Webinar | Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers

July 15, 2025

Caring for a loved one with bladder cancer is an incredible act of love—but it can also be overwhelming, exhausting, and isolating. Reena Cherry, M.S., PA-C, from UC San Diego Health, talks specifically about the unique challenges faced by bladder cancer caregivers.

Year: 2025

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Part 1. Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers

Transcript (PDF)

Part 2. Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers

Transcript (PDF)

Part 3. Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers

Transcript (PDF)

Part 4. Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers Q&A

Transcript (PDF)

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Full Transcript on Suffering in Silence – Overcoming the Hidden Struggles of Bladder Cancer Caregivers

Patricia Rios:  

Today’s topic is Suffering in Silence- Overcoming the Hidden Struggles of Bladder Cancer Caregivers. Caring for a loved one with bladder cancer is an incredible act of love, but it can also be overwhelming, exhausting, and isolating. Caregivers spend hours each day helping with medical appointments, treatments, and daily tests. Yet, their struggles often go unnoticed. Many feel guilty about their own stress and emotions, leading them to suffer in silence.

BCAN is delighted to have Physician Assistant Ms. Reena Cherry, senior physician assistant from UC San Diego Health, who will highlight her research about the unique challenges faced by bladder cancer caregivers. Reena has a distinguished career spanning 24 years serving the oncology community. She has worked as an expert clinician at two of the nation’s most prestigious healthcare institutions, MD Anderson Cancer Center in Houston Texas, and UC San Diego Health, in her beloved hometown. With a deep commitment to compassionate patient care, Reena also dedicates her time to supporting the needs of informal caregivers who are an essential component of our healthcare system. Reena received her Bachelor of Science degree in Psychology from Spelman College in Atlanta, Georgia, and her Master of Science degree in physician assistant studies at Baylor College of Medicine in Houston, Texas. I am now going to turn the webinar over to Reena, who will highlight why caregiving can feel so difficult, the emotional toll it takes, and suggest practical ways to find support and balance. Reena, thank you for joining us.

Reena Cherry:

First, I want to say thank you, thank you, to BCAN for inviting me to speak this evening and for just showing…um, creating a space really for us to talk about caregiving. Um, I’m just so excited that BCAN found value in this topic. It is, I’m very passionate about it as I hope you’ll see, um, but our caregivers tend not to have a safe space to talk about these things and so I just am so appreciative that BCAN has given us a platform to do this. Um, and I also want to thank all of you so thank you for being here together on this webinar, and, um, I hope it’s something that I have to say tonight will be of value to you.

As Patricia said, I’ve been an oncology PA for over 25 years, and, um, I’ve worked at fantastic organizations and we’ve done an extraordinary job supporting patients, um, but over the years, I really did see a huge void in our support and really acknowledgement of caregivers, and it just kept gnawing at me that there were these um, extraordinary people who, in many ways, are the backbone of bladder cancer and backbone of healthcare in general, and we weren’t acknowledging them or even trying to figure out how we could support them better. So, this talk was really born out of a desire to shed some light on the extraordinary work that caregivers do, um, and also start to talk about some of the ways that caregivers struggle, and almost across the board, all caregivers do struggle. So, um, I’ll start today… well what we’re going to do is I’ll give you some information about caregivers in the United States, so I’ll share some data with you about that. We’re going to dig into what exactly caregivers are doing on a daily basis to support our bladder cancer patients, I’ll talk to you about why caregivers tend to struggle. Um, so we’ll get into some of the feelings and emotions behind caregiving, and then I’ll talk about ways we can help.

So, to start, I’m going to share a parable with you. Here goes. So there are these two young fish swimming along, when they meet an older fish swimming in the other direction, who nods at the fish and says, “Morning boys, how’s the water?” And the two young fish keeps swimming along until finally one of the fish turns to the other one and says, “What the heck is water?” Now the meaning behind the parable is this,

Reena Cherry:

Sometimes the most obvious important realities are the hardest to see and talk about. And when I heard this, I immediately thought about caregiving. We all know caregivers. We have a peripheral idea of what it is they do to support our patients, but this is a very difficult topic for us to talk about.

And one of the reasons it is so difficult is that in order to have an authentic conversation about caregiving, it requires that we acknowledge certain feelings and thoughts that we have, and it requires that we acknowledge certain physical and clinical realities about our loved ones that we’re supporting that we wish were not so. And in order to talk about those things, we have to move into a vulnerable space. And I’ve learned over the years that most human beings avoid feeling vulnerable at almost all costs. And since the topic of caregiving requires that we be vulnerable, we tend to sidestep it. So, again today, I’m going to try to help us peel back those layers so that we can create a safe space for us to talk more openly about this important subject.

Reena Cherry:

So we’ll start with a definition of a caregiver. A caregiver is a person who tends to the needs of another person with short or long-term limitations due to illness, injury, or disability.

