Amalia thought she was more involved than she was. Like, she had hands on, but she really wasn’t doing any guiding. But I would let her, encouraged her to be aware and to know what was happening and how to do it, all that good stuff. She did well. But she did well I think because there was just this really general approach: I mean, the medical stuff was just very matter of fact.
Mother of Amalia, age 9
I didn’t know how I would handle it
That was probably one of the scariest things, that I was the only one who knew how to cath him. My husband didn’t watch, he couldn’t at the time, and if Jared’s bladder fills up it could explode! And I’m not a nurse – I don’t exactly faint at blood or anything, but I didn’t know how I would handle it.
Honestly, I didn’t have a whole lot of time to learn. That was probably the only downfall. And I think that’s true with everything and anything: the nurses know how, they do this every day, it’s no big deal to them. They teach you and they think that you know it…just because you know it, you have no problem with it, and just because you teach me, does not mean that I totally got it! You know, we think two plus two is easy, but trying to teach a three year old to remember that, it’s a different story!
Getting over the fear, it was teaching other people so I didn’t feel like I was the sole person. So my father learned, my sister-in-law came in a couple times, the visiting nurse service was wonderful with us. I think it was my father-in-law first, and of course my husband. And I had a little bit of back-up who at least felt comfortable learning with me so I didn’t feel like the sole person.
Mother of Jared, age 6
I had to get myself beyond the tension
A lot of Isaiah’s needs were medical, and that scared the daylights out of me because I’m squeamish…the first surgery, Isaiah’s ureters were to the surface, so there were holes there…and if you’re a squeamish person, and then for it to be your own kid…I couldn’t change the bandage! We had to change and clean the areas and bandage it: that was the technique, and I couldn’t do it. My husband did it and the nurse was like, “No, you are going to have to learn this for him to go home.” I remember leaving the hospital, just crying my eyes out that he wasn’t going to come home because I wasn’t able to do it! So my husband, we agreed that he was going to do it and I would learn gradually. For every medical need, like when he had to have the shots, my husband started it until I got comfortable. When we needed to catheterize him, he started it until I got comfortable. It was like I had to get myself beyond the tension and the worries that I wasn’t going to do it right or I was going to hurt him or it was just hurting me to do it.
Mother of Isaiah, age 17
A work in progress
It was scary at first, right? I couldn’t imagine her having to use a catheter herself. It was a little tricky at first. It took her about a week to get comfortable with it.
At first she wasn’t doing it right. She was like, “I think I got it working, I think I’m doing it right!” And then I was like, “Well, how much urine is coming out?” and she was like, “Well, none.” I’m like, “Then I don’t think you got it in the right spot!” So that was a work in progress! I want to say that lasted about a week, and once she did it for the first time, once urine actually came out, she was so excited that she finally did it! Then after that it was, like, “Oh okay, I can’t believe I was doing it wrong all that time.” Then she was pretty confident with doing it, like, “Wow, that wasn’t really a big deal after all!”
Mother of Gabriella, age 12
I knew the nurse wasn’t going to be able to do it. I knew Meghan wasn’t going to be able to do it. I knew people were going to think I was crazy because I knew there was going to be screaming and crying and yelling and pushing. And it couldn’t be my husband and it couldn’t be anybody else, it had to be me…but within a day of doing it, she let me do it without a single problem.
Mother of Meghan, age 8
Getting the hang of it
We had this whole set-up for a while, with the light, the mirror and the stool and the whole thing, and that was probably like, I don’t know, another month. And then she was like, “Eh, I don’t need that.” And she almost never has an accident now. She’s almost always completely dry. Every once in a while she’ll have a tiny bit of wet in her underpants but she knows instantly. She also knows instantly when she needs to go, which she never knew before. She had just never had the sensation, I think, of fully being dry. She didn’t know what that felt like.
Mother of Meghan, age 8
When it’s your daughter, it’s different
Learning to cath was easy. But I have medical background, I don’t know if that helps. But it was even difficult having a medical background, because when it’s your daughter it’s different, you know? … It took her from June 2008 to almost 2009 for her to catheterize even without looking, without a mirror and all that set-up…You do it so many times a day that I think she even knows how to put it in without looking, because it’s a feeling thing. She does it right away, she doesn’t need the mirror and all that complicated thing.
