Full Episode Transcript

Nancy Treaster 

We both wish we had known what to expect and how to be better prepared for incontinence.

 

Sue Ryan 

We sure did. For Incontinence, we’ve actually created a five-part series because there’s a lot going on with this topic.

 

Nancy Treaster 

There really is, and it’s coming.

 

Sue Ryan 

It is. In the series, we’re helping you work with your care receiver so that you’re able to maintain both yours and their dignity throughout the entire caregiving journey. We’re also focusing on helping you so that you’re mentally, physically, and emotionally prepared for the journey.

 

Nancy Treaster)

That’s so important.

 

Sue Ryan 

It is so important. The five parts are this episode, episode nine, which is before incontinence begins, preparing for incontinence. Episode 10 is what we call pre -incontinence and then the early stages of incontinence. Episode 11 is how we clean our care receiver. Episode 12 is bedbound and bowel incontinence and then episode 13 is incontinence overnight.

 

Nancy Treaster

In this episode, we’re talking about getting you better prepared than we were. We’ve got four main tips that we’re sharing. Sue, let’s get started.

 

Sue Ryan 

Incontinence can be one of the hardest areas of our caregiving journey because it’s so incredibly personal for both you and your care receiver. We’ve heard stories in support groups where people who’ve been married for many, many years say, never talked about going to the bathroom, even in any area of our relationship. So it’s not something that’s often just, you know, like talked about over a cup of coffee. In the very beginning, we want to make sure that we’re intentional, that we’re being very intentional about learning how to maintain as much dignity for both our care receiver and for us, especially because this hasn’t been discussed much. Another part of it for us as caregivers is that it’s one of the most difficult challenges we’re going to be facing throughout the journey because there are so many differences.

 

It doesn’t always start at the same time. It doesn’t always begin in the same way. And in the beginning, there may be a lot of shame and embarrassment our loved one is feeling as they start navigating this because it is a loss of control for them. So often what we’re talking about is staying fully present in the moment, which we want to make sure we’re doing even in these moments. This is an area because there’s so many things to be doing for us to be preparing. So we want to kind of be exploring what else is possible in order to know when something happens that we’ve already considered what the potential issues can be and we’ve already prepared to address them.

 

Nancy Treaster 

That’s a really good point, And so let’s just check real quick about incontinence. There’s some, really, really early signs that’ll let you know you need to start getting your head wrapped around this because something’s coming. They start forgetting to flush the toilet. They put toilet paper in the trash can. They are looking around for the bathroom, they’re not sure where it is. These are really early signs. And when it comes to, you know, where this fits in your journey, every journey of course is different, but for our house, I would say with my husband, that was probably about three and a half years after his diagnosis. Sue, what about your house?

 

Sue Ryan 

I’d say so, about three, three and half years, yes. And with my dad as well. The beginning parts of it start around then. 

 

Nancy Treaster 

At least, those are some early warning signs. And also at this point, you’re probably still going out to dinner and lunch and such. So the concept of them having a hard time finding the bathroom and just the fact that their memory’s starting to fail as well, you’ll find yourself showing them to the bathroom, standing outside the bathroom if you’re not of the same sex as the person that you’re caring for. Sue has a really helpful tip if you’re in that situation, 

 

Sue Ryan

I did a couple of things. One of them is I would have my dad or we’d have Jack stand before we went out and we took a picture of them. So we had their face full on and we had whatever they were wearing. So when you’re standing outside the bathroom and they’ve been in there and you think, maybe they should have been out by now, it’s the next person who goes in say, excuse me, my husband has dementia. If you see him in there and it looks like everything’s okay, great. But if not, could you maybe either let me know or steer him out this way?

 

Nancy Treaster

good idea.

 

Sue Ryan 

That was one of the things. And then when we went to a restaurant, one of the things I would do is I would call the restaurant ahead of time just to ask if they did have a family bathroom so that I could make sure I was the one going to the bathroom with Jack. Then the other option was if they didn’t, then I would reach out to someone else we were going out to eat with and have one of the guys become a bathroom buddy and part way through dinner they would say, I’m gonna go to the bathroom, Jack, do you wanna go with me?

 

Nancy Treaster

That’s better than just standing outside the bathroom like I did lurking.

 

Sue Ryan

and it helps preserve their dignity.

 

Nancy Treaster 

So we have the really, really early signs, not flushing, looking for the bathroom, putting toilet paper in the trash can, et cetera. Usually incontinence actually starts with urinary incontinence. So it does start with them not getting to the bathroom fast enough. And think of it as the reverse of potty training. So think of it as a two -year -old who’s just been potty trained, and sometimes they get there fast enough and sometimes they don’t.