Reena Cherry:

And caregivers are our… you know there are many times significant others. They’re sisters, brothers, aunts, uncles. Um, parents, um, are having to take care of one another. Um, children are having to take care of their parents, et cetera. Friends also provide a lot of support and care for our bladder cancer patients.

Reena Cherry:

Now, when I was doing research about caregivers, I had the fortune of stumbling upon the National Alliance, um, for Caregiving. The National Alliance for Caregiving is a coalition of non-profit organizations that came together in about um, 1996 to amass some of the most accurate data that we have about caregivers in the United States, and also in an effort to amass some of the best resources and research opportunities we have to continue to study and determine ways that we can support our caregivers.

Now, the National Alliance for Caregiving partners with AARP, and they conduct a survey once every five years or so. So, their most recent survey was conducted in 2020, and they compare that data against, uh, the survey they did in 2015. Now, as an aside, I’ve actually reached out to the National Alliance for Caregiving, and they are um, assimilating data right now, um, about where caregiving stands in 2025, and we should have that information available to us in 2026. So, hopefully, I’ll be able to present that information to you early next year. But as of 2020, here were the highlights of their research. Number one, there were approximately 53 million caregivers in the United States and that was up from 43 million caregivers in 2015. So, caregiving is definitely on the rise.

Number two, 24% of caregivers reported that they support more than one patient. So I want us to be um, clear. Most of us, when we think about caregivers, we assume a one-to-one ratio, and many times that’s not the case. There are many caregivers who are supporting more than one patient, which is an enormous undertaking, and I hope you understand how enormous that is um, in a little bit. But, um, many caregivers are supporting multiple patients. Third, about 45% of caregivers reported a financial impact from caregiving. So, there are many, many caregivers who have to reduce their footprint in the workforce or leave the workforce entirely in order to absorb their caregiving responsibilities. And that’s obviously a significant impact for the individual caregiver, but it also impacts their families. Um, and so, this is a significant uh, comes a lot of times uh caregiving comes at a significant financial cost to the caregiver. And last, the data showed that as of 2020, 61% of our caregivers in the United States were women versus 39% who are men. Those are some of the big highlights from the 2020 survey.

Reena Cherry:

All right, so when we look at caregivers in action… We’re obviously focused on our bladder cancer patients, but I wanted to give you a scope of where caregivers come into play um, across the medical landscape. So, um, certainly we have caregivers who are providing support um, before and after surgery, during radiation, and before and after chemotherapy for our oncology patients. However, caregivers are also significantly in need when um, we start to talk about the dementia space, that is an ever-growing um, population of people, unfortunately, and caregivers are really um, really having to step up to the plate to support those patients.

Certainly patients who suffer from end-stage diabetes, um, end-stage renal disease, um, there are patients who have significant cardiac issues, end-stage congestive heart failure, patients who have had stroke or um traumatic brain injury, and also you know, patients who are suffering from a neurological, a neurologic disorder such as Parkinson’s, so this is not an inclusive list but certainly gives us a broad perspective of where caregivers are supporting patients across the board.

With respect to our bladder cancer patients, caregivers are at the forefront and they’re with the patient from the very beginning of this diagnosis. So certainly with patients who are undergoing um, their initial cystoscopies and bladder biopsies. Um, we have caregivers who are supporting patients throughout BCG installations, which as we all know can last for weeks to months. Um, certainly patients who need um, surgery and/or radiation to treat their bladder cancer, caregivers are obviously in play. And then I also wanted to mention little things that we tend to overlook um, where caregivers are a tremendous support. So many of our patients have Foley catheters. We have many patients who have ostomies. We have many patients who have percutaneous nephrostomy tubes or tubes that go into the kidney and drain the kidney. These are all things that need to be managed and monitored, and caregivers are doing this every single day.

Um, I would be remiss if I did not mention emergency room visits. So, emergency room visits happen frequently. Obviously, the, you know, our patients who are acutely ill sometimes have multiple ER visits. And just to put a finer point on it, an ER visit can be uh, multiple hours. Sometimes we have patients who sit in the ER for six to eight hours at a time, uh, and ERs across the country are packed. So, there are patients who spend days in the ER before they are given a bed and admitted into the hospital. And we should also be present to the fact that caregivers, you know their, the intensity of care they’re providing increases in the days leading up to that ER visit. So, most patients become ill at least two to three days before they end up in the emergency room and the caregiver is having to care for the patient during that time and make decisions about, “Is it appropriate to take to the ER? When do I take to the ER? What are the symptoms,” calling the clinical care team.

So, the intensity of the work they do rises, the patient gets to the ER, and then that care continues throughout the emergency room stay, throughout that inpatient stay, and then in the days to weeks afterwards. So ER visits is huge. Um, certainly, patients who are, you know, more acutely ill who require support in a skilled nursing facility, um, caregivers are still very much involved. And then unfortunately for patients who need hospice or at the end of life, that is one of the most, uh, physically intense and emotionally intense periods of time for caregivers. This gives us, I hope, a better idea of what our bladder cancer caregivers are doing for our patients.

