Full Episode Transcript

Nancy Treaster

We both wish we knew more about incontinence before incontinence began.

 

Sue Ryan

We sure do. For Incontinence, we actually created a five part series because there’s a lot going on with Incontinence.

 

Nancy Treaster 

Yes, there is and it is coming.

 

Sue Ryan 

It sure is. In this series, we’re helping you preserve your care receiver’s dignity through their incontinence. For you, we’re sharing tips to help you be prepared mentally, physically, and emotionally for this transition that’s going to last the rest of their lives. Our five podcast episodes in this series are episode nine, preparing, episode 10, pre -incontinence and when incontinence first begins. Episode 11 is cleaning our care receiver, episode 12 is bedbound and bowel incontinence and episode 13 is incontinence overnight.

 

Nancy Treaster

This is the second episode in the Incontinence Series. And in this episode, we’re focused on helping you navigate pre-incontinence and once incontinence begins. We don’t think anybody should have to make this up. We want you to know what’s coming and not have to guess. It’s an emotional time. It’s emotional enough already, honestly. We have four tips. Sue, are you ready to get started?

 

Sue Ryan

I am ready to get started. You’ve heard the word pre-incontinence. When Nancy and I were talking about our incontinence series we coined the phrase pre -incontinence because what we recognize is there really is a phase before incontinence actually begins, but when they’re kind of on the runway toward incontinence. What we also recognize for both of us with our spouses is after the diagnosis, it was really between three to three and a half years before the actual incontinence began. The journey toward it began sooner. And also the things that we can be talking about can begin as soon as there is a diagnosis. There definitely is a phase called pre -incontinence. And these are some things that our care receiver is alerting us to. For example, it may begin with some simple mistakes. They use the trash can instead of the toilet for their toilet paper. They don’t flush the toilet. They’re not getting to the bathroom fast enough. And they may begin resisting drinking because they don’t want to have to go to the bathroom. And when we’re seeing signs of this, we want to really, really make sure we’re supporting them so that they continue drinking. As incontinence does for a start, it’s usually urinary incontinence. And they’ve got a little bit more of a runway before we have to deal with a bowel movement. When they have to go to the bathroom, just like for those of you who raise children, they kind of start telegraphing to us. So in this pre -incontinent phase, they may be kind of looking around. They may be holding their stomach or their bottom or holding themselves between the legs. Now if we’re not available, for example, if we’re asleep or we’re out of the room, then we wanna do as many things as we possibly can to make it easy for them to find the bathroom on their own. And this leads to the first tip, Nancy.

 

Nancy Treaster 

The first tip is make it easy to find the bathroom. We talk a bit about this same topic in episode 4, is our wandering episode, when we talk about wandering at night.

 

And this is really focused on how you help them find the bathroom as easily as possible. First, leave the lights on. If it’s day or night, the light needs to be on, it needs to be almost a beacon to the bathroom. Particularly…

 

Sue Ryan 

That’s a really good expression for it, really is a beacon.

 

Nancy Treaster 

Particularly if it’s at night, if they don’t have an en suite with just a bedroom and a bathroom and they have to walk down a hall to get to a bathroom, try to make the path to the bathroom as limited as possible. Childproof door knob covers any doors they might pass on the way to the bathroom so they’re not tempted to go into those thinking it’s the bathroom. Tall pet gates to block off any other halls they might go down or places they might go. Try to make it as simple as possible to get to the bathroom and that’s really the only other place they can get to besides their bedroom. You probably want to take the locks off the bathroom or someone might lock themselves in the bathroom. I can’t imagine how that might have happened before. Definitely happened at our house.

