Caring Without Losing Yourself: Incontinence, Caregiving and Dignity

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Bruce Kassover: Here on Life Without Leaks, we spend a lot of time talking about the challenges that people who live with incontinence have to deal with every day. But one of the things we don’t always give enough attention to are the challenges that the people who care for them face as well.

They can be financial, they can be emotional, they can involve the workplace, and they deserve as much attention as anything else we speak about. So we hope that you get an enormous amount out of today’s conversation about caregiving for people living with incontinence.

Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us is Sarah Jenkins, the executive director for the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: Thank you, Bruce. I’m excited to be here. 

Bruce Kassover: Yeah, me too, because today’s guest is Aleece Fosnight. She is a board-certified physician assistant specializing in sexual medicine and women’s health and urology, and she’s also a medical advisor for Aeroflow Urology. And if her name sounds familiar, it’s probably because you’ve listened to podcasts we’ve done with her previously on things like men’s health and prostate and BPH and mental health and anxiety and absorbents and the diaper divide and, most recently, on things like postpartum health. So she is more than a friend of the podcast; she is somebody who we love talking with always, so thank you for joining us, Aleece. 

Aleece Fosnight: Oh, Bruce, it is absolute my pleasure. Thank you so much for having me on again. 

Bruce Kassover: Excellent. So Aleece, today we are going to be talking about something that doesn’t always get the attention it deserves about caregiving, and about how challenging caregiving can be from an emotional perspective, from a financial perspective, from a time perspective.

But before we even get into that, for those people who may not have heard you on any of our previous podcasts, maybe you’d want to share just a little bit about your background and how you got to be speaking with us today. 

Aleece Fosnight: I would love to. I’m Aleece Fosnight. I am a physician assistant, physician associate specializing in sexual medicine, pelvic health, and urology for 15 years, so I won’t tell you necessarily how old I am.

And so much of my work focuses on concerns that people have historically been embarrassed or uncomfortable talking about, which means bladder and bowel health. And then I also serve as the medical advisor for Aeroflow Urology, and what really drew me to that partnership was our shared focus on access, advocacy, and dignity.

Those are things that are very much a part of my own clinical mission. And for me, why that partnership matters is that we can develop the best clinical treatment plans in the world, but if our patients can’t access those products or resources that they need to carry out that plan at home, we aren’t fully addressing their care. So I really appreciate that Aeroflow helps remove a lot of those barriers.

Bruce Kassover: I love that focus that you have on things like dignity. It’s something that’s a real issue across the medical spectrum. People have all sorts of issues that they are uncomfortable talking about, they’re embarrassed to discuss.

But when it comes to incontinence, that’s doubly and triply, depending on, especially if people have things like bowel incontinence, in particular, that’s, really something that, that people are reticent discussing. So I love hearing that. But it doesn’t only extend to the people who are experiencing the symptoms themselves, it’s something that the people who care for those also deal with. So I’m really excited to hear your perspective.

The first question I have for you, though, is not even about that. It’s about what is or who is a caregiver in the first place. Somebody who’s working in a clinic, they know they’re caregivers, ’cause that’s their job. But I would imagine that a lot of people actually find themselves in caregiving positions because they’re dealing with a loved one or, somebody close to them, don’t even consider themselves caregivers. What makes a caregiver to you? 

Aleece Fosnight: That’s a really good question. And oftentimes, I think it comes down to what their definition is and if they see themselves as that caregiver. So caregiver is providing support. That could be physical support, emotional support, financial support, to another individual that is needing some extra assistance.

So we typically think about caregivers in the terms of with elderly care, but this could be with kids, with kiddos. We think a lot of times about maybe a nanny or having a caregiver that’s coming into the home. Or even if you’re taking somebody outside of the home to another place, that also can be a caregiver.

The majority of our caregivers are gonna be more female-identified individuals. So when we’re thinking about how someone might identify, I think a lot of times that doesn’t even necessarily come to their mind until they are already in it. It’s really interesting when I’m having these conversations with my patients and their caregivers are with them.

