Hearing Loss LIVE! Talks Friends and Family

Our hearing partners play an important role in our hearing loss journey. Yet, often times we don't involve them. Is it because we are carrying the burden all by ourself? What if I were to tell you, your hearing partner may be carrying the burden too?

Communication changes with hearing loss. We talk about the collateral damage in our podcast with Gloria Pelletier. Only we can control that collateral damage.

But it must be a work in progress with both our hearing partners and ourselves working for a doable communication goal. And it starts with three simple rules:

1- Get each other's attention
2- Face each other.
3- Be within 6 feet.

Want to learn better hearing strategies? It starts with our lipreading concept class. Attend as a couple a recieve a two-for-one deal. That's two of you for only $50! Check out our winter schedule at hearinglosslive.com

Transcript

0:00

Hearing Loss LIVE! talks, friends and family communication.

Julia: 0:06

Good morning. Welcome to Hearing Loss LIVE! Today we are going to talk about friends and family and communication. So communication breakdown is just part of hearing loss. But how you handle it as we talked in our collateral damage podcast is going to affect your relationship long term. I've known Shelly, probably 10 plus years, we've all gone camping together. And it's always interesting to watch how folks interact and learn communication rules and what they mean. My grandma's passed away or she'd be here, brother here somewhere who knows our communication, we didn't even realize how much we work together with the hearing loss until I started actually learning things through our local Center for the Deaf and hard of hearing and HLAA classes. Support groups are very important, not just for those with the hearing loss, but their hearing partners learn better skills. They actually can make a support group themselves because sometimes we need it right there were there were days that sadness happens and you don't know how to handle it. So having others on the journey with you may mix. It's hugely important, right? My husband has a mild hearing loss, but we've been practicing hearing rules for so damn long. I don't even know that we realize half the time when he has it other than when the TV is so damn loud. I'm ready to have an absolute meltdown. But Chelle, tell us about your adventures with Ken because I'm sure it didn't start out as an easy adventure. And I think folks need to know it is a it's a work in progress. Right? No matter how long it's been.

Chelle: 2:05

It's continually a work. I mean, you know. Well, first of all, today is a special day because I get to bring my husband to work today. That's Ken, my husband say hi. You know"hi"

Ken: 2:23

Hi.

Chelle: 2:24

[laughter] We've known each other for 15 years as of September. We met at Burning Man at night in the dark. Me, no hearing aids. I would not wear my hearing aids at Burning Man because I didn't want dust and clogged microphones and the hearing aids to stop working. Hearing aids are much too expensive to lose them. And to get them dirty and then get them cleaned and parts replaced and all that so never hearing aids Burning Man. I always left him at home. We were at night on an art car dancing. And it was loud music. And he did come up to me. And he was sort of dancing, too. And he's he asked me. His first words, where will you be my playa[??] love?

Ken: 3:25

Oh.

Chelle: 3:28

[laughter]And I said?

Ken: 3:30

Maybe.

Chelle: 3:33

[laughter]But it turned out we spent the rest of the night together. And I'm pretty sure I was upset, upfront about my hearing loss. And, and communication needs. I wasn't as much of a self advocate back then. But I do believe I was up front about things. What do you remember from that night?

Ken: 3:55

I remember you told me you couldn't hear very well. We kind of worked through it.

Chelle: 4:01

Yeah, we were in the dark.

Ken: 4:04

I mean it was loud.

Chelle: 4:06

Yes. We're finding our rhythm here. People give us a minute. So we've been together for 15 years. And I had a big drop right before moving up here with my hearing. So when I went to work at the salon, I remember it was very hard for me because I didn't have coworkers anymore who would help me. I would come home at night, and I think I would pretty much throw myself on the bed and cry. And one of the things I remember is him laying next to me not knowing what to do or how to help but just being there. So so that was nice. Do you remember anything from that?

Ken: 4:59

Not A lot.

Chelle: 5:00

Okay, so moving along, we have established communication rules of, you have to get my attention first, you have to face me the whole time and be within six feet. Be in the same room in this house because it's so small. We have issues, it's better, but we still have some communication issues. And this is where the collateral damage that we talked about a month or so ago comes down. There was a night not long ago that you told me, Ken, that you were very sad that I couldn't hear you and watch TV at the same time.