 

Nancy Treaster

Also, eventually, now remember this phase is not permanent. This is them still using the bathroom. Eventually, they won’t even try to find the bathroom anymore. But during this phase, you’re likely going to get to a point where you even want to take the door off the bathroom. If you go to a care community into the memory care unit, you’ll find that the residents do not have doors on their bathrooms because that’s just one more impediment to the bathroom. Is it the right place? And is this where I should go? Now once they’re in there, we want to make it as easy to find the toilet as possible. Take the toilet lid off, not the seat, but the lid. Because if the lid is closed, that can be confusing. Take distractions off the counter. If there’s a bunch of stuff on the counter that they can get distracted by.  Put as much of that away as you can. We want them to walk in the bathroom and see the toilet and that’s the main thing that they’re focused on. Once my husband’s dementia really got down to the point where the incontinence became a big part of what we were dealing with, he locked himself in the bathroom as I hinted to earlier. If the toilet lid was down, to him, the toilet was unavailable. If the door to the bathroom was closed,

He assumed the bathroom was unavailable or didn’t even know that was where the bathroom was, so he wouldn’t go in. So these are all things that you can do to help make the bathroom easier to find, but also minimize the number of accidents that you have around or outside the bathroom. Once his incontinence had taken hold as well, I started encouraging him to sit down as much as possible on the toilet.

 

Sue Ryan 

This is a great tip, Nancy. This is a really valuable tip.

 

Nancy Treaster 

Thank you Sue and that’s because hitting the toilet was becoming quite the challenge and that’s less mess to clean up. But secondly I wasn’t always sure when we went to the bathroom exactly what he needed to do. So sitting down was the safest option that we had. So when it comes to messes Sue, how do we also avoid some additional messes? How about tip two?

 

Sue Ryan Tip two is scheduling time to go to the bathroom. And we talked about this already is in pre continence, we wanna start observing what their patterns are and getting very, very specific about scheduling times, getting them as soon as we possibly can, early in the diagnosis, getting them on a routine while we still have the ability to have conversations with them and help them get on there and get their body clocks on. Getting them as soon as we possibly can, early in the diagnosis, when they have the ability to have conversations to help them get on there, get their body clocks on that schedule. And then we monitor it and we track it and we find out, for example, is there a food they eat that gets them off of their schedule? Is there something that goes on? We want that schedule and we want that information for us, for the doctors, and then for any other caregivers who may come to share time with them. And throughout the remainder of our caregiving journey, this can potentially be one of the most challenging things we face as part of the responsibilities because it’s not going away.

 

Sue Ryan 

It’s going to become more routine. It’s going to become easier. The early phase of incontinence is the most challenging. Incontinence is not going to stop and it’s unavoidable. So as their journey progresses, they’re going to quit remembering about the toilet completely. So the more we’ve got them on that schedule, the more we know when it is and the more frequently we can get them to the bathroom, the easier it’s going to be not to have accidents.

 

I support meetings. I’ve heard some people say, well, we don’t want to have to change their Depends all day long. So we just take them to the bathroom every four hours. And that’s one perspective. One of the things that can happen, though, is if they have urinated or had a bowel movement and haven’t been cleaned, that’s an opportunity for them to start getting, you know, the adult version of diaper rash or, know, and have some other things that can happen. So we really want to try to keep them clean as frequently as possible. Another sign is that they’re gonna quit looking for the bathroom. They’re just gonna look for a place to go. So if you see them starting looking around, other than just casually looking around at what’s going on, but they’re intentionally looking around, this is a great indicator. as over the years, once their diagnosis has started, you’re gonna start seeing them, cause you’re gonna be observing

what are indicators they’re looking around for a place to go to the bathroom. 

 

This next area is really important because it’s in the early part where they’re going to still let us guide them. They’re not really sure what to do, but we can help them. However, our part in that is to really be supportive of them, to let them know that we’re going to support them getting to the bathroom. So we’re not just going to take them somewhere. And Nancy, you’ve got something you wanted to share about that. 

