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Thanks for the support and suggestions Mason, debbie and DeafMom. CART may be what I need to use. I don't know anything about it. Do they have to supply the computer?

 One other concern is that when I can't hear the speaker will often turn to whoever I am with or whoever else is in the room and talk to them about me instead of to/with me. My family has all passed away and I am very alone now. I have no one to be my personal advocate and help me with communicating. I DO NOT want the docs or nurses talking to others instead of me with information that I NEED to hear and information that I need to communicate with them about. I do not lip read or see well enough to get by that way yet. I am learning. An ASL interpreter won't help either since I don't know enough sign language yet.

What about a sign in my room that reads "If its not important enough to communicate to me, please keep it to yourself."  Or, "Communicate with patient only"

Of course, I can't do this, but its a thought.  

 

 

hi again sunny, well i can totally understand where you are coming from about wanting everything that has anything to do with you to go through you instead of someone else, it is your life and you have the right to make desicions ect..  it must make you feel like someone else has control of you

Sunny399:

Of course, I can't do this, but its a thought.  

\why can't you?  i think maybe you can talk to all involved drs, nurses, anyone in your life and somehow through a letter or a friend make it known how important it is for you to be the person that things get run by . it's your life and you have every right to do what you have to do to get heard and your wishes made to be repected and carried out. good luck honey, keep us posted

Sunny we have to advocate for ourselves.  Nobody else is going to do it for it - even if we do have family members around, they could not really understand what it is we need unless we tell them.  I do not sign, nor lipread.  I have been trying to help my father with Alzheimers enter the nursing home.  It is important information I need to convey and understand from drs & staff about my father.  So I know a little about how you are feeling, and have anxiety about if it was myself in my father's position, how would I manage.

Anyway, you must tell your doctor and your surgeon ahead of time what your concerns are.  Include the anesthesiologist in the conversation too.  The hospital is required to supply you with whatever communication equipment you need.  BUT YOU HAVE TO ASK FOR IT!   It is their responsibility by law to do this.  They must hire the person with the equipment and training to communicate with you, but of course they need time to locate and schedule that to happen.  If you are in a smaller town, this may be more difficult to do.  So start now and tell them you want  CART (communication access realtime translation - also referred to as realtime captioning).  This works sorta like a court reporter and they type all the conversation in the room by everybody in a shorthand software program that then appears on the equipment for you to read.  The CART person shoud explain to everyone present that they need to talk one at a time & identify themselves so you will know who is saying what.

I see no problem with posting a sign in your room that says you are not able to hear and need everyone to talk to your face.  (I have a visor card in my card that says Driver is Hard of Hearing and goes on to explain if I am stopped by police or in an accident that I am not being uncooperative, but cannot hear and then it explains how to communicate with me etc.)  So this is a good idea you should follow through with and explain to all your nurses and other staff.  You must not be embarrassed or nervous about this.  Hospital staff have had other deaf people and if they have not, then it is time they learned!!!  You will be helping somebody else!

Mason:

I have a visor card in my card that says Driver is Hard of Hearing and goes on to explain if I am stopped by police or in an accident that I am not being uncooperative, but cannot hear and then it explains how to communicate with me etc.

 

This is a good idea; I am thinking of getting a doctor's letter that explains that I cannot maintain my balance on one foot and have nystagmus (related to my balance issues) for presenting at highway drunk checkpoints. These are common in California and because I have trouble communicating with the officers I tend to get hauled out and put through the "drunk tests" which I cannot pass even though I am stone cold sober and a Muslimah in hijab! So far I have simply hauled out all my medical appointment cards and things and have been let go; but I have real fears of winding up arrested someday because I can't pass the tests.

 

A major part of my social life used to be attending religious classes and sessions with friends; because of my hearing impairment I quit going because I became incredibly frustrated when I could no longer follow what was transpiring in the room because I can't filter background noise and my tinnitus makes it even harder.

Hello Sunny, I hope all is well with you! I hope this gets to you before your surgery.. but I just joined this site...

If you already had your surgery, I hope you got the service you needed. It sounds (no pun intedned!) that you need a CART provider. The hospital should have no difficulty in providing one for you. NO YOU DO NOT have to provide the computer, the CART provider does that. NOR DO YOU have to pay for it. All Drs and nurses should be talking to you directly ... not to the person next to you. If you can read lips, great, but do not wholly rely on that, no matter what skill at lip reading you think you have. (I consider myself an expert at it, yet I know I cannot wholly rely on my skill at lip reading for total communication).