Mother of Naomi, age 10
Very uncomfortable for me as a mother
Being in a nursing background, I know how to catheterize, and in fact, before this whole procedure happened, I was talking to Alexa about the whole thing. But it was very uncomfortable for me as a mother, because I’m seeing my daughter’s private parts that I don’t want to see. And then she said, “Would you do it for me, mummy?” And I said, “I would if I had to, but you’re 17 years old and you have to do this yourself. But if it came down to your not being able to do it…” of course I would do it for her.
So I held the mirror and things like that while Alexa was trying to get the whole dexterity technique down, because you have to hold the tube a certain way and you don’t want to contaminate it and things like that. And that was my concern, and I probably told Alexa a hundred times about, you know, washing your hands and making sure you’re doing the technique properly so you don’t get any urinary tract infections and things like that – because there’s all kinds of bacteria around that you can’t see that you can pick up, and then you’re putting that catheter right inside your body that can give you an infection.
Mother of Alexa, age 16
The nurse was invaluable to us. She taught us how to cath, and I was just…with all the social stigma that I went into that meeting with, sweat was rolling down my face. I thought I could never do this. The nurse just made it as easy as changing a diaper. And she was a wonderful, wonderful person and a great nurse.
Father of Ellie, age 8
Having a bad day
Both my husband and I are in the medical field, so other than the fact that it’s a little bit different on a smaller anatomy, we had experience with the cathing. But having said that, when she was an infant and we had to do it, there were times when I couldn’t get it or my husband couldn’t get it, and we had to call the other person in and say, “I’m having a bad day! Come do this for me.” … When she was learning to cath and getting through that frustration, it was really difficult because she’s a perfectionist. There was a lot of that, “I should be able to just pick this up and get it done!” So we did a lot of talking with her about, you know, “You didn’t learn to walk in a day. Nobody does.” And she has a younger sister: “You know, she wasn’t potty trained right away,” – so emphasizing that it was a learning process and then congratulating her every time she got it done.
Mother of Siobhan, age 9
It got to be very routine
Both of us had already learned because of school but got very proficient at it, to the point that as time progressed I had a little mini-flashlight, probably two inches long, and you would go in at night to give her a cath in the middle of the night and stick the flashlight in your mouth and cath her in the dark, because that way you wouldn’t wake her up. It got to be very routine. She’s a pretty good sleeper and of course she’s not feeling everything down there, so you’d cath while she was asleep and she’d just stay asleep!
Her grandparents learned and they were okay at it, and then she moved on to learning how to do it herself, which has changed things dramatically, because now we have two kids who are fully toilet trained so to speak…
As they’re learning a skill like self-cathing, it’s helpful to reinforce early that it’s about practice. Throwing horseshoes, putting a golf ball, putting the basketball in the basket – doing it once doesn’t mean you can do it again, over and over predictably. You have to keep practicing and you’re going to have bad days and that doesn’t mean that it’s the end of the world.
As I say sometimes sarcastically to some of my patients, “I want to set your expectations low so I can meet them.” And if you set their expectations low – that what we want you to do is we want you to be able to find this piece of anatomy or be able to handle the cath without dropping it in the toilet, and anything beyond that is great – I think they’ll do better. Sort of low-pressure teaching.
Father of Siobhan, age 9
He had to pick it up really quick
I learned first, and then his father had to learn. I had gallbladder surgery and I was unable to bend over to help him…Ethan’s dad knew I was having the surgery, but he figured I’d come home and be able to pick up right where I was! So he had to try to pick it up really quick, and he did.
Mother of Ethan, age 13
Siblings and not caregivers
I was primarily responsible for catheterizing her but I work every Friday and Saturday night as a nurse so I said, “There’s no way! And what happens if I get into a car accident? Somebody else needs to be able to do it.” And a lot of people wanted us to teach our daughters to do it, our two daughters, who at this time would have been eighteen and twelve. They wanted me to teach my daughters to do it, but I really wanted them to be siblings and not caregivers – I really felt strongly about that. And my husband had been changing her diapers anyway, so we taught him how to cath her. So I would do it most of the time, but if I wasn’t around, he would cath her… It was actually pretty easy to learn. At first, I thought they were going to come a couple times, and here I’ve cathed adults, but I thought a kid would be different. The nurse told me what to order, and she came, and she didn’t even do it: she just walked me through it, and said, “Okay, here do it.”
Initially I would cath her lying on a bed, but where do you find a bed and how do you go to the store? It just becomes too difficult. So I transitioned to sitting her over the toilet. Some people use mirrors but she could feel if it was in the right spot, so we just tried kind of blindly cathing her… it just made it so much easier because we could go to the fair, we could go shopping, we could go on vacation.
Mother of Kayla, age 14