Have a little patience

[BlueandGold]

I use an iPad and an app called Verbally Premium to communicate. All of my family, when they see me pecking on my tablet come over and try to guess what I'm trying to say or finish what I'm trying to say and respond when that wasn't even what I was trying to say. It pisses me off to no end. It would be the same as interrupting someone in mid sentence to finish their sentence for them. Everyone would consider that rude but for some reason it's ok to do it to me. I've told them to please let me finish my thought before they rush to read it but it's not getting through.

Do I need to be harsh. It really bugs the sh!!t out of me.

Vince

 

[gooseberry]

You gotta do what you gotta do....

 

[Atsugi]

Vince, I guess it depends on your temperament.
My rule number 68 is "never interrupt" and also includes "Don't finish sentences for others."
But my Rule Number Zero (really) is "Relationships before rules."
If you can do it, I always recommend keeping happiness in the family, rather than enforcing the rules.
Of course, if their interruptions are impacting your happiness, then you need to get their attention and tell them.
I wish you luck.

 

[swalker]

Vince, I encourage you to "speak up" and let them know that this is bothering you. A gentle reminder from time to time may also be necessary.

I suspect folks aren't doing this to get you upset, but to be helpful. If that is the case it is important to let them know what will really help.

It is human nature to try to help someone we perceive is struggling with a task. I would bet that is where they are coming from.

Steve

 

[affected]

Vince, how about you write this out in more detail for them explaining why it irritates you so much? They probably think they are being helpful, but rather than have a go at them, explain why it's important to you.

Then you could make a little sign and hang it up, maybe something like "Please wait for me to finish, I'm slow but I'm worth it." or maybe "You may think you know what I'm saying, but I would rather say it fully"

I have a few friends that I love a lot, but they often jump in and take conversations awry by second guessing me half way through sentences, wrongly, and so they steer things off in another direction. Pisses me off and is really frustrating to find we are talking about something else when I had something to say.

Stand your ground with as much love as you can, but you need to stand your ground and solve this now as it will only get worse as your ability peck slows even more.

 

[scaredwifetx]

Thanks for your post Vince. I know I have been guilty of trying to help my PAL with things he is trying to do. I think I am trying to help him but I can now look at it differently. Moving forward, I will ask if he wants my help before taking over. Maybe letting your family know how much this bothers you (and it should) will help them to understand.

This road is a long road that we haven't traveled before. We need to pay attention, proceed with caution and try our best to enjoy what we can of the family trip.

 

[twitchykitty]

Oh Vince I feel ya. My mum bless her soul finishes my sentences when talking . I told her nicely it is frustrating 'if she got it right it'd be ok' so now she tries not too. She said said she thought it made it easier than struggling to talk. I use speak it on the iPad, I found it faster than verbally and it helps if the iPad keyboard has word predictor which I had update the iOS version to get

I'm mean if my sister tries to read what I'm writing I tilt it away from her. I'll admit I was guilty at the MND clinic years ago of doing that to a lady , man I felt bad when I started using mine to talk , I too thought I was helping at the time and making it easier .

I would definitely tell them how you feel otherwise people just don't understand

 

[BlueandGold]

I think I just need to deal with it because I have already told them how I feel. Not worth getting people upset. This goes back to a thread I started a year ago where I talked about fading into the background. The other thing my family does is change the subject even if they see me still typing. Or my wife, for example, and I will be conversing (me using my tablet) and even though I'm still typing, she will just leave the room and do something else.

I'm just going to observe and if someone wants to talk to me I'll talk back, otherwise I'm keeping quiet.

Vince

 

[Ells]

Vince, totally agree w/ you; it’s rude!

When anyone starts guessing what words I’m next going to type, I just clear the screen and stop typing! I used to put up with it, but no longer. When they say “What were you saying?”, I explain how demeaning it feels to have someone guess my thoughts to finish my sentences.

It was comforting to hear Stephen Hawking in an interview complain of the same thing and of people walking away mid-sentence as he slowly typed – what hope have I?