Use the sign "Communicate with patient only" ... Remember YOU CHOOSE the method by which all others must communicate with you, especially since it is your health and wellness at stake! DO NOT LET ANYONE TELL YOU OTHERWISE!  You must be wholly informed in all things related to your health and you get to choose how they must communciate with you. Insist on it! Do not back down. In addition, it is your private health information.

Please let us know how you are doing!! You are not alone!

Hi Mason, this is Great! Can I copy this to share with others? I know several people who may benefit from this! (I am on the board of directros of a non-profit agency who services the needs of the Deaf and Hard of Hearing community).

I can't say I experienced all of these stages; however, I grew up Hard of Hearing so it was a part of my life .. my entire life ... which may very well make all the difference versus someone who is late-deafened.

Thanks for posting this, I am sure someone can benefit from it!!!

Steve

Regarding the orignal subject of this thread, coping, by Mason, I know of the stages described, have experienced them all in various forms, and they are pretty well documented in literature about grief and illness, etc. Understanding this can be a great help.  What I would like to offer is the AA prayer, although I am not a member of AA.  It has helped me a great deal.  I do not think you need to "believe" in God to use this, as it works well as a meditation mantra too [slowly repeated words in a quiet, undisturbed place with your eyes closed, over and over (for a period of 1-3 minutes to hours, as necessary and helpful)]:

 

    "Grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference."

 

Also, message to Sunny: whatever stage you are now in regarding your cancer surgery/treatment, it is obvious that many here care, as do I, and I hope you will let us know how you are doing.

Warmest regards, Bonnie 

I have rarely read anything so eloquent.  Exactly what i needed to hear, in a manner of speaking, right now.  My hearing started when i was a young woman at a rock concert.  Both eardrums punctured by a "dead" speaker.  It got progressively worse, but hearing aids were terrible in the 80's 90's.  Now they are improved, BUT nothing like they should be.  I still can't believe that most health insurance plans won't pay for them.

 

My hearing has gotten much worse in the last few months.  I spend a lot of time saying, "could you please slow down, can you please turn around and look at me, can you. please. talk.a little.slower." especially at work.  Going to meetings (and i do that a lot both in my business and in my "social" life.) has been a horrible experience.  I lip-read a lot, and have for more years than I realized.  However, that does not help on a teleconference, or in a huge group meeting. I will save your post on my PC because I have never seen it so eloquently expressed anywhere.

 I am working on writing a mystery story with a deaf protagonist. the only book I have read that came near to expressing my feelings, was Marie Matlins Deaf Child Crossing.  Which was wonderful.

 

I am so glad I have found this website.  I needed so badly to write to others having my problem. Hearing people have no clue what it is like. they look at me as if i were stupid, or crazy, especially when I have to stare at them to read their lips.  Since I am a CPA, I know I am not stupid.  However, it doesn't help to have people deliberately put their hands over their mouth when they know I lip-read. (some people at work do this...then they laugh, thinking I can't hear that either).

 

I have missed hearing a lot of tones. I used to love almost all types of music. Lately however, classical music is impossible, too many tones missing.  I still love rock because I can feel the bass. And jazz is great because there is a lot of percussion and I can "hear" brass. My eldest daughter is very understanding about it, says she thinks she may be losing some of her hearing. My youngest daughter, however, gets furious with me. Bellows at me "Do you have your hearing aids turned on? Do you have batteries in them?" My present set of hearing aids are terrible, much worse than the Miracle Ears i used to have. The Miracle Ears had a wand that adjusted the hearing for different types of sound. The ones I have now dont. Also, since I had a concussion a few weeks ago, my tinnitus has returned full blast. How terrible to hear very little except a high pitched hum! And I am NOT wearing my hearing aids right now. I am also coping with some vertigo, and that has definitely affected my life.

 

It may come to having to go out on Disability. So far, I have only been put on "probation" because my hearing has definitely affected my ability to work effectively.  Try being part of an audit team on site when your audit partner and the clients definitely think that Deaf People are stupid.

Again thank you for what you have written.  I will treasure your words for a long time.  Helen in El Paso