The Caregiving Soul:

[00:00:41] Dannelle: With over 10 years of medical experience in pediatrics, Dr. Nicole Rochester found herself on the other side of the doctor-patient relationship as a caregiver for her father. From this perspective, even as an experienced physician, Dr. Nicole began to encounter the difficulties of coordinating care and advocating on her father’s behalf. She knew she wasn’t alone in this struggle.  

[00:01:14] Welcome to The Caregiving Soul. I’m Danelle LeBlanc. 

[00:01:21] [Music Ends] 

[00:01:21] Dr. Rochester: There were things about my dad that you would only really notice if you knew him. So, he may have passed with flying colors, you know, just as an example, some of those kind of cursory dementia screening tests. He could tell you what day it was and what year it was and who the president was. That wasn’t an issue. But my sisters and I saw that this guy who was obsessed with electronics could no longer figure out how to go from DVD back to his TV, like that was not normal for my dad. So, a lot of it was just the frustration with trying to communicate things that my sisters and I were seeing being blown off, being ignored. 

[00:02:00] So, it was like a huge wakeup call when I started accompanying my dad to his medical appointments and multiple hospital stays and rehab stays, like he saw the whole gamut of the healthcare system. And I saw it from both sides because I already knew the complexities, to some extent, of the healthcare system, and I could appreciate that. 

[00:02:21] The visits are short, the reimbursement is low, they don’t have the time to really spend with patients the way that most of them want. I’m, I’m looking at it from the doctor’s point of view, but also as his daughter, it wasn’t until I started declaring or sharing that I was a doctor that all of a sudden, they wanted to talk to me. 

[00:02:41] And that’s the whole reason why I ended up leaving medicine and launching my company, is because I saw the privilege and the advantage that I had as a fellow healthcare professional when suddenly my viewpoint and my opinion was deemed important once they knew what I did for a living. As a pediatrician, by nature, I have to talk to family members, like we always talk to parents, we talk to other family members, if necessary, we may talk to teachers. We’re used to gathering information from a variety of sources, and pediatrics is a team sport, and so that was my perspective, and I guess I just naively assumed that that’s how everybody in medicine functioned, but that was not the case, at least not for my father. 

[00:03:29] Dannelle: Oh my gosh. Okay, so I have talked to you so many different times and this is just now sinking in for me, Dr. Nicole. [Laughs] That experience as a pediatrician and talking to different family members is unique within the healthcare system. Is that what you’re saying? 

[00:03:53] Dr. Rochester: As a model, yes, and I mean, I’m always saying like every doctor should be like a pediatrician. Now, of course, I’m a little biased, but yeah, that’s how we practice medicine, and mostly out of necessity. But because of that, we appreciate the value of not only getting the story from the 5-year-old or the 15-year-old, or even the 20-year-old, but then when it’s appropriate, getting the story from the parent or sometimes the teacher or the grandma or the babysitter. Yeah, that’s not necessarily valued for many reasons. 

[00:04:25] And again, I am a doctor, And I acknowledge the limitations and the broken system and all of that. At the same time, these are real lives that doctors are taking care of and I am still on a mission to like figure out a way to still provide amazing medical care despite the broken system because I feel like we can’t keep using that as an excuse. 

[00:04:51] Dannelle: Right. What else have you identified that is especially challenging when caring for a parent? 

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[00:04:59] Dr. Rochester: One of the most difficult things I think for adult children in caring for parents is watching your hero decline. You know, in my case it was my dad. I consider myself a daddy’s girl, and my dad was a strong man, pretty large build. He was a former police officer. Everything about him just was this man of strength and so to watch him, like physically decline and emotionally decline cuz of course as he got sicker, you know, that has an emotional impact, a psychological impact. So, I think all of the adult children that I’ve spoken with that have been in this situation, whether it’s their mom, their dad, their grandparent, just watching that person decline and feeling relatively helpless I think is a huge challenge.  

[00:05:49] [Music Ends] 

[00:05:49] And then there are some natural conflicts that come up when you are caring for a parent. There’s this whole role reversal. In many cases you have to kind of become sometimes more of the authoritarian in the relationship. And so, there’s this struggle for many with the parent trying to maintain their independence, which is valid, and then the adult child noticing gaps and noticing things that need to be improved or changed and trying to step in and keep their parents safe. But that often creates some tension in the relationship, especially if the relationship was already challenged to begin with. 

[00:06:28] I was just on a Facebook Live where we talked about caregiving and one of the guests had a very strained relationship. His parent was estranged from him for years, and now he’s taking care of that parent. So, those old parent child relationships often come up. And then there’s the issues with siblings. You know, sometimes you may have siblings who step up to the plate. Thank goodness that was my case. Other times you may have siblings who are not doing a thing, but yet are critical of what you are doing, the person who stepped up as the caregiver. So, there’s just a lot to manage with regard to the relationship on top of the health challenges, the financial challenges, all those other things that go along with caregiving. 