I think you have to say something, for your sanity & pride.

 

[Nikki J]

Don't let yourself be silenced. I have been guilty of this with eyegaze. It was such an effort for my sister to type each word I was trying to spare her. But I think I had asked and she said it was ok

 

[Green Queen]

Oh Vince, it makes me so sad to read your words.

I have a point, so bear with me.

Years ago, my church launched a marriage course trial. Wayne and I took part. We'd not long had our first baby, I had post natal depression and we needed to find ways to communicate again.

One thing that we learnt about having our partner listen and actually 'hear' us I'm hoping could help you.

Vince are you able to type with one hand, and hold your wife's hand as best you can in the other?

Holding hands means she can't walk away, she has to listen. It also means there can be no finger pointing, slamming hands onto the table etc.

Another thing we learnt is how to word things. It can be a very different conversation with the right wording.

It's about putting the onus on yourself. Otherwise the other person gets defensive.

Instead of saying "you don't let me finish a sentence," you say something like "I love talking with you, and finishing sentences so you know what I want to say is very important to me,"

Stuff like that.

It must be difficult for your family, not hearing your beautiful melodic voice, but they truly need to learn the difference between you needing help and you wanting help.

 

[BlueandGold]

Would that it could be that eSy Janelle. What you describe takes a willing participation from both parties. My bed has been moved downstairs as I can't climb the stairs anymore. My wife gets my meds ready and gives them to me. She makes me meals in the vitamix then goes upstairs to her room and watches tv for the rest of the evening.
I would be in heaven if just maybe once a week she would massage my legs or my neck or scratch my back! There is nothing more satisfying than a back scratch. I tell her how much I love it and how much I appreciate it but she NEVER offers it unless I ask. Recently she bought me a metal back scratcher. I explained to her that I couldn't use it because I couldn't raise my arms high enough to reach my back and can't reach around myself. She said, "Well, I tried", and left the room.

I just don't understand. 31 years I have given her everything she ever wanted, whatever it was. If the roles were reversed I would be asking her every 2 hours, "how about a back scratch" knowing how much she enjoyed it. I'm dying. How could anyone think a simple back scratch is just too taxing? I can tell you I won't ask any more. Hopefully she will have her freedom once hospice shows up. How sad to have your last days on earth with the love of your life turn into this. She also gets upset when I cry and tells me I need to stop. I've told her I can't control it. Sometimes just seeing my sons or grand sons sets me off and I have to go off by myself to get control of it. "You need to stop, this doesn't do you or anyone else any good". Seriously??? I'm starting to get pretty upset and if things don't change I'm going to make a change.

Vince

 

[KimT]

Vince,

Your post made me cry. Maybe she is pulling away because she is overwhelmed with the loss.....your loss.....but her loss of you as well. I don't know. I'm not making excuses for her but some are just stronger than others. Anger is just a manifestation of fear.

I'm so sorry.

 

[Green Queen]

Oh Vince...

You have been on my mind so much lately.

Now I know why. You have been so sad.

I firmly believe in the power of prayer, but I do wish there were something I could do for you.

Not that I want your sons to view their mum in a bad light, but I do hope they know what's happening to you?

 

[BlueandGold]

Prayers will be just fine Janelle. Kim, I really believe your assessment is correct. At least that's what I choose to believe. As my progression advances, I believe she now knows what will be coming. Before, I would see her on the porch or folding laundry or doing dishes and she would be crying. I think she has decided if she is to face my death, she has to become calloused. Not many people have months or even years to prepare for the loss of their loved one. She is pulling away and getting used to what things will be like when I'm gone. Maybe being clinical only with me will help her let go of Vince, her husband, and deal with Vince the patient.

I wish things were different. I so wish they were. However we are all different in how we deal with things as hard as this, which I believe there are very few things in this world that can touch ALS. I need to get out of this funk and accept the way things are and find the small joys in every day.

Vince