 

Nancy Treaster 

Mostly that I think we need to make sure we tell them what we’re doing, that we’re taking them to the bathroom. Because if they’re looking for the bathroom and if they’re frantic and you start pushing them along like you’re taking them somewhere and they don’t, they’re trying to get to the bathroom. So unless you’re giving them confidence, that’s where you’re taking them, they’re gonna fight you. And it’s already rushing to the bathroom. So let’s make sure they understand that calmly. Let’s get to the bathroom together. Also, I want to add Sue at this point, we’re talking about once incontinence begins and they’re really not making it to the bathroom very often successfully, it’s time for disposable incontinence underwear. Now that’s a mouthful, so we’re not saying that. We’re going to say Depends on a regular basis or Depends like product. We’ll talk a lot about what to do with that because that does change the dynamic of cleaning your care receiver. In episode 11, we’ll talk about cleaning your care receiver. But in the meantime, you know your care receiver better than anyone.

 

And this may or may not be the time that you need to start staying at home. In our house, we went out a couple of times once incontinence had started and it was a nightmare. And so I made the executive decision that we weren’t leaving the house anymore, or at least my husband wasn’t, because incontinence was causing too much angst on his part. Other people can still commonly take their care receivers out. And if you do, make sure you take a bag. Like you would with a young child that was potty training, change of clothes, additional Depends, cleaning products, and make sure you check with wherever you’re going to ensure that there’s some sort of a family bathroom because if there is an accident, you’re going to need to go in there with them and clean them up. And if they’re not of the same sex as you, you need a place where you can get to a unisex bathroom and get them cleaned up. So just making note of that.

 

Sue Ryan 

Absolutely and one of the other things is that we are talking about having that schedule This is another reason why we want to make sure we’ve got our schedule if we’ve got friends and when our friends who don’t have caregiving responsibilities as part of their lives. This is reasonably not part of their filter. They may say well, let’s meet at six for dinner and yet when you look at your care receivers schedule of times that are best for them some of its times for best for them emotionally, but also best for them physically, then we can try to schedule when we do go out so that it’s around right after they’ve gone to the bathroom and before they would need to go again to make it just that much easier for them.

 

Nancy Treaster 

Good point. Good point. All right, you ready to move to tip three?

 

Sue Ryan 

I am ready to move to tip three. So we’ve talked about, you know, when it’s first beginning and the fact that as it does begin, it’s going to get kind of messy. Well, one of the things when it starts to get messy is we need to clean it up. So tip number three is how we simplify cleanup. And we are talking about in episode 11, cleaning our care receiver. So this episode is not about cleaning them. It’s about cleaning the mess that’s been made and different ways to be doing that. We talk about protecting the furniture. They’re going to be finding a place to sit. Sometimes they don’t know they’re becoming incontinent. So several of the things that you can do, you can get a mattress pad and put it over the furniture. One of the great gifts that we now have are these disposable pet pads and people pads. And you can get them in a variety of different sizes. The pet ones, you can get them on Chewy .com or Amazon or anywhere, and they can get pretty darned big. We want to create barriers between our loved one and whatever the furniture is that is still there. we get that. And then, because sometimes there’s going to be something that we miss, we want to get some towels. We’d like some old towels, and we just put them in a stack, and we had a bucket that had a plastic bag in it so we could put the messy towels in that when we got done. We actually just left those out. 

 

Nancy Treatser

Not the messy ones, I hope. 

 

Sue Ryan 

No, Yeah. Good point, Nancy. Not the messy ones, but we left, we constantly had a stack of washed ones out next to the bucket and we would clean it up. Yeah, that’s a good thing. Yeah, the clean ones. Yeah, we did. We had that. But we did, kept them out because it was going to happen. And so when it happens, we wanted to make sure that it was easy to clean it up. Now, talking about the furniture and the chairs, Nancy, you had a few things that you learned.

 

Nancy Treaster 

Yes, along those same lines, actually. If you have your grandma’s favorite antique chair, now’s the time to move it to a different room. I even jokingly have what I call the chair room. It’s got like six different chairs that were out in the main level that are no longer accessible. 

 

Sue Ryan 

They look nice though.