Reena Cherry:

Okay, so when we talk about and start to peel back the layers of what a caregiver does on a daily basis, I wanted to share with you the way clinicians initially evaluate how well a patient is doing.

So, we typically assess something called activities of daily living or ADLs and these are basic, um, life tasks that everyone has to do in order to take care of themselves. So, ADLs include being able to stand up from a seated position, being able to walk from point A to point B, being able to feed yourself, being able to dress yourself, being able to toilet yourself and take a shower. These are considered ADLs, and I think everybody is pretty clear that caregivers are supporting patients in all of these ways.

Reena Cherry:

However, there’s another category of, um, support, um, called instrumental activities of daily living or IADLs. And I was thrilled to see this category bubble up to the surface because these are a lot of the hidden tasks that caregivers are doing that we are not talking about. So instrumental activities of daily living are more complex tasks. These are tasks that require a lot of follow-up, they require organization and critical thinking skills, and caregivers are in the background juggling all of these.

So, um, I’ll quickly go through the list here with you. Certainly, managing finances is a big one. A lot of patients need help paying their bills, rent, mortgage, um, any other financial endeavors they’re involved in. When they become acutely ill, the caregiver typically steps up to assist. Transportation is a big one, and I’ve highlighted that here for you. Patients who require chemotherapy, infusion therapy, are going back and forth to their outpatient clinic to have these procedures done, and the caregiver is either driving the patient there and back or organizing, um, transportation for the patient. So, transportation tends to be huge, and it tends to become more intense depending, depending on what treatment, um, option a patient is moving through. Certainly shopping, meal prep, house cleaning, those are all involved or categorized under instrumental activities of daily living.

Then the last two, I want to touch on communication because this is actually a big deal and I don’t hear enough people talking about this caregiving task. So, communication is an enormous responsibility for caregivers, and it has become more enormous over the years. So, 30 or 40 years ago, we had a primary care-based healthcare system, hmmm, where one patient would have one primary care provider and that PCP was managing probably 85 to 90% of that patient’s medical issues and every now and then that PCP might have to refer out to a specialist. Well, now the healthcare landscape has evolved into a multidisciplinary platform. So now, one patient very likely has four to five plus active specialists involved in their care. So now the caregiver is not just coordinating care with one PCP, they’re coordinating care with every single specialist that patient has. And those specialists have teams of people that help them. So, the caregiver is communicating with a nurse, an advanced practice provider for every single specialist.

In addition, uh, caregivers have the pleasure of also having to negotiate with insurance companies, um,  and that is an entirely different talk in and of itself, but insurance has become an enormous burden for everyone, clinicians and caregivers. Um, but caregivers are having to make a lot of phone calls to try to get their loved ones covered for services, et cetera. So, communication is a broad umbrella, but I wanted to just take a moment to really dig into this because it is one of the tasks that caregivers take on that we’re really not talking enough about. And then as far as managing medications…, um, patients are on a lot of medications. Many patients were on a lot of medications before they got a bladder cancer diagnosis, and then we add on top of that medications for treatment. Um, patients are also getting medications from specialty pharmacies which require phone calls, et cetera. So, medication management also can be quite, um, burdensome for our caregivers.

Reena Cherry:

Um, a couple of other key points from the survey that the National Alliance for Caregiving did, um, is that they identified that at least 53% of the caregivers that they surveyed felt like they had no choice. Which means they, those caregivers felt like they were backed into a corner and there wasn’t anybody else who was going to provide support for the patient, so they were it. And the data shows that caregivers who feel like they have no choice, their own health and wellness erodes at a higher rate than caregivers who, um, voluntarily step to the, to the, position of being a caregiver. That’s also a critical data point to recognize.

Reena Cherry:

And then lastly, the duration of care, the duration of caregiving has continued to rise over the years. So as of 2020, almost 29/30% of caregivers reported they were providing support for 5 to 10 years, and that’s a large chunk of time. That’s a lot of time that caregivers are in this role and supporting, um, our patients. I just wanted to share that data with you as well.

Reena Cherry:

Okay, so I want to talk about this caregiver code of silence. Given all that we have just talked about, given all of the things that caregivers are doing, the question is why aren’t they talking about it?

And, um, there are many reasons why, I believe, caregivers remain silent. I’m going to try to highlight those for you, um, and we’re going to have to dig into three emotional concepts. The first being, uh, guilt, the second being, um, shame, and the third being vulnerability. But in general, caregivers are reluctant to talk about their journey, and it does have a lot to do with vulnerability, and it does have a lot to do with judgment. And so we’re going to kinda try to peel back those layers.

