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Posted by: Anon for This One ( )
Date: September 26, 2018 04:50PM

I have Alport's Syndrome, a nasty kidney disease, hereditary, that tends to gallop through inbred Mormon plyg groups, as well as through the population in general. I have traced it back to my European-born great-grandfather. (I'm ot absolutely sure in his case, but he died in mid-life, which is the right time frame for males.)

It tends to destroy men at mid-life, but it doesn't affect women as badly. (My grandmother died of renal failure, but hey - she was 93.)

One of the side-effects of Alport's is hearing loss. I have (and use) hearing aids in both ears, and they help a LOT. However, my husband has taken to mumbling a lot, usually with his back to me, or in another room where I cannot see his face. Lip-reading is part of the way I "listen."

He is doing this so often that I can't count the number of times I have to ask him to repeat what he just said. It is frustrating to both of us. I have asked him several times to FACE me when he talks, and speak clearly, not mumble.

We have a good marriage - going on 30 years - so I don't think there are any hidden passive-aggressive agenda issues here. I am getting so frustrated with this that I may hear him say something, but if it makes absolutely no sense to me because I couldn't hear the actual words, I don't even respond. That way, he KNOWS that the transmission failed.

I can't turn my hearing aids up any higher than they are.

I already have explained this, just as I have explained it to you. So it's not that he isn't getting the message. But he can't seem to remember to face me and speak up. We are doomed yet again to a garbled transmission.

Any ideas? I am frustrated half to death with this situation.

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Posted by: ificouldhietokolob ( )
Date: September 26, 2018 05:04PM

Ideas (not necessarily good ones):

- he's got memory issues. Maybe a trip to the doctor for him?

- he's having a hard time dealing with your illness, and is afraid to lose you, so he turns away rather than face you (and your illness) head-on.

- he's used to being the center of your attention, and now that he has to go out of his way a teeny tiny bit for you, he's upset about it, and this is his way of showing it.

Just guesses. I hope it works out.

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Posted by: summer ( )
Date: September 26, 2018 05:40PM

My mom had significant hearing loss. My normal speaking pitch was often out of her hearing range. So in order for her to hear me, I had to face her, lower my pitch, boom it out slightly (but not *too* much,) and often repeat what I said. It was exhausting.

So it may be that what now sounds like mumbling to you is his normal pitch. It may in some ways be just as hard for him to speak to you as it is for you to hear him.

I don't know what the solution is. Ask him if it would be easier for the both of you to learn ASL. Or perhaps he could wear a portable microphone. There are probably communities online for the hard of hearing who might have some ideas for you.

Here's a starter page for ASL:

https://www.handspeak.com/

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Posted by: Amyjo ( )
Date: September 26, 2018 05:57PM

Have you thought of both of you learning sign language?

It's something you can do together and would also mean he has to face you when communicating. Then he could do both ie, sign and verbalize at the same time. It might make him more conscious of his verbalizing to you in a way that you can understand.

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Posted by: Anon for This One ( )
Date: September 26, 2018 11:53PM

I don't know if we have enough years left to learn a new language. On the plus side, we are both multi-lingual anyway.

I have studied ASL, decades ago, and was able to teach some to my then-toddler-aged son. He picked it up as rapidly as I could teach it. When he was 3 or 4 years old, I took him to a fair that was being put on by the Deaf community in the Seattle area. (I have forgotten just about all the ASL I once knew, sadly.)

In absolutely no time, he was "chatting" in ASL with other little kids. It was amazing to see.

I don't know that DH would go to ASL classes with me, but just suggesting it might make him realize how much I want to remain in communication with him, and how frustrating my hearing loss is for me.

Thanks for the suggestions!

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Posted by: Amyjo ( )
Date: September 27, 2018 06:12AM

My children are multi-lingual. That takes some doing.

I've heard it helps learning additional languages if you already know more than one. It might help bring a solution if you and your hubby can learn ASL together.

My grandparents learned to play the organ later in life as a mutual hobby. They could play by sound and chord, as well as sight read. They were both self-taught. It was always a treat when either would play for us when we'd visit, on their Hammond organ.

As for mumbling, that can leave even someone w/ good hearing scratching their head. My children mumbled some as kids. When it got to the point I thought maybe I was losing my hearing because I'd have to ask them to speak up, their grade school teachers would relay the same thing to me @ parent-teacher conference.

They eventually became better communicators as they grew up. Like you and your husband, they're multi-lingual. I wonder now if there's a connection to that?