 

Nancy Treaster 

I mean, obviously you’re going to do everything you can using some of the advice that Sue has in this tip around disposable incontinence pads, pee pads, towels, whatever you can do to put a layer between your care receiver and where they’re sitting. But there’s still going to be accidents and you just don’t want the important things to you to be potentially ruined. So get ahead of it when incontinence starts, take the important things and find another place for them.

 

Sue Ryan

And I actually went out to a resale shop and bought some chairs that didn’t have padding on them that were very simple chairs. And I didn’t mind if anything happened to them. I still protected them. And yet they didn’t have either sentimental or financial value.

 

Nancy Treaster 

You know, I did something similar to my breakfast room chairs.  They were padded and before I caught on to covering everything up they got pretty Yuck, so I bought just plain wooden breakfast room chairs and they’re great. They’re easy to clean up there and they’re, you know, they’re not something that gets looking bad.

 

Sue Ryan

That makes it a whole lot easier. And so we talked about keeping the cleaning products around. Let’s talk a little bit about cleaning the floors and things like that, because that’s going to be part of it. I left the towels out. We also got the SwifferJet. You can get a Bona. They’ve got all kinds of mopping devices that are so great. They’re just very simple for those quick cleanups. You don’t need to leave them out.

 

I just left them where they were really convenient. depends on how your house is laid out. It was more for me to have it be convenient than to have the house look like a show place. So I kept them where I could just go zip, zip and clean it up pretty quickly. And for the floor cleanup, PineSaw, Fabuloso, there are a variety of different cleanup products. And then there’s a product that’s a little bit newer that is actually really doing what it says, which is called Pooph. It helps with the urine smell. And it’s safe on pets and products and people and everything. So it’s very safe and it really does work.

 

Nancy Treaster 

Along those same lines carpet cleaning there are a lot of pet products out there you just want to focus on the pet products Resolve has Resolve urine destroyer.  There’s a picture of the pet on the front that’s great for spot cleaning on carpets. In my husband’s bedroom he has carpet and overnight, especially early on with incontinence, he wouldn’t always make it to the bathroom. Sometimes I was happy if the bathroom floor was the only thing that was wet, that was a win. But there came a time where he just wanted to get out of the bed and go to the bathroom. And pretty much anywhere on the carpet was fair game.

 

So I bought a Bissell Pet Carpet Cleaner focused on pets and then Resolve has carpet cleaner that also is focused on pets. And I was cleaning the carpet three times a week at least for quite a period of time. Now eventually the nice thing about this is the really messy part starts to subside and we were able to hone down to where about the only thing that happened was my husband would stand up next to the bed and go to the bathroom on the carpet and I bought washable jumbo pee pads off of Chewy.  I also want to note here that at first I bought a white one but because of his depth perception when we would take him to bed at night he’d get confused with the white of the pad that was next to the bed and think it was the bed itself and literally start to get on the floor. So I ended up buying a brown one. Works much better. We don’t have that problem anymore. Probably twice a week I have to wash it. But it’s now no longer the entire carpet. It’s just that one spot and it’s much more manageable with the Pee Pad.

 

Sue Ryan 

I actually couldn’t get one Pee pad that was quite the size we needed it, so thank goodness for duct tape. I would flip two over on the backside and I would duct tape them together. And then I had this nice big pad that was, it was, yeah, well, we get creative, don’t we? So it was as big as we needed to have. 

 

Nancy Treaster 

Good job Sue. I’ll put in the show notes the one I just found this probably in the last six months. It’s 72 inches; it’s the length of a king-size bed. Yes and it’s probably four or five feet wide . It’s awesome.