I will say to them, “What was that defining moment for you when you realized that you were the caregiver?” And a lot of times I get these blank stares because it’s, it was such a gradual potential process that kind of they just slowly, over time, that they found themselves into that role.

Now, that doesn’t always happen, and there can definitely be times where they are having to make that conscious decision to actually step into that role. But the majority of the time, it’s something that they just found themselves thrown into. 

Bruce Kassover: That’s really interesting because it does seem like it’s like you have to, in some way, if you want to really function well as a caregiver, acknowledge the fact that, hey, “I am a caregiver. I have a role, and I have a particular function.” What sort of functions do caregivers play for people with incontinence? 

Aleece Fosnight: Yep. So when we’re thinking about managing in incontinence, it could be we’re talking about toileting. We might be changing absorbent products, laundry, bathing, skin care, sometimes changing the bedding, maybe having to get someone up at night, and then all doing this while we are… let’s bring it back to the fact that we’re trying to preserve that person’s dignity. When we think about recognizing incontinence care as one of the more challenging aspects, it’s really important to understand, just like you talked about, that this is an intimate thing that we’re trying to help that individual with.

And so it isn’t talked a lot about. We’re trying to figure out how to navigate that process, especially if this is a loved one, like a parent or even a sibling. It’s really… or even a spouse, hard to differentiate your traditional role as child, sibling, or partner, and now, again, you’re into this caregiver role. 

Bruce Kassover: I see. Now you mentioned that you have conversations and interactions with caregivers themselves. So how often, first of all, how common is that for caregivers to come into these appointments and as somebody who’s on the other side of the desk, how do you interact with them and help them understand how they can best provide that sort of care to their loved one?

Aleece Fosnight: So for me in my practice, and again, I think that this can be varied across what practices that you are looking at, I would say though in a urology practice that probably potentially a quarter of the time that folks are coming in if they are having some more intense needs for their incontinence concerns, that caregiver’s coming in.

Sometimes, though, I will find that the caregiver’s not in there, and a lot of that is made by the decision of that patient. There really needs to be like that separation. So I will ask the patient, do they have a caregiver at home? What does this look like at home? We forget that what we are seeing in the exam room is just a small slice of the whole pie of what’s actually going on.

So just because that caregiver isn’t in the room for that office visit doesn’t mean that there isn’t a caregiver at home. So I want to know a little bit more about what’s happening on a daily aspect for my patient. So I may be asking questions in relationship to, “Walk me through what your day looks like. At what points during the day are you needing some assistance, and what does that assistance look like? Do you have it timed? Do you have to call for somebody?” And then, because this is who I am and I like having conversations with my patients, I will ask my patient, “How does that make you feel?” This can be a really troublesome time when we’re thinking about asking for help, especially in these intimate moments, and so I want to know how that’s going for my patient.

Do they feel like they have still agency over their body? Are they being told what to do? So really getting down to the nitty-gritty on what this actually looks like for this patient. And then if I do have a caregiver in the room with me, sometimes I will ask the patient, “Can I have two minutes, just a one-on-one conversation with the caregiver?”

When you do that, a lot can unfold in those conversations. When you’re in front of your loved one, the patient, sometimes you don’t always say what is really going on in your mind. There is so much burden and stress that caregiver is going through, they won’t reveal that in front of the patient. They don’t want to make that patient feel bad or guilty that they’re having to need that assistance.

So it can be a little bit of a mucky situation that goes on. And so I like to pay close attention and honor the experiences of both individuals. 

Bruce Kassover: Now, what you’re saying sounds to me, there’s a point here that I think that is important, not just for the patients and the caregivers, but also for the healthcare providers themselves. Because what you’re describing sounds, of course, like a medical consultation. But it also sounds like a therapy consultation as well. There, it sounds like you’re stepping into that sort of therapist role, in a sense. Is that a fair thing to say?

Aleece Fosnight: I think it’s a fair thing to say. However, I have no therapy behavioral health training, outside of the fact that I am a nationally certified sex counselor, and I have been inundated with lots of therapists as my colleagues. So I understand the importance of mental health, and the way that I work through that, I don’t give the advice.