Ken: 5:56

It complicates things a little bit. Just have to learn not to talk when aTV's on or a movie.

Chelle: 6:07

Well, we do a lot of pausing actually. And then eventually, you know the movie that was an hour and a half is two hours long so that we can talk.

Ken: 6:19

That works.

Chelle: 6:20

So any movies a little bit longer than it can be. But that's okay, do you? Go ahead, Julia?

Julia: 6:28

Ken, tell me what makes you sad when you can't talk while you're at home watching movies? What about that do you miss?

Ken: 6:37

Chit chat I guess. You know, you have to just reach ourselves and just staring at the TV.

Julia: 6:47

So chit chat in general, or chit chat about the movie?

Kent: 6:51

Sometimes the movie sometimes other stuff comes up in my mind.

Julia: 7:00

Because that was a that was one of the problems. Not a

Chelle: 7:00

[laughter] Yeah. problem. A sadness for me with my grandma. When we just

Ken: 7:05

Yeah, definitely cuts into it. couldn't chit chat anymore.

Julia: 7:14

It was definitely something that a hearing partner feels and needs to be cognizant of. How you change that, so that you can continue to have different conversations, right? Or how like pausing the TV.

Ken: 7:29

I know I won't remember later. So I kind of throw it out there then for what it's worth.

Cgelee: 7:37

And he gets my attention. Now when he really wants me during TV. He's learned to say "Chelle". That will catch my attention faster than anything because I've been hearing that word for you know, 55, almost 55 years [laughter]. So Chelle is the one thing that will grab my attention. And I, I usually have the remote control. And I pause it. And he can tell me what he is thinking or thoughts about the movie. A lot of times it brings up memories and he wants to tell me in memory. We make it work. But it is sad sometimes I think for both of us. But it's nothing that's going to destroy the marriage or anything. It's just every day little stuff that happened with hearing loss. Last night, we had a little hearing issue. I was probably on my phone just come up from work. My head is busy. I was texting I think two different people at the same time. And Ken says he asked me for help with dinner. I didn't hear it. So later on, I heard a lot of commotion in the kitchen. And I went in and I asked him if he needed help. And

Ken: 9:14

I asked you earlier but you ignored me. he said

Chelle: 9:21

And I didn't ignore him. I really didn't hear him. So we're not sure when he asked me. Nether of us are sure when he asked me. But I'm guessing it was because you didn't say Chelle first. He wasn't looking at me. Or I wasn't looking at him. Most importantly, I have to be looking at him. And he could have been in another room. He could have been in the same room. We don't remember that part. So we have to do some corrective repair strategies. And what do you think we can do better?

Ken: 10:01

You have to back track. Figure out what went wrong? Plus I was hungry.

Chelle: 10:08

I was late. I was coming up from class and a few meetings, so he was hungry. So he forgets to easily when he's hungry, we all do hangry. Are you laughing at the captions?

Ken: 10:22

Pretty much?

Chelle: 10:22

Yes, we have arguments with our ASR captions often. And my speech I think, has not been all that clear lately, because it's off a lot. Ken No, I don't think so. Okay. Okay. So anything you want to add about last

Ken: 10:49

No, we could have done better. night?

Chelle: 10:51

Yeah.

Ken: 10:52

But it worked out in the end.

Chelle: 10:54

Damage happens. You just move on. I think one of my things was last night was just to take a step back and realize that wasn't totally my fault and not take it so personally. Sometimes we have to do that with hearing loss. Don't take it personally. Right?

Ken: 11:24

Mm-hmm,Yes.

Chelle: 11:25

And what else? Go ahead, Julia.