Reena Cherry:

So, this was an article that was published in the New York Times, I believe, in 2017, and it’s an article that highlights, uh, this woman’s caregiving journey of her husband who very acutely went into renal failure, and she very candidly talks about her caregiving journey. And it’s one of the first times that I saw a caregiver be courageous enough to talk about her feelings, many of them negative, about her caregiving experience. And so honestly, when I saw this article, that’s really what got the wheels turning for me to start digging a little bit deeper into why caregivers remain silent and how we could maybe help them speak out more about what they’re going through.

Reena Cherry:

So, um, caregivers, I think, as we all know, are generally overwhelmed. And I think their level of overwhelm, ah, varies obviously, as the patient gets better, their level of overwhelmed dips, as the patient maybe is going through a more intense treatment, their level of overwhelm gets greater. But the reason for their overwhelm is that many times caregivers have no warning you know, their life is going along fine, the next day their loved one has blood in their urine, and then they’re on this slippery slope of medical appointments, diagnoses, and treatment. They don’t have a lot of time to prepare, um, and I, I want to make it clear that as much as we try to tell patients and caregivers what’s coming down the pike, particularly when you have, when you’re in that new diagnosis phase, it is emotionally traumatic to hear that your loved one has bladder cancer.

And you sit in those appointments, you hear that your loved one has bladder cancer, and that’s like an emotional hit. And then, as clinicians, we move into, “Here’s what we’re going to do for treatment.” And the caregiver, the patient also, but the caregiver does not really have a lot of time to process the diagnosis before they then have to process, “Here’s what we’re going to do for the patient, here are the side effects, here’s what we’re going to…” and it’s just, it’s too much too fast, and I don’t have a, uh-uh, I don’t have any magic ways of slowing that process down, but I just want everybody to understand that part of the overwhelm is the process of moving through our medical system for better or worse. And then the other issue is that caregivers tend to feel a little less anxious when they’re able to plan. But you know the treatment of bladder cancer is a series of procedures and treatments and waiting for scans, and so there’s kind this… You’re in this sort of space of the constant unknown, um, and when you don’t know what’s coming, you can’t plan, and when you can’t plan, you sort of live in this environment of anxiety. So, that’s really how, um, the feeling of overwhelm can consume caregivers.

Reena Cherry:

Um, now I want us to focus on guilt. When I was trying to understand these really deep emotions that caregivers have, I turned to the work of Dr. Brené Brown. Dr. Brené Brown is a doctor of sociology out of the University of Houston, and she has really done some extraordinary work in the areas of guilt, shame, and vulnerability. So, if you are at all interested in learning more about these emotions, I strongly encourage you to read her work. It truly is amazing.

But Dr. Brené Brown defines guilt as cognitive dissonance where we feel bad for doing something that is not aligned with our values, and we need to make amends or hold ourselves accountable. How does this play out for caregivers? Number one, caregivers feel guilty because they’re not the patient. They feel very guilty that the person that they love more than anything has this diagnosis and they are healthy, um, so there’s a lot of guilt in that. Uh, caregivers feel guilty because you know discussing their feelings in any way seems selfish. We have created a healthcare system where all of the focus is directed towards the patient. And that’s not wrong, but it doesn’t leave any space for caregivers to express their part of the journey without feeling like they’re taking away from the patient, and that leads to guilt.

Lastly, caregivers typically have an idealistic vision of how care should go for their loved one. Most caregivers want the best for their loved one. They want the best hospital, they want the best medical oncologist or surgeon, they want the best treatment, and they want the best home care for their loved one. The realities of caregiving, however, are quite different. And so the difference between what a caregiver can realistically achieve on a daily basis and their ideal vision of what they should be able to achieve, the delta or the difference between those two is where guilt really starts to fester.

Reena Cherry:

All right, now we’re going to talk about shame. So Brené Brown defines shame as, “Is there something about me that if someone else sees it or knows it? It will make me unworthy of love and connection.” That is shame. And I think if we all think about the times where we have felt shame, this definition is spot on.

How does this present for caregivers? Caregivers feel an extraordinary amount of shame when their feelings about the tasks of caregiving are contrary to what, how they feel about the patient. What does that mean? As a society, we have linked together the relationship the caregiver has with the person they’re caring for, their love for that person, and we’ve linked that with the task of caregiving, and here’s how it looks. “If I love my husband or my wife, I love caregiving. If I don’t love caregiving or if I resent the tasks of caregiving, I must not love my husband or wife. I must not be a good spouse.” And what we absolutely have to do is separate these concepts. It is absolutely possible and is often the reality to love someone unconditionally but resent or strongly dislike the tasks of caregiving. Those two things, are not, they’re not, they should not be together. If we can separate these concepts, we create a space between. And the space between is a safe space where caregivers can authentically talk about their caregiving journey without the burden of judgment. And when we create the space without the burden of judgment, we dissolve their shame. And when we dissolve their shame, they will feel safe talking authentically about their caregiving journey. But I want to make it clear that as a community of people in support of caregivers, we have to create the space for them. We cannot expect caregivers to create this space for themselves. We have to start having conversations and open up the conversation so that we detach, we detach the love they have for their husband or wife from their feelings of caregiving. And once we do that, we will start to dissolve their shame.