 

That’s sort of the situation you’ll be in in the very beginning. And the reason I talk about that now is because part of what we’re gonna do to prepare for incontinence is start to research how we can minimize the embarrassment when it comes to that first real step into the early stage. But before we do that, let’s talk about the first tip.

 

Sue Ryan 

Okay, the first tip, which is something that I did, is talk with your loved one before it’s coming. They’ve been diagnosed, but you can still have great conversations with them. If there are any areas of discomfort, you can get through that and you can talk with them about how you feel about it and you can have them talk about how they feel about it. So you’ve already kind of walked through that.

 

The other part of that talking with them about it is also, and Nancy, you’re gonna get to this in a minute, is helping have conversations about, hey honey, Incontinence is going to come and we’re gonna have things that are gonna help you with that. Let’s experiment with them now to see what feels comfortable for you even before you need them.

 

Nancy Treaster 

Very good idea. And I do agree that talking about it would be a fabulous way to start. So if you are in the situation where collaborating with your loved one is something that you believe is a good idea and you can make it happen, way better than just quietly helping behind the scenes, which is what I ended up doing.

 

Sue Ryan 

And it’s okay, this is a huge thing. We talk a lot about the discomfort areas. It’s okay not to be okay. It’s reasonable, especially if we haven’t talked about it, that one or both of us is gonna be uncomfortable about it. And yet it’s so much easier if we go ahead and start talking about it now.

 

Nancy Treaster 

I highly recommend tip one.

 

Sue Ryan 

How about tip two, Nancy?

 

Nancy Treaster 

Tip two is useful whether you have had the conversation or not. Either way, you can begin helping behind the scenes. So I alluded to what’s coming. The very first thing that’s gonna happen probably is they’re not gonna get to the bathroom fast enough. It’s usually gonna be urinary incontinence. And so they’re gonna stain their underwear or it’s gonna be running down their leg a little bit. Very embarrassing, they’re gonna be horrified. So one of the first things you can do is research the kind of underwear they’re wearing today and research what might be next. What might be next is washable urinary incontinence underwear. They sell that, you can just Google it. There’s lots of different styles. For women, there’s a lot of panty styles, it’s washable. For men, there’s jockey styles and there’s jockey briefs. There are no boxer shorts when it comes to incontinence. So if your loved one is a male and they’re in boxer shorts. This is a good example of something you can begin the process early by getting them out of those so that it’s an easier transition when incontinence starts if you can get them to wear some different kind of underwear now. Either way, get online, research washable urinary incontinence underwear, take a look at what it looks like and then try to adapt their current underwear to look as much like that as possible. So for example, my husband wore white jockey briefs and there are no white jockey briefs in incontinent underwear. Number one, you wouldn’t want that because they’re going to have urine stains in them. So that would not be good. They’re mostly in the men’s styles, black and gray, which also works out nicely because the depends are actually light gray and dark gray for men. You can get white for women, but mostly they’re light gray and dark gray for men. So I just slipped jockey, black and gray underwear into his drawer. Slowly started taking the white underwear out and over the course of a very short period of time, we had only black and gray underwear. Good example of the reason I’m telling you this is I did it, but I could have done it much earlier. So I’m sharing this with you so you might take advantage of this tip way earlier in the process rather than waiting until incontinence is almost coming and then rushing around trying to help them with the transition.

 

Sue Ryan 

Yep.

 

Nancy Treaster 

So do your research on urinary incontinence underwear. I’d actually suggest that you look at some that have a couple of levels of absorbency, light and medium at least, so that you can transition even inside of urinary incontinence underwear before you have to move to depends. However, if you have an open collaborative conversation like Sue did, you can maybe even skip that step. So Sue, you wanna give a quick example of how you managed it with Jack?

 

Sue Ryan

I wanted to make sure, and this gets to the dignity part and the comfort part. I wanted to make sure that Jack was as comfortable as possible when we knew that he would ultimately be in Depends. And so we had the conversation about let’s experiment with different kinds of underwear now and see what you’re comfortable with or not comfortable with. And so even when you can’t be part of the decision, I’m helping make the choice that makes you feel the best.

 

Nancy Treaster 

And the more collaborative you are, the easier it is to have a conversation versus slipping it in like I did. I will say that slipping it in worked great. So when my husband did have to transition to urinary incontinence underwear, he put on the light version. Yes, there’s some padding in his underwear. He kind of patted it like something’s not quite right. And then he continued putting on his clothes and that was the end of it. So it was an easy transition, but not one we had a conversation about.

 

Sue Ryan 

And something I’ve heard in support groups that was very helpful when people were talking about that is that as they were transitioning and starting in the beginning, sometimes having the regular underwear and sometimes having the incontinence underwear or sometimes having the Depends and their loved one might say something about it kind of in the transitionary period of saying, the other ones were in the laundry, sorry about that, let’s just use this today and I’ll get the laundry washed so that they are more receptive to wearing something that’s different.