Julia: 11:30

Oh, I don't know. I was just -- So it's interesting to me, because I don't think any time I took it personal when grandma and I had bad communication, and I never really blamed her hearing loss when we had bad communication. It was just always, you know, do it better next time. I guess. I don't know. So it's interesting, because I don't think, Chelle, you're alone, that a lot of times the person with hearing loss takes it as all their fault, right? So how, as family members, can we work better at owning, trying to think how to say this, owning our portion of the three rules, right? Our three rules are big, we teach it in our lipreading concept class. And until you know, those three rules by heart, everything else is like, I don't know, 110% harder, right? So if I know as a as a as a captioner, if I know as a family member, to keep those rules in the front of my head and keep in mind, still things are gonna happen, you're still going to try to talk to each other from another room. We don't know why we do it, we just do it. Right. So--[laughter]

Ken: 12:55

She can do it, but I can't.

Julia: 12:56

Well, and we try to use the rule that that doesn't happen, but it still does. And we you know, again, we've been using the rules for 25 plus years here. So how do we get hearing partners to own their portion, one. Or are they and they're taking it personal to and they're not telling the other person? But how do we get both parties to be upfront with not taking it personal? Does that makes sense? How do we get better ownership? Ken?

Ken: 13:35

I think you just have to backtrack and try to figure out where you went sideways and start from there.

Chelle: 13:44

And do differently next time, try.

Ken: 13:49

It's easy to let your guard down. And, you know, skip a rule or two and [laughter]

Chelle: 13:54

Well, you know, he's used to living in the hearing world and all his life before me was in the hearing world. I don't think I was his very first hard of hearing person. But I was his first relationship with hearing loss, I believe. So he's used to that end of the world. And I think it takes reminders even after 15 years.

Ken: 14:21

Yeah.

Chelle: 14:22

You know, it's easy to forget. One of the interesting things I just now remembered and we talked about this in our last podcast with Dr. McBride about bringing your spouse with you, significant other, friend, child to a audiology appointment. And I know I made Ken go when I got my current pair of hearing aids. And this is about seven and a half years ago? Because they're my hearing aids are eight years old. But it made a huge difference. [microphone noises in background] to have him there with me to help explain to the audiologist wasn't, what wasn't happening at home or in the car specifically, we were having really big issues in the car at that point. So you didn't go through a hearing test with me did you?

Ken: 15:20

Nope.

Chelle: 15:21

You will next time.[laughter] But it was, it was, it was like the audiologist. You know, they get used to me and you know, it's just me kind of complaining. [luaghter] But when the significant other comes in and say these are issues, it makes a difference. Do you remember anything from that? That was a long time ago.

Ken: 15:48

Yeah quite a while ago. They just put you in the room. Pushed the buttons, [yeah] you know. Tried to program it well, but we still have problems in cars. I don't think you're ever gonna get around that one.

Chelle: 16:02

No, Julia can talk about that, too. [laughter]

Julia: 16:05

My car voice. Ken has a car voice, too, by the way. I don't know if Chelle knows that. She probably hasn't figured it out. Well, she probably has and doesn't realize it. But like when we were camping and doing the driving, Ken was talking about all sorts of things. And I was answering him. random stuff. I couldn't even tell you what it was we were talking about and Chelle's probably just holding on for dear life, but[laughter]climb up or no. Communication in a car is difficult. I don't any any type. But you know, you can use the microphones. You can't really use your ASR apps, because, well, unless they're the passenger you're talking to. I guess we could. We should try that one time, Chelle, [yeah] I thought about that. Well, we've been told to try it and keep forgetting, I think. So I think it can be difficult. But you know, other than my talking to other cars, I'm okay writing quietly in a car, I'm happy to read. I'm happy to do whatever. Other than I need to tell the other cars, what I think of them quite regularly, [laughter]. You know, some things that come to mind, not only do I think your hearing partners, whoever it is, should be involved in your audiology, I think they should go home, turn the sound off on the six o'clock news, and see how long they can lipread, and then understand why they need to take a class to understand better concepts with lipreading. Because I think hearing partners just think it's automatic, right? Oh, you've had a hearing loss, you can just lipread. I think employers think you should be able to do it eight hours? Well, you know, boss, maybe you should go home and see if you can do it for eight hours. And you know, how many times is the anchor turned around and look at the weather map? And how many times did the anchor turn to look at this map? You know, and you lose? I don't know, I just there's a lot of things that I think hearing partners should be involved with and know about from day one. And this is another one, is it because the person with hearing loss is afraid, like, is it again, this is my problem. So I need to fix it. And not saying I want you to be involved or or just just a thought process? I don't know that there's an answer to this. But I just want people to think about it. Are you, are you not asking for help? Because you think it's your burden to bear? When the truth is it's gonna be both your burden whether you want it to be or not, it changes your relationship relationship. Right? So anytime you have a hearing drop, there's going to be changes in everything, don't you-- I mean that's my personal thought? With you know, what I went through, but thoughts in that direction on how how to better make your partner be involved. That makes sense. Come to our workshop. [laughter]