I can validate, I can acknowledge the struggles, and I can say, “Who’s your therapist? Do you have a therapist? And if you don’t have a therapist, here are those resources that you can go to.” Because we really do. We have a limited amount of time, but my job also as that medical provider is making sure that I’m like the the travel planner, right?

I’m that triage person, that I’m like, “Okay, so here’s… You can go over here and do this, or you can go over there and see this person.” So I feel like the triage liaison person a lot of times in helping to bring in those support people. 

Bruce Kassover: That makes a lot of sense, and I appreciate also, recognizing that there are boundaries and saying, maybe there are other people who are better qualified to talk about this than I am. So that’s very helpful and important to hear.

Sarah Jenkins: One question I get all the time from caregivers is, maybe their mom or spouse is having episodes of dementia, and they just cannot control the leaks. They’re happening day and night, and they just really do not know what to do. Do you have any advice for them? 

Aleece Fosnight: So meeting folks where they’re at and helping to find products that is going to support that, and then talking to the healthcare team to see if there might be some other things that you could do to support it.

So do we understand, why this is happening? A lot of times this is potentially some functional cognitive incontinence that is going on, so no amount of medication or other types of procedural interventions may be supportive for that individual. So finding the right products are gonna be really helpful for that individual.

Making sure that fit and volume is good. Still trying to encourage voiding for those individuals. You might try timed voiding, so trying to put them a little bit on a schedule. Sometimes, again, there might be resistant to that. Don’t limit fluid intake. We really want to make sure that individual’s still getting hydrated very well.

Making sure that they’re not constipated would be another one that we want to look at, so making sure a lot of fiber. Sometimes these individuals may have more sedentary activities during the day, so getting them up, moving them around if that is safe for both you and the patient, and your loved one is going to be the thing for us to lean into.

Skin barrier options, so any type of topical ointments, barrier creams can be really helpful. And then being mindful about urinary tract infections, so changing those products as frequently as you can, not waiting or reusing those products would be my suggestion. And if you are concerned about getting products or what that may look like, Aeroflow Urology is a great place to start. 

Sarah Jenkins: Great. Thank you so much. 

Bruce Kassover: You’re talking about Aeroflow and maybe this is a good time also to talk about the financial end of things because it can be costly, and we know that especially in a difficult economy like we are experiencing it can be a real issue for a lot of people. And caregivers, especially if it’s a spouse or, a partner of some sort will share that burden directly. So maybe you could talk a little bit about that financial side of things. 

Aleece Fosnight: Yeah. The financial burden is substantial. Caregiving isn’t just emotionally expensive, it’s financially expensive as well. And what the research has shown, a lot of the data, is that nearly half of family caregivers report experiencing some type of negative financial impact with that caregiving. And what’s really interesting is with that AARP analysis is they found that about 80% of family caregivers had out-of-pocket caregiving expenses averaging around $7,000 to $7,500 per year. So that’s huge when we’re talking about it.

I like thinking about the costs that come up with this too, and I think it’s really important to talk about some of the hidden employment costs, right? So we’re talking about the financial strain on what the products may cost for those individuals and having to pay for that out of pocket, but what we don’t always talk about is the opportunity costs of caregiving.

So that’s the hours that somebody reduces at work. This may be the meetings that they miss, the promotion that they didn’t pursue, the leave of absences that they take, or ultimately stepping away from that workforce. And so when we’re looking back again at that 2025 national report, 57% of caregivers said that they had gone in late, they left early or had taken time off.

And so that’s a huge chunk of paid time that people are missing out of because of that. And then another potential way that I would love to frame it is that when we talked earlier about who are the caregivers, most of the time, about 61% of caregivers are women. And so because women make up the majority of caregivers, we also now have to recognize caregiving as a women’s economic equity issue, too.

With those career interruptions, it can compound over years into differences between salary progression, professional advancement, retirement contributions, Social Security benefits, and long-term financial security. And when we talk about the financial piece of it, we think about those out-of-pocket costs. We don’t oftentimes get to talk about those other things like the opportunity costs that greatly impact a family as well. 