Reena Cherry:

All right, what are some of the tangible ways we can help? The first is that we have to start addressing and acknowledging caregivers, and we have to acknowledge them with intention.

Now, clinically for, for us, that meansnot sweeping caregivers up into what’s happening with a patient. Caregivers do, they tend to get swept up with a patient, so we walk into a clinic room, we talk about you know, the treatment, we ask how the patient’s doing, we review the treatment plan, and the caregiver does get swept along in that. We have to address caregivers with intention and I’m going to take a minute or two to share with you how I do this, um, with caregivers. If I have a 30-minute slot to see a patient, I usually use about 28 of those minutes and those minutes are directed towards the patient. And then I do a couple of things that I think are very critical. The first thing I do is I look at the patient and I say, “Mr. Jones, would you mind if I address your wife directly for one or two minutes?” 100% of the time, patient will say yes. That does two things. One, I have asked the patient permission to use a couple of minutes of their clinic time in order to speak directly to the caregiver. I have also done this in front of the caregiver, so now the caregiver knows we have permission to talk and they can take up a little bit of space. And then the second thing I do, and I think it’s the most important, is I will look at the caregiver, I typically scoot a little bit closer to the caregiver, I do intentionally, um, enter their personal space, not to freak them out, but I want to get into their personal space, and I look at them and I ask, “How you doing?” And almost 100% of the time that I do this, the caregiver will start to cry. Now they can tell typically by the look on my face and the tone of my voice that I already know they’re not okay. So, now they don’t have to put on airs. They don’t have to pretend like everything’s fine, “it’s fine, we’re fine, everything’s fine,” they don’t have to do that. I’ve already opened the door because I’ve suggested to them with my voice and my face and getting close, “I’m pretty sure you’re not doing okay.” And then I will ask them, and the way that I ask is, “If I had a magic wand and I could wave that magic wand and make just one thing a little bit better for you, what would it be?” And caregivers can very quickly, typically, start to talk about the one thing that is bothering them the most, and we can talk about that thing in one or two minutes, and my goal as a clinician is not to solve all of their caregiving problems, it’s to take the edge off of the one thing that’s really kinda keeping them up at night. The one thing that’s really nagging at them. And it is my intention when I do this that that caregiver leaves that clinic room feeling seen. And that I think is really the crux of acknowledgement. It is interacting with a caregiver in a way that allows them to know we see them. So that’s acknowledgement.

The second is clarify the medical landscape. Usually we talk at the patient and at the caregiver about side effects. What I try to do in clinic spaces is to talk about side effects and, and give the appropriate information about what to expect, but then I will also, and again, intentionally turn to the caregiver and say, “This is what it’s going to look like for you. “And then I will talk about the, the side effects from their lens, through their lens, from their perspective. “Yes, you know, your husband is going to be moving through immunotherapy. Here’s what it’s going to look like for you. Probably going to be a pretty, pretty easy caregiving lift. Here are the things that I really want you to focus on. Don’t worry about all the other things.” And I do that with chemotherapy or I do that with radiation, but I intentionally talk about the side effects through the lens of the caregiver, and that helps them really understand where they’re going to need to really be intensely involved, when they have an opportunity to fall back and maybe take care of some other tasks for their other family members or, God forbid, for themselves. Um, so talking about side effects and how the treatment’s going to look through their lens, I think, is really critically important. And then lastly, we have to provide resources and a sense of community for our caregivers.

Reena Cherry:

This is a list, it’s not a comprehensive list of resources where you can go and find specific information that you’re looking for with respect to caregiving. Um, you’ll notice at the top I have the National Alliance for Caregiving, which is, I want to say it’s an extraordinary website, so, um, uh, different categories. So there are people caring for people caring for uh, people over the age of 50, um, gen X, uh, caregivers, LGBTQ caregivers, um, African American caregivers, Asian American caregivers, so they, they’ve broken this down into many different categories so I think  every caregiver can find  themselves in the information that they have, and I think it’s beautifully organized. But, but there also, obviously, is a whole laundry list of other resources that you can find online. 

And as we close, um, I want to acknowledge that caregiving is… It’s extremely vulnerable. One of the hardest things we will do as human beings on this earth is to take care of another human being that we love who is sick. And caregivers often feel so vulnerable and I want to change our mindset about vulnerability and Brené Brown, once again, knocked it out of the park and I’ll try not to cry when I read this because I cry every time. 