Chelle: 19:17

How do you think we can get people more involved with the communication process?

Kne: 19:21

I think they have to want to. I look at my friend Brian and Kim and he has a badt hearing loss from being in helicopters for 25, 30 years. His wife has kind of a non-believer and all of that. I don't think she really helps him out much. He's working on it with her.

CHelle: 19:41

Yeah, it's a change. It's hard to get people to understand. You know, I remember blogging away 10 years ago, five years ago, blogging away and sharing it with you and my mom all the time. I think that kind of when you guys started to understand more about my hearing loss and Ken learn I needed a lot of editing when I'm writing. My mom, too.

Ken: 20:17

Everybody does. So I think sharing your thoughts is major important. Like take, take an example from your day, and share exactly what it was like with your significant other. You know this, what your thinking was, where it went, how it went out, and how you could pull it back or didn't and how, and involve them and how you can maybe make that better next time. Maybe that partnership would help make it go along better. So I like to take instances from my day. Like I remembered last night. And think, okay, what can I do better? And I did talk to you a little bit about it this morning. And we worked through it. but still-- Will do it again.

Chelle: 21:16

Yeah, that's I was gonna say, [laughter] it's gonna happen again. But that's okay. We, I think we, after 15 years, we understand each other a little bit better. A lot better?

Ken: 21:33

I think we do pretty good.[laughter] You know, there's times when we fall apart and we forget something and it happens, and it will happen.

Julia: 21:45

That knowledge.

Chelle: 21:46

I forget my part too. Sometimes, you know, I teach all this stuff. I preach it. And there's every once in a while, where I'm too tired, or I got too frustrated. And I forgot everything I know how to how in how to make it better, too.

Julia: 22:00

All right, we're coming up on the end of time. Any other thoughts? So--

Ken: 22:11

I think you need patience and understanding and you need to be impassioned, compassionate. What's the word?

Julia: 22:20

Exactly. Exactly. And work together. I think the big Empathetic. thing is working together makes all the difference in the world. All right. I lost my train of thought, Oh, next. Next week, hold on. I put my calendar up on purpose. Yeah, next week on the 15th of November from six to 730. Mountain Time, we will have our conquering your next family gathering. Back by popular demand. And you can come learn strategies for that next family gathering you will be having. Masks, no masks billions of people. Aunt Mabel and her bunion on her toe. Learn how you too can figure out how to set your scene so that you could have the best hearing experience and or lipreading and or learn how to be in or out. So join us for that. If you haven't signed up already at hearinglosslive.com. I'm sorry, the dogs are scratching on the door. [laughter] So that will be in the background. Our next Talk About It Tuesday will be December 6. Come tell us how your Thanksgiving when did you set yourself up for success? Look for our new classes to start rolling out. We will have our lipreading concept class. We encourage you even if you are a lip reader already. Take this class. It's one of a kind. We don't know of anybody else who offers it. It's only $50. So it's really a great deal. And you can get better ideas on the concepts behind lipreading and it will help you with lips shapes and understanding. We also have our lip shape class that's being rolled out and it's a little different than what's offered at most places and Chelle and I are working hard right now to put that together for you. We will have more workshops and other events happening in 2023. So we hope you join us. Help crowdfund us. Help us keep moving forward so that you can enjoy these great blogs and podcasts for years to come. Thanks for joining us. Bye.