Bruce Kassover: That’s really fascinating, and I really appreciate your comments about the opportunity cost because those are things that a lot of people don’t always calculate. They look at just the direct out-of-pocket expenses. And, but I gotta say, though, $7,500 a year is pretty considerable. I think that the average US salary is somewhere around $70,000. So we’re talking about more than 10% of somebody’s annual salary. If you are a caregiver for 10 years, that’s a whole year’s worth of pay that’s going directly to this. That’s a lot of money!

And then when you add it in… and like you said, you know what, you’re talking about if it’s largely, women already face extra burden financially, with pay gaps and, and o- and opportunity loss and things like that. That’s it’s really I don’t want to say it’s shocking, but it’s certainly disturbing.

Aleece Fosnight: It is, yes. And then when you throw in the fact too that a lot of these individuals are in that sandwich generation. So they’re taking care of their, let’s say, aging parents. They’re also taking care of smaller kids at home. So now they have twice the cost that’s happening. So not only are they having to leave early because they have to go take care of their mom that is dealing with incontinence, they also have maybe small children that they’re having to deal with on top of that as well.

And for me, this was a real issue that I saw for my mom. My mom was – and is – the middle kiddo. She’s the female out of all of her siblings, and she was the one who took care of my grandparents. She changed jobs. She left early. She took FMLA. And so this, is a direct impact that not only do I see with my patients, but personally I have seen it in the past.

Bruce Kassover: You added something else that’s really even maybe more burdensome and onerous. You talk about having to take care of kids and parents or spouses and loved ones. That has got to be a recipe for absolute burnout. I can imagine that in terms of just physical but also mental exhaustion has gotta be massive.

Aleece Fosnight: Correct. Yeah, absolutely. So when you’re talking about the emotional load, right? The constant vigilance, interrupted sleep, worrying about accidents, trying to protect someone’s dignity, and then sometimes feeling like you can never really step away from that situation. 39% of family caregivers report this high emotional stress related to caregiving, and this could be just such an impact on that mental load when you don’t have anybody else to turn to, and you feel guilty or you feel the shame associated with resentment, or I don’t know if I can do this anymore, and what are you supposed to do?

I think that’s the biggest question that so many of the caregivers that I see with my patients ask me all the time, “I don’t know what to do. I’m maxed out. I don’t know where my resources are. I don’t even know, like, where to start.” 

Bruce Kassover: I guess that’s the right place to ask the question. What are they supposed to do?

Aleece Fosnight: So in terms of what they’re supposed to do, one of the biggest things that I will tell my caregivers is we gotta normalize the complexity of those emotions, right? You can deeply love someone, still feel exhausted, frustrated, resentful, anxious, overwhelmed, and that those things can exist at that same time, and that we have to potentially start somewhere.

So this can be where I might pull in a caregiver advocate, and some hospital systems or some area agencies can actually help with that. Sometimes turning with your local health department can be really helpful to start pulling that in. And I will often say, who else is potentially somebody that you could lean into to help?

Do you have a sibling? Do you have another family member that could help out? Asking for respite care isn’t failure. And then thinking about even the insurance, right? So Medicare and potentially Medicaid may actually have some respite services that you are eligible for, and it’s calling up your insurance to see what you actually might have services for.

Bruce Kassover: It makes sense, and I hope that people really take that to heart and actually muster up whatever strength it takes to ask for help. I know that for a lot of people asking for help is a real challenge. And getting people to acknowledge that. Do you have any advice to help people move in that direction?

Aleece Fosnight: Yeah, absolutely. One of the biggest things is, if you have a therapist, I think talking to that therapist can be really helpful. Not every therapist is going to have understanding or experience within that caregiver grief and mental load and burnout that might happen. But those therapists can at least start you in one direction.

