My PALS does not want to use his eyemax

[pamdemonium]

Hello-
My father-in-Law received his Eyemax a few weeks ago. It is all set up and we have worked with him to make sure that it is properly configured for him. After practicing for a while, he got tired so we took a break. Several times over the course of that weekend, I asked him if he wanted to try again and he shook his head no. I finally asked him if he hated the eyemax and he shook his head yes. He has not wanted to work with it since.

His refusal to use it hurts my mother-in-laws feelings because she feels that he no longer wants to make the effort to talk to her. She is also his primary care giver and it makes her life much harder because she has ask him many, many yes/no questions to find out what he wants or needs.

I miss talking with him. It feels like we have lost him already.

I am trying to understand why he would not want to use this tool. It concerns me that is this could be a bad sign about his state of mind.

Can any of you share any insight?

Thanks,
Pam

 

[Ms. Pie]

I'm so sorry you're distressed. How long ago was he diagnosed?

 

[pamdemonium]

His first symptoms were in September 2009. He was not diagnosed until January 2010.

 

[Ms. Pie]

Might it be too difficult for him to use? It takes very little to tire a person with ALS out. Only your dear Father In Law knows the reason for sure. Can you ask him why?

 

[pamdemonium]

He cannot speak at all. Only nod up and down or side to side. It is really difficult to comminicate via yes and no questions when it comes to the more complex topics like emotions and motiviation.

 

[trfogey]

Maybe he doesn't want to communicate thoughts and emotions right now.

I detect a distinct case of overinflated expectations here. Could be all the way around or could be just some folks, but definitely present.

Essentially, using one of these "devices" to communicate sucks, in a word. Expecting him to carry on more than minimal conversation is asking way too much of him at first (and maybe for a long time), simply because it is so much effort. And when it is that much effort, only important things are worth the effort, and his idea of what's important will certainly differ from yours. Fortunately, it can and will change over time.

If you really want to get an idea of what it is like to be dependent on one of these devices for your communication needs, here's a challenge for you -- go through an entire recreational day without speaking. Use only text messaging on your phone or Internet chat on a computer for every single thing you would normally speak. If the person's in the same room with you, you can open an editor window and the person can read over your shoulder.

Go ahead and make it really challenging and invite a couple of friends to go out to lunch with you that day. See how difficult it is to compose and send a response during the average conversation. Watch the impatience grow on their faces while they wait on you to answer their questions. See how long it takes before they start trying to finish your sentences for you.

And remember -- you have the choice to stop and go back to speaking any time you want to -- he doesn't. You have (presumably) two good hands to type quickly with -- he doesn't.

I'd bet a substantial sum of money that you (and most normal people) couldn't do it for two hours, and you would resent doing it the whole time. But you would understand how your father-in-law feels a lot better at the end of the exercise.

 

[Al]

Very well said tr. Even i who have used that type program never thought of it that way. Probably why I prefer 1 finger typing.

AL.

 

[pamdemonium]

First off, you have made some pretty strong assumptions based on some very limited information.

My FIL used to be able to communicate with us via his ipad and no one ever got impatient with him waiting for him to type a response. We were all grateful that he was able to do that as long as he could. Those days are gone now.

And no, I know I could not do what you are suggesting for a day or probably even for an hour. That said, it does not mean that I do not have a very good understanding of how unbelieveably, gut-wrenchingly hard this must be for him. That is the great thing about being sentient beings, humans can understand how something would feel without having to actually experince it. When I think about how this must be for him, it literally makes my heart ache.

When we first learned about the eyemax, we were all very hopeful...maybe too much so. Since then, I feel like we all have tempered our expectations. My husband and I both sat in front of the eyemax and tried it ourselves. It was exhausting. And you are right, it does suck. But it is the ONLY option we have right now. And while it is certainly his perogative to keep his feelings to himself, it seems like our time with him is running out.

I can see the frustration in his face when we are asking him 20 questions trying to determine what he wants or needs. We are all dedicated to making his life the best quality that it can be. We thought this tool might help us accomplish that even just a little bit.

All I want is for him to try. For a minute or two.

I came here merely trying to gain some understanding and insight.

 

[brooksea]

Can he use a switch? If he still has some movement, he might find that easier.

 

[catcaniac]

Just wondering if anyone has gone in and made page sets with only buttons specific to his normal requests. We don't have the Dynavox but we the Tobii and I think they are pretty much the same. I went into the board with the abc pages and took out everything. There are now only a few buttons to choose from on each page for Eric. For instance, when he chooses the A button, the page only has "arm left" "arm right", etc. We also use the menus without him having to use his eyes. I scan through the rows with my fingers, find the row, and then touch the letter he indicates. Then we just have a few buttons to find out what he is after. If he had to use his eyes for everything, I doubt he would want to use it at all. He hated it when we were doing it that way. He can also spell things that way by scanning each row and saying, "is the first letter in this row, second letter, etc"The only time he completely runs the system himself is at night. There is a program called SonoKey. He has two screens, a rest screen and an alarm screen. I copied and pasted so that almost anywhere on the screen was a back button or on the other screen an alarm button. It cuts down on having to focus on one specific spot. That also is easier because when repositioned, certain buttons are harder to focus on.

 

[pamdemonium]

CJ-
I am not sure what you mean by a switch. The only movement he has left is to slightly nod or shake his head to indicate yes or no. And he can move his eyes around but he cannot blink at will. No hand/leg/body movement at all any more.

Catcaniac-
I did create a screen with just his most common requests. We have also held up the ipad with a keyboard displayed and worked with him to spell out things by starting with the row the letter is in and then narrowing it down to the letter itself.
Thank you for your suggestions.

 

[brooksea]

If he only has slight movement, I don't know that a switch would work. Anyway, I mean a Jelly Bean Switch. I'll put the link in the following post, as it will most likely go to moderator.

 

[brooksea]

http://www.enablemart.com/core/media/media.nl?id=68866&c=644149&h=b3b60a474d2125514b41

 

[Al]

Not bad CJ. 20 minutes for mod.

AL

 

[Jellycat]

Pam, sorry, so sorry to hear of the tough times with the dynavox. We don't have one so I can't offer you any insight on the machine. When my mother lost her speech it was devastating. When she lost her ability to use assistive technology, it was devastating all over again. Lots of feelings to work through for us both. I do hope things ease for your pals but also want to add that though the whole yes/no situation is complex and hard, with time you may adjust. We have been on yes/no only for 7 months now. Tonight I watched my cousin put her face on my mothers pillow and gaze into her eyes. It was beautiful.