Dealing with a spouse who has profound hearing loss.

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.

I can identify with that. My husband has resigned himself to a life of isolation. It has been and remains a huge issue for me. We are retired now, kids out of the house. The silence is deadly. I have really been struggling to built a life of my own when one half of the team is dysfunctional.

Julie, I can't tell you how much I appreciate your work in helping to launch HLAA. There is SUCH a pressing need for the medical community to recognize the very serious impact that hearing loss has on people's daily lives. So far it seems to be mostly about technologies for remediation, and that's fine. But the social/emotional component is scarcely considered. I found the same thing when my husband had a stroke (this has been a long haul.) The doctors wrote prescriptions for OT and PT and speech therapy - though not nearly enough. But when I asked about a psychologist who was trained in managing such changes, they looked blankly at me. To my knowledge, there is still virtually nothing out there to address that. The demands from grassroots organizations will probably be essential for getting such services going.
Thank you.

May I add my three cheers to this discussion?
You are SO correct, the psychological impact seems to be the last area considered, yet is the area where life gets lived!
I know this from my own struggles with hearing loss and my other myriad of health issues. The resistance to anything 'psychological' is a deeply ingrained prejudice in our society.
I worked in this field. I can say that the tide is changing but not swiftly enough.
Well done you! All the best as you seek out this excellent area of support!

@leeda5 & @thisoldewe Yes! The psychosocial aspect of hearing loss is huge and hugely neglected. Anyone who understands psychology knows that isolation causes depression and loneliness. Why training in the field of audiology doesn't include training in counseling is a mystery. HLAA folks have been asking for this for decades. The state conference in Wisconsin on the weekend of April 26 & 27 will include presentations on mental health as it relates to hearing loss. It's an open conference so come on up to or over to Wisconsin! I tried to attach a document below but it looks goofy, so we'll see what happens on uploading. Nevertheless, information is available at http://www.hlaawi.org How can we get those spouses who have become recluses to build their lives back?

Thanks for the info Julie and yes, I so agree that the psychological aspects are so often ignored... the results felt by the person and the family for years to come.
Would love to come to this conference - sounds wonderful! But I must send my best wishes instead.
For the reclusive spouse: Screening for depression would be the first step: depression would be a reasonable response to such a life altering diagnosis.
Then, if all clear, the dependency between the deaf partner and the hearing partner could creatively addressed. Often, the deaf partner can only be reclusive because of the benefit of having a hearing partner to fill in life gaps.
So the hearing partner could plan a 'vacation' or a 'family emergency,' which removes the hearing partner from the home for a while -- 3-4 weeks? or maybe just a weekend would be helpful. This would help the deaf partner to address what they need, and discover what their new life is, without the other partner [ of course leaving the right contacts for the deaf community input/care, etc. in place, as necessary].
However, such Tough Love tactics must be used with care, depending on the situation. This is not a cure-all.
The adjustments are great for all and each of the family members - some more successful than others in making the transition. If the deaf person initially refuses to go to therapy, then the other members of the family should go. There is much to be learned and understood by all the family in this brave new world!
All the best.

Julie and Christine, very good suggestions. I particularly like the line, "So the hearing partner could plan a 'vacation' or a 'family emergency,' which removes the hearing partner from the home for a while ---maybe just a weekend would be helpful." I feel SUCH a need to have time to myself. I just read the book "Co-Dependence", which is the bible for AA. But it felt so familiar to me. His needs have really taken over my life. I am really fighting to re-establish my identity.

to thisoldewe:

regarding the line "if the deaf person initially refuses to go to therapy,
then the other members of the family should go." He doesn't see the need
to go. He has given up on all expectations. I have spent years trying to
reengage him with life and finally am reluctantly coming to the conclusion
that I have to accept this as his decision and move on. 😟

Back in the years when I was really struggling with my hearing loss I had several health issues related to stress. I was in my late 30s. (That was 40 years ago!.) My physician advised me to register for a new stress management class they were offering at a local hospital. I did. The first class suggested I make myself comfortable, close my eyes, and listen to a recording about relaxation. I couldn't understand a word of that recording. The healthcare professionals had no clue. I did not return to that class. The experience encouraged me to do my own research on managing stress. I learned about Benson's Breathing Exercises, and started practicing that procedure. (My dad had a book on that from his time in the service during WWII. I found it and read it.) That was very helpful to me. A few years later I discovered SHHH/HLAA.

My psychosocial issues didn't go away in a flash, but they dissipated considerably as I learned I wasn't alone and that it was OK to talk about it. I am blessed with a terrific spouse and a wonderful daughter who have made many sacrifices to support me over all those years.

It's sad to hear about people who are not that lucky. And yet, I know several of them through HLAA involvement. A lot of divorces out there due to this poorly understood issue. During the years I was on the national HLAA Board of Trustees, my family accompanied me to some of the national conventions. There they had a chance to meet others who were family members. That kind of peer support is priceless for them too.

The 2014 national HLAA convention is in Phoenix AZ in June. Prime topic for the research symposium is "The Emotional Side of Hearing Loss". I suspect it t will be life changing for many who attend.

Phoenix in June. Hm.