Giving you permission, that’s usually that first step, is giving that permission to say, “I can’t do this.” Doesn’t mean, again, that you’re a failure. It just simply means that you are maxed out. You cannot continue to pour from an empty cup, and we need to figure out other services. You can always reach out to AARP. The National Alliance for Caregiving also has extensive resources around caregiver support, workplace issues. You can reach out to your HR department and see if you can get what’s called intermittent FMLA so that you can still have a job, right? I think that’s one of the fears for a lot of my caregivers is, “They’re gonna fire me. I have to keep taking off of work. What does this mean?” And so reaching out to those workplace support can be really helpful. And then let’s see. There is other, again local resources. So there’s area agencies on aging. You can always go to their website and look up some specific local resources.

Sometimes they actually have people that just volunteer to sit with a loved one for an hour or two. That alone can make a huge difference for somebody to just catch your breath and to figure out what else you might be able to do. And then to take that burden off of supplies, ’cause that’s gonna take a long time, too, especially if you have somebody that is going through lots of products.

Just to being able to reach out to Aeroflow Urology; they have amazing customer support for you that will look at your benefits, figure out what products you have, even just trying to get you something to tide you over. So don’t forget about Aeroflow Urology as another starting point to help you in this process.

Bruce Kassover: So if somebody wants to go and see if Aeroflow can, provide that sort of support, where do they go to speak with them? 

Aleece Fosnight: So you can go to aeroflowurology .com can be a great starting point. So you can just literally go into the Google search bar and type in Aeroflow, A-E-R-O-F-L-O-W, Urology, U-R-O-L-O-G-Y, and be able to pull up their website and then navigate there. It will have, ‘contact the customer service representative.’ That’s just a nice, quick, easy way. Don’t worry about looking through all of the tabs on the website. Pretty much just find where it says ‘customer representative’ on the website and reach out. 

Bruce Kassover: I love that. And I’m just trying to imagine if it were my mom, she would probably have to gather all of her papers and spend three weeks just trying to get everything… she’ll have receipts, and she’ll have papers, and she’ll have prescriptions, and a thousand things before she feels like, like she’s ready to call. Do you have to worry about any of that? 

Aleece Fosnight: You don’t. No. The first step is just making the phone call. Don’t worry about having everything ready or having anything perfect. Make the phone call. We know that people delay reaching out because they think that they need X, Y, and Z in order for them to have questions, or if they don’t know something.

It’s okay. Make the phone call. Because what’s gonna happen is, again, somebody’s gonna validate the fact that this is hard, and that they are so happy that you called, and that they’re gonna help figure out what to do and support you during this time of need. 

Bruce Kassover: I love it. That is great. Now, one of the other things I wanted to ask you about then is, if you find yourself in a caregiving position, you may be looking back and saying, “Oh, I wish I had done this differently. I wish I had started earlier… I had done something.” What do you wish more caregivers knew when they were starting their journey managing a loved one who has bladder or bowel issues?

Aleece Fosnight: The first thing is to not normalize incontinence because of the age. And so many times, too, people think, “Oh, there isn’t anything else to do.” This is just because their loved one is getting older. But it’s also really important to bring that up. There could be something else going on. There could be some concerns with diabetes. There could be concerns with kidney function. So getting evaluated can be really helpful, as there are lots of treatable contributors to that urinary incontinence. The other one is to ask for help, and if we talk about, again, the number of individuals who are caregivers, these are mostly women. And unfortunately, it is really tough, and it’s not…

What do I want to say? It is not celebrated, asking for help. That is potentially a sign of weakness, and I am here to tell you that is not the case. When you ask for help, that is a sign of strength. That means you know your boundaries. That means that you know you, something is not working and that you cannot do it alone.

And so asking help before there’s a crisis, so learning about the different products. What is the type of skin protection? How about different toileting strategies or even bowel and constipation management? What are the type of medications that maybe my loved one has access to or that could be a potential mobility or even insurance coverage?

You don’t want to step into that when you’re already exhausted. And then the other thing, too, is we want to continue to protect that dignity. Again, these are hard conversations to have when it’s your loved one. So needing help with toileting doesn’t make someone a child. So asking how they want to be helped… we want to protect that privacy, continue to give agency to that person, and provide them choices. We want to make sure that they continue to be involved in those decisions about their body whenever possible. We also want to make sure that people know that it isn’t a one-size-fits-all when it comes to products, and that more absorbency isn’t automatically better.