[00:07:14] Dannelle: Absolutely. All those are very common in adult child and parent relationships that impact our ability to advocate and to provide care. We don’t just walk into a caregiving situation with a clean slate. Even if you have a good relationship with your parent, there’s existing grooves in how you communicate with one another, and how we relate to one another. So, when we put caregiving on top of that, it’s just, it’s a lot. It’s a lot. So, how do you help family caregivers to better navigate the process of finding effective care? 

[00:08:07] Dr. Rochester: So, as a professional health advocate, what we do at my company is really a variety of things that all support patients and their family caregivers. And so, it could be around helping family members and the patient understand their medical diagnoses, helping them coordinate the care. So, we don’t provide medical advice as a health advocate, but because I am a doctor and knowledgeable outside of just my specialty of pediatrics, I can review medical documentation and translate it into lay terms, which is another challenge that I think a lot of family caregivers have. 

[00:08:47] So, translating and helping them understand this is what this report means, this is what these labs mean, this is what the doctor was really saying when he said this. And really giving them the information that they need so that they can make informed decisions. And so, that may be doing research for new therapies around a particular diagnosis, that may be doing research to help them choose healthcare providers who have a track record, a known track record at excelling in managing certain conditions.  

[00:09:18] Particularly like if it’s a rare condition, that may mean helping them understand their family members’ health insurance and their benefits so that they can avoid, as much as possible, surprise medical bills. Helping them understand their coverage so that they can make strategic choices as it results to their family members’ care. 

[00:09:38] It can involve researching long-term care facilities and helping them to make decisions about, maybe their family member isn’t able to stay at home anymore. Maybe they need to look at some alternative arrangements, and so, helping to vet those facilities. And then for like acutely ill and hospitalized patients, it often involves a lot of hands on work being that communication bridge [Music] between the family member and the medical team and making sure that they understand what’s going on, making sure that they’re up to date with the information so that they can make those very important decisions.  

[00:10:17] [Music Ends] 

[00:10:17] Dannelle: That’s a lot. And, one of the things that I love about your work and how you empower family caregivers is giving permission to be high maintenance and high maintenance is a good thing when it comes to caregiving. Not only is it a good thing, but it’s necessary.  

[00:10:44] Dr. Rochester: It is.  

[00:10:45] Dannelle: So, for many of us, we have to kinda switch our mindset of being in a passive role when interacting with professionals within the healthcare system, because of respect for their experience and their training and their knowledge, by recognizing that we’re also at the table, we have a seat at the table for a reason. 

[00:11:15] Dr. Rochester: Yes. 

[00:11:16] Dannelle: Dr. Nicole, if I’m a family caregiver, where do I start? 

[00:11:23] Dr. Rochester: That’s a great question. It depends honestly on what the issue is, but I have a system that I use when I’m working with clients and I have a system that I recommend to even people who may never work with a health advocate, because my goal, even when I’m working with clients, is to get them to the point where they feel comfortable doing this on their own. I’m all about education, empowerment, teaching you how to fish, and then you can go off and do this on your own. 

[00:11:53] So, it’s called the GPS system and I think every family caregiver needs to do these three things. The first is the G is for gather information. So, it is so important as a family caregiver to become comfortable asking questions. You mentioned earlier Dannelle, about this like respectability and you’re right, a lot of times family caregivers and even their loved ones who are sick don’t want to quote unquote bother the doctor, and so they will hold on to questions. They’ll say, “Oh, I don’t wanna bother them”, or “I know they’re busy”, or “I know they have another patient”. 

[00:12:27] We have to ask questions as family caregivers. It’s one of the most important communication tools. It’s one of the ways that you can not only increase your own knowledge and understanding, but sometimes your question will stop a doctor or another healthcare provider in their trackcs and make them realize that they’ve been rushing and make them pause and think about something. They may come up with something that they hadn’t thought about before. So, gathering information and just becoming knowledgeable about your family member’s different illnesses, their diagnoses, their medications that they take, all of that is incredibly important.  

[00:13:07] The P is to position yourself as an expert. So, you brought this up earlier too, when, you know, you were saying that yes, the doctor is the expert, right? Yes. I went to college. I went to four years of medical school, three more years of residency and 20 plus years now of practice. I’m an expert. However, the caregiver is also an expert. So, the family caregiver needs to be comfortable positioning themselves as the expert, standing in that truth and in that power, trusting their gut and acknowledging that yes, you do know a lot of things and no, you may not be a nurse, you may not be a doctor, but you are still an expert for your family member. 

[00:13:50] And then the S is to speak up and I mean it, we have to speak up. And it doesn’t mean in a disrespectful way, it doesn’t mean in a controversial or antagonistic way. But going back to that gut feeling, so many times family caregivers know in their gut that something’s wrong, and it may be something’s wrong with their family member. Sometimes it may be that something’s wrong with the care. They may notice, hmm that medication looks a little different today. Those little things, like you may be the one to prevent or catch a medication error in your family member or loved one. 