Reena Cherry:

Here’s what she had to say about vulnerability. She said, “Vulnerability is not winning or losing. It’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; It’s our greatest measure of courage.” So to all of the caregivers out there, thank you, thank you, thank you, for all of the extraordinary work you are doing to support our bladder cancer patients. You do have a community. We are here to support you and we truly, truly appreciate and value you.

Reena Cherry:

Thank you so much for your time.

Patricia Rios:

So with that, I’m going to, uh, lead us into our Q&A. Reena… um, well, one I, again, thank you for, for giving our caregivers a voice, uh, during this webinar. I, I, was curious, you know you talked about the different… um, how you create a space, you recognize caregivers, um, and you asked the question what, what, keeps them up at night? And I’m sure there’s many responses that you get, but I wonder if there’s a common theme that comes to mind that you might be able to share with us.

Reena Cherry:

Yeah, I think, I don’t know that there… you know, caregiving, the other, um, challenge with it is that, um, the caregiving journey is really different for every family and every, um, every caregiver. So, there are different, um, pressure points for every caregiver. I think, again, as I sort of touched on, I think the unknown in general is really eats away at caregivers because they’re frantically trying to strategize and plan. And so, I think the more we can give them an idea of what’s coming down the road and what they need to worry about and what they don’t, I, I, think it’s really unhelpful for us to say, “Hey, don’t worry about it, don’t worry about it,” um, they’re going to worry. They’re going to worry. So part of what, um, I try to do is help to them prioritize. So, um, like, as an example, many caregivers are obsessed about making sure their loved one eats. This is, this is, actually a common one. “He’s not eating. She’s not eating.” And, and, they’re really, really intent on, on, feeding because when we, as human beings to nourish somebody is to give them food, that’s one of the things that we do as human beings is we want to nourish. But if someone is moving through systemic chemotherapy, they’re going to have a very, very low appetite sometimes no appetite, and what caregivers sometimes don’t understand is that it is extremely difficult to eat when you have absolutely no appetite. Most of us on the call have some sort of an appetite. We might not feel like eating now, but our appetite exists. So when patients are void of an appetite, it’s really hard for them to eat. And so, one of the things I’ll tell caregivers is, “listen, don’t, like don’t, exhaust yourself whipping up three course meals during chemotherapy. Like he’s probably not going to want to eat that much.”

I don’t care how good of a cook you are, and I don’t care how big the meal is. So, maybe just choose one or two things, if he says he wants to eat like a bologna sandwich a day, just make a little bologna sandwich. You don’t have to make a huge dinner meal. So just kinda helping them understand what is more realistic um, and, and what they don’t really need to do.  So, eating and appetite is just one example. But again, I think giving them an idea of things that they don’t have to worry about now, things that they we will definitely address later to help them shift and prioritize what’s on their plate is really important.

Patricia Rios:

Yeah, yeah, and I think, uh, I think you mentioned, um, something very valuable is that you know, as caregivers we want to do everything we can to be able to show our love, and, and, um, whether that includes you know, uh, feeding them, uh, and you know and so I think uh, um, uh, perhaps, like, the, the, the, the, the suggestion may be also to you know um, uh, the, the little things count, right? It doesn’t have to be, uh, um, you don’t have to go above and beyond, um, with some of the stuff and, and really understanding kinda what the loved one is going through, um.

Reena Cherry:                 

Yeah.

Patricia Rios:

So, with, let’s switch gears to self-care cause I’m, I’m curious to hear, because one of the things that I hear about a lot with caregivers is, is, burnout, um. And, um, oftentimes I think um, caregivers, may not realize that they’re suffering from burnout. Are, are, there any specific signs that, um, you can share with us that, um, caregivers should be aware of, um, that they may be experiencing burnout and how to get help?

Reena Cherry:                 

Yeah, so that’s, um, that’s a huge, that’s a huge topic, um, I think that, and when, when I, I work with caregivers one-on-one, burnout is, it’s really hard to avoid it, but I think there are certain ways that caregivers can slow it down and help try to weave in some self-care as they go. So, one of the challenges is convincing caregivers that it is okay for them to take time to care for themselves. Most caregivers do not feel entitled to do this. And so their mindset is, “If I’m a good caregiver, all of my energy and effort goes to the patient, 100% of it.” And they go all out for the patient all day every day, and they will not give themselves permission to care for themselves. And that is a very fast way to burnout. So what I encourage all caregivers to do, I’m officially giving every caregiver who watches this permission to do this, is to choose one thing that they do that makes them feel replenished or revitalized or rested or more present and relaxed.

