I have been lurking on this forum because I am dealing with the aftermath of a caregiving situation gone horribly wrong.
A year ago, I started working for “Bertha,” an acquaintance in her nineties. She hired me to help her every Wednesday, and I said yes because my flexible schedule allows for that.
Bertha is nearly deaf, so she makes everybody shout at her. She shouts too, even though it isn’t necessary. The few times I asked her to lower her voice, she said, “I DON’T KNOW HOW TO WHISPER!” So, I let the subject drop because I didn’t want to be difficult. Instead, I learned to tolerate the noise, even if it meant going home with laryngitis and a pounding headache after every visit.
Little did I know I was giving my ears cumulative damage over the course of eleven months.
Sometimes, I wanted to quit because the mutual shouting was so exhausting, but I thought it would be selfish of me, considering how depressed and frail Bertha was. During my weekly visits, she went out of her way to remind me that most of her friends and family were dead, and the ones who were still alive were elderly and disabled, or they had full-time jobs or grandchildren to care for.
Obviously, she latched on to me because I was an able-bodied person who ran a small business from home, and I had no kids. I also lived much closer to her than any of her surviving family members.
Bertha was afraid of abandonment, so at every single visit, she would say something heart-wrenching in the hopes that I would keeping coming back:
"I NEED YOU SO BAD! ALL MY KIDS ARE DEAD!”
"PLEASE DON’T QUIT ON ME! I’VE GOT NOBODY."
"I WANT YOU! I’M NOT HIRING A COMPLETE STRANGER, BECAUSE A COMPLETE STRANGER WILL ROB ME BLIND!"
Bertha had hundreds of storage boxes in her house. They were stacked waist-high in every room with almost no space for anybody to walk. In September, she asked me to spend an afternoon helping her open some of those boxes and examine the contents. That day, I developed an excruciating pain in my right ear and a loud ringing in my left ear while she was yelling orders at me. Keep in mind that we were standing less than twelve inches apart because we were hemmed in by the boxes, so her mouth was really close to my ear the entire time.
I went home in so much pain that I decided to quit. I feel guilty for abandoning her, but now I’m more worried about me. It’s been two months, and my left ear still has tinnitus (that awful ringing sound), and my right ear has noxacusis, which means it’s extremely sensitive to noise even noises that aren’t very loud. To give you an idea of what that’s like, imagine a life of excruciating pain and chronic swelling caused by ordinary sounds, like the clink of a spoon against a dish, the crunch of autumn leaves, or even the sound of running water hitting the bottom of the kitchen sink. Music is torture, even when it's soft.
Tinnitus and noxacusis light up the parts of the brain that affect mood and memory, so I also have suicidal thoughts and brain fog. I’m too exhausted, too forgetful, and in too much pain to accomplish anything, so I’ve had to put my small business on hold and cancel all my plans for autumn. My life now revolves around doctor’s appointments, but I have very little hope of making a full recovery, for tinnitus is incurable and noxacusis is notoriously difficult to treat. I can no longer understand my husband when he speaks softly, so I may also need a hearing aid.
If you are in a noisy caregiving situation, please consider wearing ear protection. By the time you notice hearing damage, it’s too late. Also consider whether you’re the right person for the job. I have a soft, thin voice, and Bertha had an especially hard time hearing me. A man with a deep, loud baritone voice would have been ideal.
I wish I had paid more attention to my own physical discomfort while working for Bertha. I was so concerned about her health that I never anticipated that she would destroy mine.
I pray that you find a solution soon for your hearing.
Caregiving is a long, difficult road, and we're happy you have found the support of others here on this site. However, there are limits to what untrained members of the forum can provide for you.
If you are experiencing thoughts of suicide, please reach out to experts at the 24/7 Suicide and Crisis Lifeline by dialing 988.
I'm sure other caregivers will be along shortly to provide more words of encouragement and advice. Please take care of yourself!
ADVERTISEMENT
I have gone from one doctor to the next, and nobody has been able to help me. Even the audiology department hasn't been helpful. I've been told that nobody over there specializes in the treatment of noxacusis and that I'd have to go outside the network for help. I've looked into what my options are, and they aren't promising. I may have to spend thousands of dollars out of pocket but with no guarantee of good results. I am so exhausted and miserable now that I don't think I can put up with any more long waits and false hope. If it's my destiny to be sick for the rest of my life, I may as well die sooner, not later.
Meanwhile, my bank account is dwindling almost as quickly as my will to carry on. I have been unable to work since September because my memory and attention span have been destroyed. I cry myself to sleep every night because I am in so much pain and because the tinnitus inside my head is so loud. My husband is so loving and supportive, and although I'm grateful, I feel like I'm becoming a burden to him for how little I accomplish now. I have zero energy.
What hurts the most is that Bertha and her granddaughter don't care at all. They treated me like I'm completely disposable. They both know about my hearing damage, and neither of them had the decency to express their sympathy and wish me a speedy recovery. I deserve better than that. I worked hard for Bertha. I put up with her unreasonable requests, and I listened to her petty rants about trivial things. Most importantly, I never stole from her. Bertha always insisted that I keep coming back to see her because she knew I was trustworthy and because she believed that strangers would rob her blind.