We want to talk about fit, skin health, again, mobility and dexterity, the nighttime needs for somebody so that maybe they don’t have to interrupt their sleep because they’re leaking out of their product. We want to know about how amount and the types of leakage that are happening and how this is impacting that person’s lifestyle is all gonna be really important.

And then the last thing that I always tell my caregivers, too, is don’t disappear into that caregiver role. You are still a person with needs, wants, and desires. And particularly women need to hear this, is that your health, your career, your relationships, and your financial future still matters.

So asking other people to participate in care isn’t selfish. So moving away from this expectation that one person very often the female-identified individual, should quietly absorb that entire responsibility needs to be debunked and moved to the side. 

Bruce Kassover: That is so important, and I love that you stress that. Now, we have been talking about a lot of this in the context of caring for people who are older, though I would imagine that a lot of it is equally applicable regardless of age. But I’m wondering if there might be some sort of distinct or special guidance or advice that we could give to people who are caring for somebody who’s incontinent because they have a disability, a neurological issue, something along those lines that’s really distinct also.

Aleece Fosnight: Sure. Yeah. Incontinence does not just impact people who are aging. They can really impact everyone, and especially we know somebody who’s had a, a spinal trauma or injury, those who are, who have a disability. It could also be, postpartum could be another instance where we have urinary incontinence.

For those individuals, again, incontinence, and if there’s, one thing that I want everybody to take away from this, is that there is… there should be no shame in having a conversation or acknowledging the fact that there is some incontinence going on and it is greatly impacting your quality of life.

I love my, Brene Brown, and for those Brene Brown fans that are out there, you remember that, there’s a difference between having guilt and having shame, right? Guilt is, “I did something bad,” and shame is, “I am bad.” And shame is so woven into urinary incontinence that being able to break that down is really tricky and does have to happen at that caregiver or the person who’s experiencing it at their level.

And so, really acknowledging that this isn’t something that you did on purpose. You’re not making this happen. It is something, a physiological process that is occurring in your body that you, again, have no control over, and we have some resources to help with that. While we have some amazing resources for those that are aging and that kind of Medicare/Medicaid population, when there are some disability benefits that can happen for those individuals, that definitely can be the case.

I will always defer to somebody’s insurance and reach out to Aeroflow Urology. They are gurus at looking at your insurance and what your plan does and does not cover, or what you can receive in terms of products or benefits. There is also a lot of agencies out there that will donate products, incontinence products to you also. So even if you don’t qualify for some of those products, there are other ways to get those resources to you. 

Bruce Kassover: That’s outstanding to hear, and I hope that people really follow up on that. That’s really great insight, so thank you for that. But as this is Life Without Leaks, and one of the things we always like to do with our guests before we’re done is ask if they can share one little hint, tip, strategy, bit of advice to live a life without leaks. Now, maybe this is not really for somebody themselves to live a life without leaks, but for somebody they’re caring for. What would your strategy, advice, hint, or tip be? 

Aleece Fosnight: So yeah, this is a twofold. So my biggest tip is to, for those that are suffering from incontinence, is don’t normalize it.

We, again, know that bladder and bowel leakage are super common, but that doesn’t mean you or the person you’re caring for should simply have to live with it. Get curious, ask lots of questions, seek treatment, use resources available, and ask for help early. And then those that are listening in that are on the caregiver side of things, remember that your health and quality of life matters too, and that a good care plan should preserve dignity, independence, and connection for the person that you’re caring for without requiring you to sacrifice yourself in the process. So two tips there for our listeners.

Bruce Kassover: I appreciate the extra. That’s wonderful advice. So thank you so much for sharing it, and we appreciate you being on the show again today. As always we love having you as a guest, and we look forward to the next time you join us as well.

Aleece Fosnight: Wonderful. Thank you so much, Bruce. It’s, like I said, always a pleasure to be here and to raise awareness about a topic that is so near and dear to my heart. 

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.