It can be anything. It can be sitting quietly in a corner. It can be reading a book. It can be journaling. It can be knitting. It can be playing cards with your friends. It can be anything. And I will encourage them to carve out… I would love for them to carve out 20 minutes, but if I have to settle for 10 or 5, I’ll do it, but they carve out 10 to 20 minutes a couple of days a week to do this for themselves. And that time has got to be protected time. That is the time for them. It’s not for the patient, it’s not for their kids, it is for them. So I coach them to set a hard boundary around that time, and I’d love for it to be every day, but that’s unrealistic for a lot of caregivers, but it’s a hard boundary and it’s something they can look forward to that they do for themselves. And when, when we do this for ourselves we tend, it’s like filling your own bucket. When you do this, you fill your own bucket and then you’re really in a much better headspace to then move forward and help you know the person that you love. So, that is something that I really coach caregivers to do, and I encourage all caregivers to do for themselves, create space. Yeah.

Patricia Rios: 

Thank you. You remind me of a, of a, quote I read somewhere that says, “Taking care of yourself is part of taking care of others.”

Reena Cherry:                 

Yes.

Patricia Rios:

So that’s, um, a valuable tip. On your presentation, you used the word informal caregiving, and that is the first time that I’ve heard informal part as part of caregiving, um, it, which led me to, to, wonder is there a formal caregiving? That is, where did that come from?

Reena Cherry:                 

There is. So there are two categories of caregiving. There are formal caregivers. Formal caregivers are, um, typically medical professionals who have got received training, a license or certificate to give care to a patient, um, and we are paid to do so. That’s a formal caregiver. So if you’ve moved through any sort of a formal education process, received a license or a certificate or graduate degree, and you care for a patient and you do so professionally, that’s formal caregiving. Informal caregiving is essentially everything else. They are, um, people who do not hold a degree, typically, um, who don’t have medical training, who are providing medical support for patients at home and who are not paid to do so. Those are informal, caregivers and I stress not paid to do so because as I mentioned in my talk, um, there’s a significant financial impact that goes along with caregiving and there’s a financial impact just in general. Just supplies and the gas going back and forth and the parking and all of these things that caregivers absorb. And then, um, as we talked about, many of them are having to reduce their footprint in the workforce or leave an entirely in order to assume their caregiving tasks. So, um, It’s a really is quite a significant financial, um, impact that caregivers have to absorb.

Patricia Rios:

Absolutely. And from my understanding, in some states they, they, recognize that and so there are some caregiving or caregiver reimbursement programs. Are, are you familiar with that? If so, can you speak to that?

Reena Cherry:                 

Yeah, I’m not familiar with, um, what’s available state to state. And sadly, actually, I’ve not looked into this. I’m in the state of California, um, but there are some reimbursement programs available. I think those are you know specific. So, if you do qualify, um, you may be entitled to, um, some type of reimbursement. But that’s again, that’s a state to state difference. And will take some digging, of course, and as we talked about, phone calls, follow up, et cetera. But I do think that, um, in some instances there is some financial assistance available. I just don’t know how long that financial assistance, um, will cover that caregiver. And I certainly… um, I don’t know the numbers, but I don’t think it will, uh, unfortunately, absorb all of the financial, um, implications for that caregiver.

Patricia Rios:

That’s correct. But if you’re interested in learning more about those, I think it’d be interesting to look, to check with your local, um, health program to see, you know, what it covers and…

Reena Cherry:                 

I think if you go to the state, um, the state government website, usually you’re able to sort of navigate and you can pretty quickly find, uh, tabs if there are any resources available. Those should be listed there for, um, for the patient.

Patricia Rios: 

Okay. Thank you. Thank you for that.

Reena Cherry:                 

For the caregiver. Excuse me.

Patricia Rios:

Yeah, uh, the caregiver. Yes. And, and so, so, you, uh, okay so you talked about and defined the informal formal caregiving. Does respite care fall under formal caregiving, and um, how would you define that?

Reena Cherry:                 

Respite care… Are you asking if it’s available for informal caregiving or what, um, can you clarify your question?

Patricia Rios:

Yeah, one, can you explain what respite care is and um and, how to how, can one tap into that kind of resource?

Reena Cherry:                 

Yeah, so respite care, I think, would be, um, an extraordinary resource for caregivers. Many caregivers, again, when they find themselves in these high intensity situations, that’s what they need is respite care that they can, that they trust um and that they can count on. And I don’t know of any, um, 100% reliable respite care resources. Certainly, there are private pay, uh, individuals who will come in and provide that sort of respite care, uh, for the patient, but that tends to be incredibly expensive. So, it’s one of the things that… I know the National Alliance of Caregiving is looking at, um we, but we do need much more, um, options for caregivers and we need respite options that are affordable. So there are respite options out there. There are um, private, um, companies and organizations that provide this type of care, but the financial impact of that is significant. I will also say this though, um, you know, I’ve known caregivers that have, um, money and resources and have almost around-the-clock, um, private care for the patient and those caregivers are still overwhelmed. That’s why I spent so much time talking about how overwhelming this is, is, that I really haven’t seen a difference in the level of overwhelm, based on resources and money available. I have seen caregivers who really don’t have a lot of resources, they don’t have financial resources, and they are really struggling. And I have seen the other spectrum where there are caregivers who have access to financial funds and private care, and everyone across the board is completely overwhelmed. But I certainly do think we need to do better and we need to do more at providing resources. I’ll certainly do some, some digging, um, and if I come across any really good reliable resources, I’ll share them with you and you can share them with the BCAN community.