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Posted by: elderolddog ( )
Date: September 26, 2018 11:58PM

From my perspective, you gave your own remedy for the problem: Your husband has to take to heart the admonition that in order to communicate successfully, the two of you need to be in sight of each other.

Why he is resistant to this solution is the question.

Saucie and I are in the same boat, but we know it and while we may bleat sheepishly at each other when we're out of sight, we know that it's a prelude to getting face-to-face. And that's always fun!

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Posted by: Kathleen ( )
Date: September 27, 2018 02:31AM

I went to visit my Pop one day, and his garbage disposal was running.

After a few moments, I said, “Pop, you want this garbage disposal running?”

“Eh?”

“The garbage disposal’s running!”

“Eh?”

“THE GAR-BAGE! DIS-POS-Al! IS RUNNINNNG!!!!”

“Eh?”

It must have been running for days.

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Posted by: Kathleen ( )
Date: September 27, 2018 02:44AM

I’m sorry about the Alport’s. Other than the hearing loss, I hope you feel well generally and outlive your granny by a good distance.

❤️

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Posted by: Kathleen ( )
Date: September 27, 2018 10:04PM

DH n I keep our cell phones nearby and often have to text each other from across the house.

In a book on lip reading (title?), the author said that it’s important to say more than less. For example, instead of “Let’s go to the store;” it’s better to add more information, “Let’s go to the store and pick up some groceries.” That provides more information for the hearer if they only grasp fragments of what was said.

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Posted by: midwestanon ( )
Date: September 27, 2018 02:45AM

My grandparents are the same way. Excepting the OP, where I understand the condition is genetic, it seems like hearing just declines over time like all of your other senses.

I sometimes think I have shitty hearing but you know what, AFTO? People mumble. You’re absolutely right.

It’s one of those bizarre modern informalities.

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Posted by: cl2 ( )
Date: September 27, 2018 11:28PM

My grandfather was also deaf, but he died when I was 3. My mother couldn't hear very well.

I just grew up knowing I had to talk so they could see my lips. Even my grandmother, who lost her hearing at age 1, was able to read lips.

When I read posts like this, it really makes me miss that part of my life.

We learned ASL without going to classes. We grew up with it.

I don't know how you can help your husband understand. Maybe a few marriage therapy sessions. I think that is where you can get help and maybe a therapist can help him understand.

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Posted by: Paintingnotloggedin ( )
Date: September 28, 2018 04:06AM

hi. I am so sorry to hear about this & am sure it makes both of you very very upset.

Where to start? First I like that you are texting even in the house. but what about when the battery's low/ (I carry a mini white board with my inhalers traveling for when I cannot speak during flu or cold To augment husband's speech reading skill. It just kills him when I loose my voice due to air quality allergy etc. So he put an air cleaner/hepa filter on an inverter in my vehicle lol. Haven't needed the white board since then)

don't even get me started on different hearing and different meanings understood let alone different phrases we both hear!!! but back before we left the church one thing we did was pray. Well i thought it was pray, but the hearing imparied guy was hugging me and telling me about his day plan and informing me of what he wanted in mine. but it was a prayer ending in amen and a kiss. I wondered why we always hugged when we prayed in bed or standing or sitting I wondered why those movies had folks on their knees facing the bed with their arms crossed when they pray. Anyways when we left the church we had to figure this out, and now he hugs me and tells me his agenda or what he'd like me to try if i could and kisses me before he goes. Sometimes its hidden in a prayer, but except now he crosses himself ( like when he was a kid he was raised Catholic before he took me to the temple politely three plus decades ago) and when or if he crosses himself, i do too ( to be polite if nothing else.- first its respectful and its significant when you're with someone who signs at least part of the time. The y sign which has a repeat or a response as a 'shared' 'unity' indicator. like for him, the end of a prayer. for me, its all the hug. all about the hug & feeling communicated with as he faces me and talks.)

its hard when someone who is hearing impaired right now, turns away or walks away because they indicates they do not allow you to reply. So even though its hard, please face the hearing spouse to allow them to know you are willing, as the hearing impaired family member, to talk until they wanted, the conversation to finish. i hear how hard it is for you when they walk away, but if you did speak they could hear. So if you turn away, they absolutely are cut off and there is not a way for them to speak back to you. its like a loop. how to do it in the least suffering- how do you find that/ i would like to help. Based on almost four decades with a severely hearing impaired spouse;

Can't call a need or a don't forget about picking up milk or the dog from the groomer at 10 etc. And you can't yell across the house anymore- its ineffective but things need to be shared sometimes at the last minute. I need more blood pressure medicine by 5 I am late for work, for instance. (can't text and drive they'll fine you, can't text during some work shifts, can't talk except to the work colleagues- limited gets frustrating. Get some white boards or shower wall boards up.
There are white boards/ its shower board on a kitchen door; hall way; shared private space with markers on wall for instant communication or shared information in the passing.