 

Nancy Treaster 

Good idea.

 

Nancy Treaster 

Very good idea. Also, it’s called underwear. I see in the support group sometimes people calling them diapers. The response from the other people in the support group, online support group is not very nice because honestly, we’re talking about their dignity. You really want to talk about their diapers? That’s so horrifying to me. It’s their underwear. Let’s call it underwear and give them some dignity.

 

Sue Ryan 

Yeah. And they’re not, they really are still underwear. They’re just a different kind of underwear. 

 

Nancy Treaster 

We talked about researching also cleaning your care receiver, understanding kind of what to expect in that regard. I think one of the best things you can do to research how to clean your care receiver and be ready is just listen to episode 11, where we talk about cleaning your care receiver. We’re talk about a lot of products there so that you can get yourself prepared, have the products ready when you see these really, really early signs so that you’re prepared when the day comes and you do need to take advantage of them.

 

Sue Ryan 

Yeah, and they’re cleaning products for your loved one. 

 

Nancy Treaster

Very good point. And if you do all this research, it helps, back to what Sue was saying originally, to be more confident, which helps you in your ability to be emotionally and mentally prepared for incontinence, which is a difficult thing to deal with.

 

So you wanna go on to the next tip?

 

Sue Ryan 

Absolutely. And tip three, I think is one of the most important for us, which is preparing ourselves for this. And, you know, there is a lot going on. we’re not always in control. There are things that we don’t know about. And when we think about this, you know, I didn’t go to school to understand about incontinence, much less to understand how to navigate incontinence with my loved one, knowing that this is going to become more and more, and all day and all night part of their journey. So it’s reasonable for us not to be okay about it. And it’s also going to impact us in several different ways. One of them is physical. Physically, are we strong enough? And are we going to be able to be the person who can care for our loved one when we’re helping them change, when we’re working on their balance, while we’re changing them in all these other areas?

 

Nancy, you’ve got a great story for that for yourself.

 

Nancy Treaster 

I did, I recognized when things started getting difficult and about the same time in multiple areas and incontinence being one. I’m a runner and I did a lot of running, but I did no strength training whatsoever. And it was clear to me at this point, I needed to build some upper body strength. So I actually started doing strength training specifically focused so that I could be a better caregiver.

 

Sue Ryan 

Yeah, and there are people and people in support groups talking about this. There are people you’ve got one of the spouses very small, the other one much larger and it could be a sibling, could be whatever. But when there’s a huge size and weight differential, because a lot of what you’re gonna be doing is working with their balance. One of the things you can do very early on is practice that and say, if I had to get you up, am I strong enough? Can I actually do that?

 

And then give yourself grace because if you’re not and you know that that’s going to be a part of your journey, you’re not going to be able to deal with it. Now you can be looking at other alternatives. Some people have had this be the trigger for when this begins, they’re going to move their loved one into a care community because the incontinence is during the day and at night and they wouldn’t be able to lift them and get them up and things like that. So give yourself a lot of grace in this and practice and get used to it, can I physically do it? And then there’s also,

the emotional and the mental side of it. This is not something, again, that we went to school for. So we haven’t talked about it. Find someone to share about it. If you’re uncomfortable with this and this is something that’s very emotional for you, don’t keep it inside. Talk about it in your support group or get counseling or talk to a family member. But make sure before this is a bigger deal that you’ve already had a chance to mentally and emotionally deal with it.

 

So you’re able to make the wisest choice for when it does actually happen.

 

Nancy Treaster 

I think honestly being okay, give yourself some grace. This is where a lot of people just say, can’t do it. This is not something I can do and that’s okay.

 

Sue Ryan 

It is okay. And the thing that you don’t want to do is do something, say like, and I hear this so often, well, when we got married, we pinky promised we were going to take care of each other. And this is for better or for worse. So this is the “for worst” part. So this, I’m going to be doing this. Well, my uncle’s a very good example of this. My grandmother was quite petite and my uncle’s like, I got this, I can take care of her. So he’s bathing her, he’s lifting her up, he’s toileting her and his back started hurting and his knees started hurting and he was also getting depressed and they finally brought in a nurse and she said, no, you’re not doing it right at all. It’s reasonable. You don’t know how to do this and you’re not really qualified to do it. And this is what happens a lot. She told stories about how terribly it had impacted the caregiver because they were trying to do what they felt out of a sense of obligation and they weren’t physically able to do it.

