The frustration of conversing as a mute

Status
Not open for further replies.
I'm jumping in here a little off topic but I frequently encounter people who should be wearing hearing aids. My housemate had his hearing tested and it was bad, even at only 58. We discovered that COSTCO has good ones for $1,500 a pair. He is now hearing much better. My cousin couldn't afford them but got Bose "hearphones" and now has no trouble hearing.

Big Mark! Glad to see you're getting out and still have that wicked sense of humor.
 
Wow. Thanks to all for sharing your experiences, but sorry you have to put up with it. It seems to be difficult for some people to learn to be patient in a conversation, and others, well, they're just not very empathetic. I think being in a chair also contributes to their attitude. The first time I used wheel chair assistance in an airport, it took zero time for people to start treating me like I couldn't understand them, talking about me in front of me to my wife ("Can he do x or y?") and the like. I like Dee Dee's idea of whistling. The image of your son spinning around made me smile. :)
 
This was one of the hardest losses for my sister, Kay. She loved to tell stories. Be part of lively conversations. She definitely turned to writing once she lost her voice. Certain family and friends were the best at pulling up a stool right next to her and being very patient as she typed out her responses or asked questions. Sometimes the professionals visiting would do that 3rd person thing to her, and I would remind them that she would reply herself. They'd look at one of us instead of her. Kay referred to herself as the potted plant if she was being left out. She also had some good computer noises to interject - like loud pig type chewing noises if people were eating too loud. Her favorite thing of all was entertaining her grand kids with something on the computer. Not a lot of words needed then. We never tried the voice amplifier - that stage went pretty fast and she was busy mastering the eye gaze.
 
Kay referred to herself as the potted plant if she was being left out.
Wow! I can relate to that! I would love to figure out how to make a pig snort sound on the computer. Unfortunately I can’t whistle.
 
I have the problem with talking with the tobii too. My solution is to talk and make the conversations come back to me.

My other problem is that my wife will rattle off five questions at me, and my solution is to answer with yes, no, I don't know, yes, no and force her to recall what she asked me.

I have a friend who reads over my shoulder and tries to finish my sentences for me, which is a pet peeve of mine so I keep adding an "and" and take the sentence elsewhere so he's always wrong.
 
Oy, the questions! There are a number of categories of peeves in questions!
1. "Are you warm enough? Do you want a blanket?" Um.... How do I answer? If I say yes and no, they have no idea what I mean.
2. "Do you mind if I move your head rest?" I say no and they think I mean no don't move it when I mean no, I don't mind. This generates a whole conversation to get it straight.
3. "Do you want me to close the window?" No. "Keep it open?" Yes. Why do I have to answer twice? "Do you want me to take off your blanket? " No." Leave it on? " Yes .

of course, I couldn't sound more ungrateful when these questions all come from caregivers who are trying their best to improve my life, so I feel like a jerk for poking at them...
 
Communication issues were some of the most challenging. We had to resort to the alphabet "blue card" to spell things out when computer was not available. Kay learned to be an accomplished meditator and listener to survive I know. We made a game of who could figure out the right answer - especially for positioning in the wheelchair. The hardest times were when she was in pain and we didn't know what we needed to fix. Best to remain patient and calm. Not say, "I can't understand you!" in a loud frustrating voice. Memories come back and I continue to be amazed by my sister.
 
Thank you for starting this this thread, Karen. It helps me to try to be more understanding and take time to let those I know with ALS have time to communicate when they are unable to speak. I am guilty of pretending to understand and just saying "yes" or nodding when I really have no idea what the other person is trying to say. I will try a different approach going forward.
 
Firefighter’s comment is spot on, and something I am working on at the moment. I can tell from my PALS’ eyes or eyebrows that she’s typing, or starting to type, so I can tee someone up to listen. The next part relies on their patience. But when it’s just us, I sometimes ask a few questions and then wait for a combined answer. I must confess I sometimes do something else while the answer is being prepared, but I don’t leave or (usually) forget to get those answers. Most people have never seen a Tobii eye gaze setup, though, so in my limited, recent experience, they do tend to look at the screen and try to figure out how it all works.
 
Yeah I often halted people - they wanted to finish things, or just move on if Chris couldn't get going fast enough for them.
 
There is a weekend sleepaway camp for kids of PALS called camp Hope Loves Company (HLC). My kids have gone everry year the last 3 years. But this year my husband and I joined them for the weekend. Normally my parents accompany them, but this year the camp location was fully accessible so we came. All the other adults there were CALS, more than half were wives whose husbands had passed away.

All of that background is to share that for one magical weekend I felt normal. Everyone slowed down their conversation for me, asked me to repeat things they didn't understand, and included me in the conversation as though it was totally normal.

You CALS are amazing and I love you.
 
Status
Not open for further replies.
Back
Top