its hard to speech read or guess what someones talking about out of the blue- setting a context, setting a topic somehow- when the idea you want to discuss is out of place or time or not in the routine but referring to something different- I use digital photos about the place or event or garden or camp site or family member 1000 miles away- not the words out loud to start that conversation, when it is 'out of sync or unexpected'- its not about waffles during breakfast.
Shared photographs & sketches not just all words share shared events times And celebrate trips picnics garden success- it does not have to be a whole sentence. I use my phone digital camera to text or hand and share the photo and it begins a reminicence starts a conversation without a sentence out loud. it could be a hug or holding the dog leash handing the leash to him get out the phone and share the photo and it begins a conversation, or suggests doing it again sometime. Then the conversation starts - based on the photo.

WE use homesign some few public signs many slang or home signs it immediately shares a need, want, or event for the other to respond to. not a sentence- an individual sign only- one gesture and then word conversation because we are a hearing and English with speech reading hearing impaired marriage. my hearing impaired partner refuses ASL as primary but will utilize and responds to thankyou drink hello cheers claps i love you and many more. These are responses or topic setters for us.

I have noticed;

*Face each other directly or at right angles on table so you can see when someone talks.
-Can't hear when chew but can talk while chewing-
-need to see the face of the speaker _arrange furniture so face one another in chairs - not the the tv. Can't speech read can't tell someones talking to you when they are facing away or both facing a wall or entertainment center. At least make a L if not 2 couches facing each other. so you know they started talking.

need TV or netflicks music or sports off when you talk so you can hear. need family to watch their show and not small talk or attempt discussions when the show is on. (confusing and frustrating.)

Need pets to be quiet or time out ( kennel beside house if needed during budget talks- no yappers jumping poodles big shepherd barks distract you with your hearing aide. YOU come first not the cat yowling. The kitchen range fan can't be on when you are talking to each other, maybe not the water in the sink either. no more talking doing dishes or until the bath water is full or spraying off the car or the sidewalk with a power hose- those make noises that interfere.) you come first- communication comes first. Chores have to be done sequentially. No you can't talk on the patio while you kid mows the lawn- you have to re sequence when these things get done. They cannot be in communication time. Some times are communication times, others are committed to noisy tasks we cannot talk during. WE can use a sign to indicate we need or want to talk during noisy tasks. We cannot negotiate or direct difference things about the noisy task during the noise. yard work, power tools, impossible noise these are silent individual jobs not shared during the job talk time jobs. Even the sewing machine - the regular one doesn't interfere but the light industrial singer upholstery machine interferes with communication- you have to plan times to talk without machines being run, you cannot talk during tv or loud sounds off computer games, or sit while running sewing machine also talking when the sound competes and confuses the hearing aide completely.

And also it is unfortunate but seems rude, to turn toward a machine working when your parnter is speech reading carefully looking at you so i don't make communication times during either myself or my husband using loud sounds machines, chores.

I don't like being surprised I don't know about you, but you can startle someone who doesn't see you coming and they can't hear you- so when you can't hear well you and your partner need an approach thing. A I am here. I am back now. HEre I am- if its a gesture, or putting down a coat, or pulling out the back of the dining room chair- something fairly distant, not right on your hugging you like a ghost surprise. That gets old I think its rude. Lights on. Turn light brighter to wake up- don't touch a person's face when they're stone deaf without an aide on when they're asleep and don't expect you to be home. lights wake, abruptly but when they get turned up you know someone's here back, not just shock silent touch. Talk first- sign light is needed.

a routine. A shared expected routine of when you hug, when you get sexy, how (helps to have negotiated times separate from routine. ) Being told what to do is being critisized to some it is easier to know when you're gonna eat. Who makes the coffee. Whos buying it. make a routine. it'll get easier.

Change the routine you had when you both could hear to involve chairs facing each other- a quiet chair in the corner of the living room that faces no where ( so either one can be alone on a table or laptop or read or sleep or anything.) So when someone goes there they want to be alone. not a whole room.

maybe if either of you is infirm, get a call device button for emergency medical help- because you can't hear him fall, or call for help. and he might have blue tooth on music ear buds and not hear you it goes both ways- it could.

lists of what you want, what he wants, what you did purchase off the list, what he did purchase off the list- so you don't both come home with a quart of half and half and it stacks up in the refrigerator or fifty pounds of coffee. Be transparent maybe. Write payments in an open book- just a blank book- with a type of account or account for each page. So you can see what he's done, so he can see what you're doing without talking about every single bill every single time. or getting left out.

can't talk while you're driving side by side anymore - depends on the tires and engine type for road noise, speed and road conditions. Easier to hear in a white out, impossible in a wind storm. So places you talked might change.