 

Nancy Treaster

And you know, that also goes to the point of, and if you’re upset about it, unhappy about it, physically feeling bad, terrible about it, you’re not going to be able to help them preserve their dignity. You’re gonna be mean. You’re not gonna be able to put a smile on your face and make them feel okay.

 

Sue Ryan 

And Nancy, you’ve got a great story about that from your care provider.

 

Nancy Treaster 

When I first hired a part -time caregiver, one of the first things I noticed, and this was right about when Incontinent started, when I got a part -time caregiver. And she was so positive about everything. Great job, good job, about everything. And I could see the change in my husband’s face just in his emotions because of her confidence, her comfort. This is okay, it’s not a big deal. She made him feel so much better about all the Incontinence issues. And honestly, I was able to adopt that approach because I realized how much of a difference it made in him.

 

Sue Ryan (21:52.087)

It validated him and he felt good because he wasn’t sure how he should feel. And again, this is like a two year old. They’re not really sure if they did the right thing or not. So with your loved one, it helps validate them and have them feel comfortable. Even if they’ve just pooped all over the floor, which is probably gonna happen at some point in time, but it helps for them. It’s also gonna help you be able to care for yourself and for them. If you allow yourself to have that positive mental attitude and that.

 

Nancy Treaster 

Yes.

 

Sue Ryan

Positive reinforcement for them so that their emotional state stays calmer.

 

Nancy Treaster 

Yes, agree, agree. Okay, well, that sets us right up for tip four, I think, which is about giving some grace to the rest of the family. You wanna talk about it first and then I’ll tell a story?

 

Sue Ryan 

It’s so helpful when we recognize that there are other people who are going to be part of the caregiving journey with us. It’s going to be family members. It could be very close friends. And while we have determined what our relationship is going to be with incontinence, we want to make sure that anyone else who might potentially be part of incontinence, if they’re going to be watching someone and your loved one has to go to the bathroom, that they’re okay with that. And

 

If they’re not, give them grace upon grace. And the earlier you have these conversations as well, the easier it is for them because in the back of their mind, they’re gonna be going like, well, I really wanna help care for them, but I don’t know if I can do the bathroom thing, you know? And so we wanna just go ahead and face it right up front and be very gracious about it, whatever it is. And you’ve got a good story about that, Nancy.

 

Nancy Treaster 

That’s exactly right. And I do. And I talk about it with Merritt in episode eight, where Merritt and I talk about being a young adult and helping take care of your parent. I relied on Merritt several times before I had any caregivers to help me take care of my husband if I had to go out of town or do something and he was no longer capable of being left alone. So, after incontinence started, in the middle of all this, I think I asked him, could he come stay with his dad for a few hours? And he was smart enough to realize, you know, that he’s Incontinent, right? At this point. And so he said to me, Mom, I don’t think I can do it. And I said, why not? And he said, because I don’t think I couldn’t change him. I’m not comfortable with that. Well, I, number one, I shouldn’t have put him in that position. Thankfully he was bold enough to say it. But had I had the conversation up front like you’re suggesting Sue, had I thought it all the way through and said, before I asked someone to come take care of them, I need to talk to them about incontinence, that would have saved him from having to be bold. He shouldn’t have had to do that. I put him in an awkward position and that’s unfair. 

 

Sue Ryan 

And give yourself grace on that as we do with everything. Give yourself lots of grace. We’re learning. Yeah.

 

Nancy Treaster 

I will, but it’s a lesson learned. Ask upfront because incontinence is not for everybody, it’s not for very many people, to be honest. It’s a hard topic and certainly not one that you should expect other people to deal with.

 

Nancy Treaster 

So let’s summarize. This is the first episode in a five-part series on incontinence. In this episode, we talked about preparing for incontinence and we shared four tips. The first tip was about talking directly to your loved one about it before it even starts. The second tip was about research, researching underwear, researching cleaning your care receiver so you’re ready. The third tip was preparing yourself physically, mentally and emotionally. The fourth tip was about giving family members and others permission to set boundaries and give them grace and opportunity to set those boundaries. 

 

If you have tips that you think would be helpful to people, in addition to these, please share them on our Facebook page, the Facebook page is in the notes, or on our Instagram page also in the notes. And if you like this podcast, please subscribe if you haven’t already, and rate and review our podcast as well. That’s in the show notes as well. And finally, any products we discussed here in this podcast are also links are in the show notes for those too.

 

Now we talked about incontinence and we’re talking just about the beginning and the early part. Incontinence is a big topic. Already you might feel a bit overwhelmed. There’s a lot to think about and a lot to sort of get your head wrapped around here. But by preparing and researching, you will get in the right frame of mind and be better prepared to handle this.

 

Sue Ryan

We’re all on this journey together.

 

Nancy Treaster 

Yes, we are.