Laura, I don't know if you can see the posts above, but the Hearing Loss Association of America has been very helpful for me. I am fortunate enough to live near the Chester County, Pa chapter, which is a remarkably energetic group. They are having a monthly meeting on Thursday March 14 at 3:00 on Zoom. Please try to attend or at least get on their mailing list. You can also connect directly with me - leedastur5@gmail.com. I understand fully the unbearable isolation and frustration that you describe. You are very smart to reach out and to ask for help. The health of your entire family is at stake. I do hope to hear directly from you.

Hello Laura, as a profoundly hearing-impaired spouse and parent, I want to offer my perspective, which I truly hope will help, but don't know in which way.
At age 25 I was diagnosed with otosclerosis in both ears and, as it was a deteriorating condition, I knew I would need hearing aids at some point. A few years later, noticing how hard it was for my husband and children to keep having to repeat themselves and deal with MY condition, I knew I needed to step-up and start wearing hearing aids because I loved them and wanted to be the solution to what had become a constant challenge and nuisance... For them! For my colleagues at work. For my students! For the shop keepers from whom I bought. I didn't want to Be The Problem. I could so easily choose to be the Solution!
Yes, it's annoying and expensive, with no end in sight.
I hope that somehow your spouse can become open to this perspective, without feeling victimized. Maybe it's just a change in attitude. I truly wish you all the best. Keep reaching out!

I'm pleased to see that this discussion has been reinitiated. It helps to share experiences, especially those that let us know we are not alone with the frustrations that hearing loss creates. Both 'sides' have legitimate concerns because hearing loss affects everyone with whom the person who has it associates with.

This was the main reason The Hearing Loss Assn. of America (HLAA) was founded. A small group of people in the Washington D.C. area with adult-onset hearing loss, got together in 1979 to start what they called 'Self Help for Hard of Hearing People (SHHH) They recognized the need for mutual support. They were amazed to find out there were other people like them. Very little information about this invisible disability was available then. Because they went public with their goal to get people to talk about hearing loss, the media picked up on it and the word spread. I was one of the lucky ones who got wind of this a few years later and have been involved ever since.

My hearing loss was diagnosed when I was in college. I was told I'd be deaf by age 40. I was also told nothing could be done to help me. Hearing aids were pretty primitive then and were not recommended. A dozen years later I was struggling on the job, socially, as a spouse, as a parent and as a very frustrated human being. I tried hearing aids. They helped a little, but I was embarrassed to talk about it. That kept me isolated more than not.

I am so grateful I learned about SHHH. With support from my husband, I went 'public' with my hearing loss and wish to meet other people like me. If I saw someone with hearing aids on, mostly men because they had short hair, I would tell them about SHHH. A small group came together and formed a chapter. That chapter is now HLAA Fox Valley Chapter (Appleton WI) and is celebrating its 40th year since its founding by organizing an educational state level conference this April.

We have learned so much from each other. We've become friends. We've found says to involve our hearing family members. We have learned about technology that goes way beyond hearing aids and have become advocates for our right to participate. Most importantly, we have found ways to remain socially and intellectually involved in other groups. And we have become educators and advocates. We have also watched the development of cochlear implants which for many of us are modern day medical miracles!

If there is an HLAA chapter in your area I encourage you to check it out. There is information on the organization's national website: http://www.hearingloss.org If there is no chapter in your area, consider starting one. By bringing a few people with hearing loss together you will do something very special. Many HLAA chapters are now using hybrid technology to meet. That means that in person meetings are also zoomed so people can attend virtually. There are no geographical barriers. Meetings generally include educational programs. They use hearing assistive technology like hearing loops, FM systems, IR systems and live captioning. They have rules such as 'only one person speaks at a time' that make hearing much easier. Together, the people involved find things that work. AND their significant others learn right along with them.

The conference in Wisconsin is open to anyone who wishes to come learn. Registration is open until seating capacity is reached. It is the weekend of April 26-27. Information at: http://www.hlaawi.org or from hlaafoxvalley@gmail.com

There is also information about the HLAA national convention at http://www.hearingloss.org the national website. The 2024 national convention is in Phoenix AZ in June.

It's important to know there are solutions. There are millions of Americans out there who need support they are not getting due to stigmas and misinformation. By coming together to talk about 'it', we help make hearing loss an issue of concern rather than something to hide.