Patricia Rios:

Absolutely, and, uh, um, there, there was a question in the chat, uh, about, uh, creating a space, uh, for caregivers, uh, in the future, um, and for particularly for bladder cancer caregivers, um, and the answer is yes. BCAN is definitely looking into how else we can, um, better support, um, caregivers through, through, their journey of caregiving. So, stay tuned for, that. And there is another question that came in from one of our, uh, attendees, Reena, um, and this question, um, this person’s asking, “How do you distract yourself from thinking about caring for the patient while you’re looking after yourself or working or relaxing?” That’s a very good question.

Reena Cherry:

Yeah, it’s a very good question. I think, I think, it takes practice. I think that the more you create time and space for yourself, and I think talking to the patient also, so, is really helpful. When you say, “I really want to be the best caregiver, spouse I can be for you. In order to do this, I have got to carve out a small amount of time for myself. And I wanted to talk to you about this because, I don’t, I don’t want to feel guilty, and I don’t want you to feel like I’m not focused on you, but in order for me to fully engage in my care for you, I have to create a small space for myself.” I think most patients would understand that. And then I think it just takes doing it consistently. That’s why I love having people do it as consistently as possible so I’d love for, for, caregivers to do this every day, but, um, I think consistency is the key. And then I wanted to add one more thing. I know we’re coming to time, but, um one of the ways that I think we can really help support caregivers is that we do have to understand vulnerability. And my comments about how vulnerable it is to be a caregiver, I hope resonated with everyone. Most people when they are in a situation of need are not willing to be vulnerable enough to reach out and call for help. If you think about the times when you yourself have felt like, “Oh my gosh, I’m totally overwhelmed. I don’t know what I’m going to do.” Most of us are reticent to ask for help. And we’re reticent because we don’t want to feel that vulnerable. So we cannot, as a community of people who support caregivers, we cannot expect that caregivers are going to pick up the phone and call us and tell us they need help. They’re not going to call. They’re not going to call because typically they don’t want to be a burden and they’re not going to call because it is just an incredibly vulnerable, um, thing to do. And so, we have to engage with the caregiver. We have to be in the driver’s seat. We can’t sit back and say the famous words, “Call me if you need anything.” Call’s not coming. We have to reach out to them. And if we can do it and really think through… I encourage people to really think about how you can engage. You don’t have to do it like your neighbor would do it. If you don’t cook well, don’t offer to bring meals if that’s not your thing. But really think about how you can intentionally engage with that caregiver.

It might be a text message once, once, a week. It may be you know going over and physically just knocking on the door and saying, “Hey, I was thinking about you. I’ve got about 20, 30 minutes. Can I help?” It may be offering to do a little laundry for them once a week. But we have to go to them and we have to bridge that gap because waiting for the overwhelmed caregiver to call and tell us, “Hey, I’m overwhelmed.” We’re going to miss, were going to miss them and so that’s really another take home that I wanted to highlight is that we really do have to make the effort and we have to really go, um, we have to go to them.

Patricia Rios:

Yeah Reena, this was a very, uh, powerful discussion. And, uh, um I certainly, um, uh, took, I’m certainly going to learn how to you know be more courageous, um, by being more vulnerable. And, and, and, I hope all of our caregivers who are listening today also feel empowered to, to, feel more vulnerable.

I, I, do want to mention a couple of things before we end. Aside from this webinar being available on our website two weeks, um, from today, we also have a, um, support line, um, that is in, uh, partnership with CancerCare and staffed by oncology social workers. And that’s a resource for all of our caregivers. If you just need someone to, to, listen, someone to talk to, someone to walk you through different resources in your own community, that is available to you for free. The, the information is in the chat. We also have, uh, um, as part of our peer-to-peer program Survivor 2 Survivor, we have a, a, network of caregivers who are available to, to, um, walk and, and, talk to you through their journey. If you need to talk to someone, um, as well, we can, we can, make a match. And the information on that program is there too. If you’d like to volunteer and, and help and we be matched with another caregiver, um, as part of that program, that is also an option and we invite and encourage you to do that. And with that, I want to really thank, um, uh, Reena for, for, bringing this, this, conversation to, uh, us this evening, um, giving us some very, um, practical and powerful messages, um, and help, and help giving us opportunity to reflect and um, also empowering us to, to, uh, to, take care of ourselves, uh, and to be courageous by being vulnerable, uh, and, uh to, to, um, say that we are here for you and we’ll be reaching out to, to, um, to, tell you that we’re here and see how we can help you. So, with that, Reena, thank you so much.