks that you know that you can emotionally handle and try not to shame yourself and feel guilty that you didn’t get to something because you’re not gonna get to everything. That’s just part of how this works. And if you shame yourself or make yourself feel guilty about it, then it can create this negative thought spiral, which we really want to avoid. 

[00:11:11] Dannelle: Yes! You specialize in cognitive behavioral therapy. Can you define that for us and how this technique can help people in caregiving situations maintain positive relationships? 

[00:11:27] Jodi: Basically, what cognitive behavioral therapy [CBT] is, is it’s a type of psychotherapy which helps us to work through negative thought patterns about ourselves and others, and to work through the negative thought patterns and recognize that our thoughts aren’t always the reality of our feelings. So, it’s changing your thoughts and your perceptions for how you see the world, and then strategizing and using behaviors that are more productive in terms of how to cope with life stressors. 

[00:12:02] So, the reason why CBT can be very helpful for individuals who are caregivers and patients is that it’s easy when you’re dealing with medical trauma and you’re dealing with the ups and downs of the chronicity of chronic healthcare conditions. 

[00:12:18] It’s easy to go into a negative thought spiral: “Oh my gosh, I’m never gonna get better”, (those are patient thoughts). Or a negative thought might be for the caregiver, “I’m never gonna get everything done. I’m feeling really overwhelmed. I can’t keep up with all of this”. So, CBT helps you to organize, in a structured way, how to work through those thoughts so that they don’t become pervasive, and then impact the way that you feel and what you’re doing. 

[00:12:45] Dannelle: So, tell us more about the difference between that type of therapy and practicing mindfulness? 

[00:12:52] Jodi: So, what CBT does is there’s particular strategies that help you to work through the negative thought cycle, and then also coping strategies to deal with how you’re feeling in a moment. So, I break it down into two parts. One is dealing with the thoughts, and then the second part is dealing with actionable steps when you’re feeling certain emotions.  

[00:13:18] For example, if you have an automatic thought, and so the automatic thought may be, “I’m never gonna get all of these things done”. An example of a CBT skill set would be to write down the automatic thought and then write all the counters to that thought. So it may be, “I always get things done. I have a lot on my plate today. Just because it’s not getting done today doesn’t mean it won’t ever get done. And so, what you’re doing through the CBT skills is then you’re retraining that negative thought pattern. 

[00:13:52] It’s almost in the same way – [Music] I always describe it as when you hear a song, so if you hear a song played and it always reminds you of the moment, so it might remind you of that moment in high school or that moment in 2007 [Laughs] and every time you hear that song, the way in which our brain works is a certain feeling or a certain experience, we then track it. And so, what we wanna do is change that so that every time you are triggered by that particular feeling or thought, that doesn’t become the truth. And if you start to work and fight through that thought pattern, it actually changes the way in which your brain replicates that memory and that leads to not feeling badly.  

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[00:14:35] The other part is taking actionable steps. So, in the moment if we’re having a lot of negative feelings and thoughts, often we need to do something that’s actually task oriented, so to get our mind off of the feelings. And so, in doing tasks, it may be that you need to do something physical. Often exercise can be really helpful. And when I say exercise, I mean movement. So, it could be just walking outside for five minutes. It could be doing your laundry. 

[00:15:03] The task mode network – what it does is it focuses the brain on other things that we need to do, and it stops the analytical thought spiral. And that’s why people often feel better when they’re doing something that is task oriented. And for some of us it may be watching a movie or listening to music just to get ourselves to calm down. Mindfulness is a strategy and a way in which you can utilize thinking about your thoughts and feelings in a different way. So, some of the mindfulness practices can be used in conjunction with cognitive behavioral therapy as a tool to help manage our thoughts and our feelings. 

[00:15:48] Dannelle: Okay. That makes a lot of sense.  

[00:15:52] Jodi: And not all coping skills are a one size fits all. Some people will utilize different strategies that work better for them depending on their circumstance, so use what’s right for you. 

[00:16:04] Dannelle: Yes. Okay, so what else are we missing here as part of this conversation that’s important for those who are helping to care for a loved one with chronic illness or a disability? 

[00:16:21] Jodi: I think it’s important for caregivers to try to share their experience with others and to explain to other people what they may need. Because often I think [Music] people don’t understand the tremendous responsibility that they have, and sometimes they feel like people just don’t get it, and there’s a way to bridge that by explaining to others and also asking for what you need.  

[00:16:44] Sometimes you go to a friend and you’re just looking to vent. You’re not looking for them to find the solution. You are the expert [Laughs] in how to caregive for your loved one, and your friend might be trying to fix it for you, and they really don’t understand the really complicated medical system, or they don’t understand the way in which your loved one experiences their disease and they’re trying to help you, but it may not be helpful.  

[00:17:09] So, I think it’s good to find ways in which to communicate to your loved ones what you need. And it may just be saying, “You know what? I don’t wanna talk about this, but I would love to go see a movie with you”. Or, “I’d love to talk about something else in my life”. Or, “I do need to process this”. Or, “Can I run this by you because you’re someone who gets it”. 

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[00:17:29] Dannelle: Right, absolutely. That is so key because the lack of that is what directly leads us to being isolated. 

[00:17:38] Jodi: That’s right, and loneliness. And I think one of the major difficult life experiences that comes with caregiving is people often feel isolated and lonely, that other people just don’t get it. And so, finding ways in which to share that with others so that they can understand and validate your experience, cuz that’s important for relationships. 

[00:17:59] Dannelle: Absolutely. We absolutely need that validation.  

[00:18:04] Thank you so much for joining us today on The Caregiving Soul. It’s been a pleasure talking with you. I’ve learned so much! 

[00:18:10] Jodi: Oh, that’s so great. I’m so glad that we were able to do this. 

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[00:18:18] Dannelle: Thank you for joining our conversation with Jodi Taub. Something that stood out to me in particular was the perspective Jodi shared about cultivating community as a form of self-care. This is so important because even when we practice small ways to fill our own cup, surrounding ourselves with like-minded individuals who lift us up and understand our experience is so validating, and a way to manage potential burnout.  

[00:18:54] Check out our show notes to connect with and follow Jodi. Every episode of The Caregiving Soul has a page on empoweredus.org where you can find the extended show notes, including tips and takeaways, transcripts, and relevant resource links.  

[00:19:12] For additional bonus content from this episode, and to connect with us, be sure to follow the Empowered Us social channels on Instagram @empoweredusnetwork and Twitter @empowereduspod. 

[00:19:26] 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 the show wherever you get your podcasts. 

[00:19:41] And remember, the right care includes care for you. 

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