When I still worked for Bertha, she used to shout out these long monologues about dead relatives and dead friends and all the hired help who upset her by going on vacation, calling in sick, or quitting. She also had a long list of shop clerks that she doesn't like because they don't smile broadly at her. Everything is a huge affront to her ego, including service workers who perform their jobs with a neutral facial expression. If you don't smile at her, she will go out of her way to avoid you the next time she goes back to that store.
I don't know who Bertha replaced me with, but I guarantee that person is now hearing the long list of people who quit on her or died on her. It's the same list as before, except my name is on it now, and Bertha is probably telling the story as if I selfishly abandoned her.
If she could see me now, she would be insulted because I'm not smiling at the thought of her and her granddaughter. But why should I smile? They betrayed me.
Some well-intentioned people have told me I'm a good person because of how hard I worked and how kind I was, but that doesn't make me feel better. There's a word for people who are kindhearted and devoted, but at the expense of their own best interests. That word is "chump."
I am so angry and miserable that I want to scream, but I can't do it because my ears are so sensitive to noise.
I haven't decided how I will kill myself, but it won't be with a gun because I don't want my last moments on earth to be filled with more noise and more pain in my ears. I've had enough of that. I just want to go quietly.
Please don't take this post down. Leave it up so that it serves as a warning to caregivers interacting with someone hard of hearing. You must train your client or loved one not to shout at you, even if they say they don't know how to modulate their voice. A single shout aimed at your head from a short distance away is all it takes for you to suffer permanent hearing dysfunction and the accompanying neurological problems. Don't risk it.
Saying "what?" over and over is what makes him look old.
He'll never willingly put those things back in his ears. I think he's been deaf so long that to hear all the ambient sounds that we sort of sift through make him a little nuts.
If I said I screamed, I was exaggerating. I talk VERY loudly and VERY distinctly.
Even the loud talking has caused damage to my vocal cords.
All I can do it warn my kids this is a very possible genetic thing for them and to please not put their families through the hassle of adapting to a problem that can be remedied.
You are wise not to watch TV in the same room as your husband. Anything you can do to protect your hearing and peace of mind is worth doing.
Like Midkid, I have a husband who is extremely hard of hearing from a childhood accident. The ear involved, he can no longer hear out of. His other ear he only hears 20 or 30% and that is with a hearing aid. I too have to stand in front of him to hear me because he reads lips to a point. I do tend to talk loud because of him but I don't scream.
I could never allow the screaming in the first place because I am very sensitive to loud sounds. My BIL had the sound on his TV louder than I keep mine because of his hearing. Much too loud for me. My DH and I do not watch TV in the same room.
I understand about Bertha. I helped a friends mother (friend was an amputee and suffered from juvenile diabetes which was causing her health problems). It went beyond helping Mom once or twice a month to helping the friend almost weekly to then helping her daughter too. In one month, 3 days out of 5 we were running someone somewhere. How did I get out of it...I started babysitting my grandson. I gave everyone a heads up to find help. Watching my grandson went right into caring for my Mom. When I saw Mrs S she would ask me to drop in. I just couldn't. By this time my friend and her husband had passed. Her granddaughters are useless. I just knew she would come to depend on me. Thank God a younger woman came into her life and became her friend. I so hoped this friend would not take advantage because Mrs S had money. Then I thought, so what. If the woman made Mrs S happy, thats what mattered. Her grands did not deserve her money anyway.
I so hope over time your hearing problems can correct themselves.
Everything hurts right now. There are certain floorboards in my apartment that I try not to step on anymore because they squeak. I can't even be in the same room with my husband when he's typing on this laptop because it sounds like actual gunfire. Some days, I can't even be too close to the refrigerator when it opens or closes because the noise hurts my ear.
My HMO took a long time to get me into the ENT department, and now that I'm in, I'm supposed to get an MRI so they can see what kind of damage I have. I don't know what I dread more-- the loudness of the MRI machine, or the possibly bad news I might get after the radiologist interprets the results.
Thanks for telling me about your experience with tinnitus. It's heartening to know that tinnitus may become less bothersome, given enough time.
While wearing my earmuffs, I can't tell how loud my own voice is, so I certainly understand why Bertha was always yelling at people without intending to. Your mom was a darling to speak to you in a whisper. She may have had an above-average sense of bodily awareness too.
I'm sorry about your voice. Take care of your ears as much as you can. Nobody can predict whether an episode of tinnitus will last an hour, a day, or a lifetime, so it's good to be careful.
One's brain will eventually get use to the noise inside the ear. In fact, I have to stop and listen to even pay attention to the sounds. Once in awhile I will get what sounds like a hammer on a tin plate. Right now there is a high pitch wine. These strange sounds come and go.
I, too, don't like very loud sounds. Fireworks are over the top for me. If my sig-other uses a certain dish that has a pattern in the middle of the dish, when eating the scraping of the fork on the dish is so uncomfortable.