[00:14:25] So, when you are concerned about something, you’re not gonna hurt anyone by speaking up. If you’re wrong, okay great. You’ve brought up a concern. Your concern gets allayed, but in many cases you’re gonna be right. And so, that three-part system of gathering information, positioning yourself as the expert, and then speaking up and advocating for your family member, or that’s like the secret sauce, to me, particularly when you’re managing their medical care. 

[00:14:54] Dannelle: And even if we’re wrong, we’re still learning something so the idea is accepting that it’s gonna be uncomfortable, but we do that anyway because it’s absolutely necessary to gather the information, position ourselves, and to speak up. 

[00:15:13] There’s been a lot that’s gone on in the last few years, what else have you learned? What’s come up over the last three years that that you’ve encountered? 

[00:15:25] Dr. Rochester: Ooh, well the last three years gave been tumultuous to say the least. I mean, I guess the two big things I could touch on are Covid and, you know, this kind of racial reckoning that our country is still in the middle of. So, in regard to Covid and family caregivers, I think the biggest lesson is that family caregivers are not visitors. 

[00:15:50] And I was heartbroken, Dannelle, just truly heartbroken, and honestly thankful. This sounds really crazy, but thankful that my dad had already passed away prior to Covid, because what I heard about from friends and other family members and clients about the conditions in the hospitals, in the skilled nursing facilities or nursing homes, and I understand, again, I understand this was a public health emergency. We knew very little about Covid and there were a lot of deaths early on, but the way that family caregivers were literally barred from being at their loved one’s bedside, we will never know the magnitude of the extra deaths that that caused. We’ll never know. 

[00:16:38] For all the reasons that you and I have been talking about – we’ve talked about the fact that we are the eyes and the ears when everybody else has left the room. That family caregiver is still there, and we are the ones who know very intimately what’s normal and what’s not normal for our family members. And so, I cannot imagine at your most vulnerable point, people being extremely ill and not having that advocate, that family member at the bedside. Not only are we helpful for our family members, but family caregivers help out the medical team. 

[00:17:13] We, we definitely learned, and I hope that the medical professionals learned the true value of having that family member to corroborate the history, to fill in those gaps. [Music] You know, when you’re really sick or critically ill, you can’t even provide your own medical history. And so not having that, it literally gives me chills when I think about it. In terms of the whole wakeup call in America with regard to the treatment of black and brown people, and not just on the police stops, but also in our medical system, I have had the privilege of doing a lot of public speaking around health disparities and the ties to structural racism and bias, and a lot of consulting with healthcare organizations around health equity. 

[00:18:01] And so my, one of my missions in 2023 is to train lay people in the community, to be their own advocates and to really give them some of the tools that we’ve talked about today so that, cuz not everybody’s gonna be able to hire a professional health advocate like myself, and so I have to make sure that the people who need it the most have access to this knowledge and information. [Music Ends] So, I’m really excited about looking for some collaborative partnerships and strategic partnerships this year so that we can begin empowering entire communities so that they can advocate effectively for themselves and their loved ones. 

[00:18:46] Dannelle: Absolutely. So, we are care partners, not just for our loved one, but for the healthcare system itself. And in order to do that effectively, we need equitable access to quality care. And what I love about your work, in emphasizing that, is that this is an opportunity for us to redefine how those conversations take place, that health equity is something that impacts all of us. 

[00:19:33] It impacts all of us with a ripple effect. And that how we empower and treat those with the fewest resources, is a reflection of our values as a society. And I do believe that for all of us, we share the value of love and care for people who need help, who are suffering or are in need. That is a shared value. And so, capitalizing on that, I think is one way to open up the conversation to be something that is empowering for everyone. 

[00:20:25] Dr. Rochester: I agree. I, that was so beautifully said, Dannelle. Absolutely. 

[00:20:30] Dannelle: It’s so important that we’re able to communicate the need and the importance, in a way that allows people to feel welcome in the conversation, because we can’t come up with solutions together if you have one side that feels defensive, because again, because of those previous patterns of how these conversations take place, we have to decide together that we’re gonna find a different way. 

[00:21:04] Dr. Rochester: Everybody deserves high quality care, not just the quote unquote VIPs of the world, but everyone. And so, that is a huge passion of mine.  

[00:21:15] Dannelle: Wonderful. It’s been so good to see you, and I just wanna thank you so much for the work that you do as a professional health advocate, and I look forward to seeing you again soon. 

[00:21:32] [Music] 

[00:21:35] As Dr. Nicole mentions, its standard practice in pediatrics to gain context from family members about a child’s healthcare needs. Unfortunately, this practice of integrating family caregivers, as a matter of course, in professional care settings, too often doesn’t happen when we care for an older adult. To me, this reveals the missing link. Caregivers are the linchpin in communication and advocating for our person. 

[00:22:09] If you’d like to connect with and follow Dr. Nicole on social media or learn more about her work as a health advocate, check out our show notes. 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. 

[00:22:35] 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.  

[00:22:51] 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.  

[00:23:07] And remember, the right care includes care for you. 

[00:23:17] [Music Ends] 

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