 

Sue Ryan 

Yeah! They did not have that when I could have used it. That’s great. good. Everybody, you’re going to have a great tip for that one. All right. Now we’re talking about cleaning everything but our care receiver. And again, the next episode is about how to actually clean them. So one of the things that if you haven’t already done this, and we did talk about it in episode four about shutting off areas of the house that they didn’t need to have access to, if you haven’t really felt you needed to do this. You really want to consider it because first of all, when they get up and they’ve got to go to the bathroom, if they had any rational thinking left, it’s really not there. They’re focused on finding the bathroom and the fewer distractions, the fewer things that keep them from the bathroom, the better. You want to have it lit very brightly because shadows can look like monsters. Shadows could be something that frightens them at night when they get up. You want to have as few different options for them to figure out what door to go to. And so really when we talk about it being a beacon, it’s like making a really clear path that doesn’t have anything that’s going to distract them and that they don’t have a chance of walking off into the wrong place. And that’s really going to help as they go through this. 

 

One of the other components that we’ve talked about in the earlier episode is these child proof door knob covers. This is so valuable for this part of the incontinence is if there is any room they could potentially think they’re going to go into that might be like a bathroom, the easier we get them channeled back, the better. And especially if we’re not right there physically with them, then those child proof door knob covers help them know that’s not the door and they go on farther. 

 

Nancy Treaster 

Alright, are we ready for tip four? 

 

Sue Ryan (25:49.51)

Okay.

 

Tip four may be the most important tip of all four that we’ve shared. And that is thinking positively, giving both ourselves and our care receivers grace upon grace upon grace at this particular time. Give ourselves grace because as we said from the very beginning, this isn’t something that we’re probably used to doing, that we’re comfortable doing.

 

And something that often happens when we’ve already had a really long, exhausting, tiring day, and this is still going to be coming up. Please don’t beat yourself up. Please, if you start to feel overwhelmed, and this can be overwhelming, reach out, reach out to someone, reach out to anyone, reach out to a support group, reach out to us, reach out to friends, reach out to someone to talk about it. It is so reasonable this can become overwhelming as part of your journey.

 

And it is a pivot point. There are many people I’ve talked with where this became the pivot point because they recognized they could not navigate all of the other care and this 24 seven. They either needed to bring care into the home or find a community to go to that some of the burden of the caregiving. This had just gotten too much for them to handle. So please, if this is where you’re at in this, that’s okay. You’re not alone.

 

Nancy Treaster

Agree. You know, on the same note, we talk about giving yourself some grace and that’s critical. But please give your care receiver grace. I’m positive that your care receiver would rather have gone to the bathroom in the toilet than either soil themselves, soldier, chair, or wherever it is that is causing that they’ve done. Try your very best to remember that they’re ashamed.

 

They’re embarrassed and getting mad and upset just raises the emotions of everyone and will just increase their angst and how upset they are. So try to be as patient, as loving, as nice as you can through this part of the journey. It does get much better, but this is truly the definition of the messy middle. It’s about as messy as it gets and it does go on for months.

 

So try to keep you cool. It’s probably the best thing to say. And use positive language. You know, when he or she does make it to the bathroom, say thank you, great job. Or even if they don’t and you go in there to clean them up. Thank you, thank you, great job. Let’s get in here and get you cleaned up. They need your support now more than ever as well.

 

Nancy Treaster 

All right, well, let’s summarize. This is the second episode in our five -part incontinence series. In this episode, we discuss how to navigate pre -incontinence and incontinence once it begins. We have four main tips. First, make it easy to find the bathroom. Second, schedule bathroom breaks. Try to get on a schedule as best you can. Three – simplify cleanup as best you possibly can as well. Use some of our tips to try to simplify cleanup. And four, give yourself some grace. Give your care receiver some grace and be as patient as you possibly can. 

 

Now, if you have tips that you think other people could leverage in this particular area, please go out to our Facebook page or Instagram page and leave your tips. Those links are in our show notes.

 

If you like this podcast, please subscribe and rate and review it. Those links are also in the show notes and any products we’ve discussed here in this podcast will also be in the show notes.

 

As we’ve said multiple times, this is a very difficult time for the care receiver and a very difficult time for the caregiver. It does get better. You go through a really messy stage and then it does calm down and become something very manageable. So hang in there.

 

Sue Ryan 

We’re all on this journey together.

 

Nancy Treaster 

Yes we are.