I also know what you mean about needing to shout at someone hoping they can hear. My own Mom had lost her hearing even hearing aids were no longer any help. Shouting is not my thing, I feel so uncomfortable doing it, especially out in public. At least my Mom spoke in a whisper.
Are you able to use a noise ear muffler in your right ear. These are similar to what
landscapers wear when using mowing machines.
It's a battle I've fought and lost completely. I believe that by the time he is 75 he will be stone deaf. The audiologist tried to work with him to adjust to the aids, but he was so offended by the diagnosis that he was pretty deaf he wouldn't work at 're-learning' how to listen. It's a SKILL. He talks over people, doesn't hear whole sentences and just loudly proclaims his every thought loudly and often, very rudely.
My throat has become permanently inflamed from having to speak so loudly to him. If I use my normal tone of voice, he cannot hear me.
What you have going on sounds awful. I am going to be more aware of being too close to him when he talks, sometimes I do get a ringing in my ears and just chalked it up to being in the moment when he was 'yelling'.
Funny, (not funny) how his mother has the same thing going on and it drives him insane to spend time with her, b/c he had to REALLY yell. He cannot see that same dynamic in his own life.
Watching TV with him is almost unbearable. He wear bluetooth headphones and has the CC on the TV and STILL asks me 'what did they say? Rewind to that last scene".
My kids say that my voice has grown louder and raspier over time. I hate that this ruined my singing voice--my one and only 'talent'.
Her entire worldview is defined by bereavement and abandonment. I've always known it, and I shouldn't have let myself get enmeshed.
There is a supplement called Lipo-flavonoid Plus. It's mostly B and C vitamins but with a concentrated dose of the lipo-flavonoid found in lemon peels. Some people say it helps with tinnitus, so I've been taking it for the past two weeks. I may eventually get off this supplement and switch to fresh citrus fruit because whole foods are nearly always better than pills.
Tinnitus is so peculiar. You're not the first person who's told me that it started after a medication was given. I've even heard of people getting tinnitus from having dental work done (because the delicate nerves around the jaws are so easily disturbed, causing unexpected side effects that have nothing to do with the teeth or gums). I do hope they find a cure someday that works for everyone, no matter what the cause was.
I've been spending a lot of time searching for alternative health treatments. I will definitely search for Dr. Berg's video and give it a try.
For stress reduction, acupuncture has helped me. I'm also teaching myself acupressure so I can get some stress relief benefits at home.
It's a method that a doctor discovered years ago and it's a 30 second exercise that a person does every day and apparently, it's supposed to lessen it or, as he said, possible cure it. I know it sounds hard to believe, but I'll be trying it ....and I wanted to pass it along to you....if you google Dr Eric Berg and how to treat /cure tinnitus...you'll locate the youtube video.
I hope it can somehow provide some healing and solace for you. It's good to take this time to do take care of yourself and I hope this will be behind you soon ~
Thats why they say no good deed goes unpunished and in this screwed up universe a person doing something decent usually winds up getting royally screwed over.
As you found out with the damage that exposure to this woman did to your hearing.
The person who invents a cure for tinnitus should be given a trillion dollars in my opinion. It would be a miracle for everyone who suffers from this debilitating and terrible condition.
My husband got tinnitus from an antibiotic. Ironically the one thing he does that lessens it is to eat a fresh orange daily. The white part of the orange for some reason makes the ear ringing a little less then when he doesn't eat one.
I briefly tried to "communicate less" with Bertha by limiting my answers to a simple "yes" or "no," but she pouted like I was giving her the silent treatment. Also, she finds silence to be socially awkward, so she never stops talking. She's an extrovert who doesn't like to read and doesn't know how to surf the Web, so she requires constant companionship. I felt sorry for her because she's obviously lonely, and being nearly deaf makes it aggravating for people to be friends with her.
Bertha's most cutting insult was to call somebody "nice but not friendly." I eventually figured out what she meant by that. "Nice but not friendly" means a person who will be polite to her but will not socialize with her.
She refuses to sell her house and move into assisted living, and that's too bad because she would probably enjoy making new friends in a group setting.
l feel bad for her granddaughter, who is probably burdened with even more caregiving pressure with every passing day.
Almost everyone knows that you can get lung cancer if you smoke, but hardly anybody knows how dangerous it is to put up with loud people. This is why I wanted to warn people on this forum-- so that it doesn't happen to anybody else.
I cry myself to sleep almost every night, afraid that I'll have chronic pain and hearing loss for the rest of my life, due to my failure to protect myself from Bertha. Week after week, she said, "EVERYBODY DIED ON ME" and "I'VE GOT NOBODY," and it got to the point where I lost sight of myself because she ate up all my attention.
I will never let anybody do that to me again. The "I'VE GOT NOBODY" isn't even true. She has a devoted granddaughter who makes overnight visits about two times a month. This granddaughter lives three hours away, holds down a full-time job, and has a family of her own. It's just that Bertha is lonely and she resents the fact that the granddaughter "doesn't do more."
Sorry your hearing is so damaged. Hopefully it will heal.
I hope you get better soon.