We've gone through decades of different technologies for hearing assist. Digital starkey aide connected to iphone is great .

do you need glasses- get unscratched lenses. make it easier. I am too tire to read the text in movies I don't know how he does it- as the initial hearing partner ( years bring hearing loss to us all) I used to put in foam ear plugs at times when action movies were too loud on TV for me, before the digital hearing device.

I have listed as many encounter helps as I could off the top of my head/ I journal at times, and I list, at times- but with intent to share so my partner can just - skim the list, know what's going on, or getting tried, or got done, or errands or appliances expense incurred or need help with, instead of an out of the blue conversation topic before we've eaten, everyone's tired and hungry. I notice he'd point at the topic he was going to address, put it down, and then start to plan out loud to fix it particularly if it was a machine. and keep eating.

But the problem solving or getting things done happens more in transparent open obvious way. visual. list. handed it . not stuck on a wall thing.

When the kid had a tumor, it was a binder, open, full of appointments, labs, co pay receipt insurance mail- NOT an outloud conversation.

with a great hearing aide my spouse can pay bills with a machine talking, but humans speak rapidly or slur or blur or nuance in accent- my spouse does great with on line bill pay. acknowledge changes don't negotiate out loud for a something big I'd use lawyer to read legals after spoken negotiations before signing something again too. Talk is too confusing when someone wants a profit anyways this just makes it harder. Get it in writing or be proactive find a service on line or from your regular provider and resarch and order it instead of doing financial negotiations with a new hearing aide if you were the primary financial advisor and negotiator before your hearing loss.

deaf is not dumb. it is so hurtful when people act or speak such. So showing respect to your deaf or hearing impaired partner in a mixed marriage is so important to the relationship. I like the yoga qi gong bow 'god in me in you' gesture. I like something showing respect for the hearing impaired partner's efforts, a routine like bringing them their peanut m and ms or coffee every evening ( they bring me coffee every morning so its more than fair.) But I think making physical ritual of respectful gesture routine is a big deal when someone can't hear a one syllable 'hi' - they may not even note you were saying anything as you were walking in the room- so the 'hi' is lost, its one sound on a sea of noise. a gesture, a respectful kind gesture that doesn't startle - grab them, hit touch unexpectedly can no longer be a walk up and kiss someone who didn't know you were there. They didn't give their consent they didn't know or hear you in the room yet even. So a respectful gesture entering the space, you share, which, when they are alone in silence in it, is , their space. When it becomes shared- our space- and they don't even hear or know you have entered- you need a respectful gesture. not just talking your shoes off and throwing them along the wall.

These are changes. Things take time. you matter. It will get better. you can do this. <3 painting

and btw I think an audiologist or speech pathologist or county office of education hearing impaired specialist might be better for life routine, communication management strategies, communication skills training if only from an american with disabilities kid coaching training iep intervention strategies manual, than a typical hearing m f c c.
its about skill. skill routine life management not 'an issue' happening and an m f c c sees things differently than a deaf educator. where an m f c c is trained to see pathology or look for issues, a deaf educator facilitates skills, assess skills which need training, remediates lower skills lifts elevates and assists as folks improve their lives and learn to communicate= don't confuse the two types of assistance. an m f c c is more likely to say the issue is you or if you or he is frustrated with him or your hearing then do an identified victim counseling theme developing a divorce initation and separation because they meet frustration and ah! eureka! an issue!
where the frustration is deaf/hearing impaired hearing communication based and there are books, blogs, deaf educators at county offices to facilitate skills you need for this transition. i cant even say how offensive it is when someone makes someone's deafness into dumbness when they misunderstand what was said and label or blame, or makes someone's hearing impairment into a pathology particularly psychologically rather then understanding even in a conversation, even with them, they things unheard, phrases unheard, words guessed at- do not mean a conclusion based on that 'ignoring' or miscue from their psychology mfcc training books and guides. So much room for extreme labeling and blaming for the hearing impaired partner primarily. if you say you are frustrated and are louder than you can now hear ( can't hear you own voice volumne) others can blame and name call, anger problem, hysteria- and it was your hearing aide volumn and skill training about voice.
Get a educator deaf training facilitator. SEriously? Seriously. Thirty years together- you are WORTH it

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