Communication

[Chase_Corin]

I guess I am just venting, on top of the not being able to taste anything my dad recently recived the electronic communication device of his choice an iPAD, that sits on our kitchen table.

Does he use it? Yes, to check his e-mail and lottery numbers
Does he use it for the purpose inteded? NO
Can we understand him when he speaks? NO

I love my dad but he used to grumple answers when he could speak and now that his speach is getting worse it's like 'reading the russian alphabet hard' trying to understand him. Then he gets frustrated if he has to repeat himself. UGH! I guess maybe I am just tired but we have given him the tools to communicate with us why is he so resistant to use them.

I have even programmed sentences that he uses all the time into the damn thing and he still dosn't use it. Heck he can even call the dog with the thing but he would trather bang his cane against the banister to get the dog's attention.

I don't know am I the deranged person in the room or am I just assumeing too much by wanting my dad to be able to communicate clearly with people. I don't want his wishes to go unheard and I don't want him to feel like an outsider in a conversation. I guess I just feel that by not useing this ability he is going to get taken advantage of or his wants and needs may get lost in the shuffle.

 

[trfogey]

but we have given him the tools to communicate with us why is he so resistant to use them.

I can give you some ideas why your father doesn't use the iPad. The "bulbarians" here can probably come up with reasons that I would never think of. Unfortunately, the only one who can give you the information you seek is your father, so why are you asking us and not him?

I have even programmed sentences that he uses all the time into the damn thing and he still dosn't use it. Heck he can even call the dog with the thing but he would trather bang his cane against the banister to get the dog's attention.

Your description of the device in this paragraph -- "the damn thing" -- is probably the answer that your looking for because I'm betting your father calls it the same name in his mind (and in bulbarian, whenever he's out of your presence).

And as long as it remains "the damn thing" in his mind, it will sit on the kitchen table. You have your reasons for calling it "the damn thing". Now you need to find out why he's calling it the same thing.

I don't know am I the deranged person in the room or am I just assumeing too much by wanting my dad to be able to communicate clearly with people. I don't want his wishes to go unheard and I don't want him to feel like an outsider in a conversation. I guess I just feel that by not useing this ability he is going to get taken advantage of or his wants and needs may get lost in the shuffle.

You're not deranged, Chase, but you do have unrealistic expectations. An AAC device is a lousy replacement for a human voice. It's frustrating and slow. There's no spontaneity to it. It's impossible to carry on a multiperson conversation because other people don't slow down to let you get your response typed and transmitted -- which becomes slower and more difficult as the PALS progression gets worse and makes the device more challenging to operate.

Most of all, each of us has an internal image of what our voice sounds like and very few of us sound like the artificial voices from the AAC devices. Even Stephen Hawking complains about the voice he's had all these years -- he says it makes him sound American.

There are two things you need to do here. First, find out why he's refusing to use the machine. And, for goodness sake, hear him out to the end and don't argue with him. His reasons probably won't make sense to you until you've thought about them from his perspective for a bit. Second, give him some time and space to grieve the loss of his voice. Quite frankly, he might not be in a talking mood right now, so respect his wishes.

 

[notme]

The only thing I'll add to what trfogey said is this: Is the iPad his choice, or is it what you all decided he should have? Does he really understand how to use the features?

You can sympathize with his loss of voice--but please be aware that a little sympathy goes a long way--and can get irritating for the one afflicted with any disabling condition, not just ALS.

Sit down with him and see if there is something he wants or needs from you. Let him know you understand his frustration. Give him credit for using the iPad at all. Perhaps the touch screen is difficult for him? There are other devices if this is the case.

I can guarantee you that if you're frustrated with him--he's ten times more frustrated with the entire situation. How long has his voice been gone? Everyone goes through a grieving process when there is a loss--anger is one of those stages--combine that with frustration at not being understood--and it balloons from there.

Good luck

Edit to add-- there is a rant thread--by all means, rant when you need to! But try not to let the frustration you're feeling show to him. And don't be condescending either. Find a way to emphasize with him.

 

[rachelg]

Hi Chase

My PALS has had every device going - when he could no longer hold a pen he had iphone then ipad. With no movement at all he now has eyegaze which he is absolutely amazing at using.

HOWEVER - he is happiest using an ETRANS spell board.

At first this used to annoy me as I couldnt for the life of me think why he would prefer this slow, tedious, basic form of communication. But this is what I think, and I may be way of mark. Its about expression.

On a speech device - HEADACHE - is just headache. When I am sat right in front of my husband watching his eyes as he spells on ETRANS, watching if his eyes are soft or sharp giving him my undivided attention - I can tell exactly what type of headache he has - be it a sharp stabbing headache (sharp staring eyes) or an aching dull headache (soft, sadder eyes).

On a speech device - I LOVE YOU - is just i love you - sat in front of him - I can read his face and eyes as he spells it - he could be saying - oooooh i love you - or i love you you daft thing or I love you, you poor thing I know its a tough day. But all he has spelt is I love you.

Expression is everything, and its two way - he can see my reactions as I watch his. Its also about the closeness of undivided attention for each other.

Yes it takes a long time, we both have to be patient, the concentration on both parts is intense but his eyes tell me everything even without words. Speech devices are expressionless with no warmth and carry with them a feeling of - there you are get on with on your own.

I may be wrong.

 

[momap53]

Rachelq, I think you're right on with your assessment. The gift of time and close contact mean the world.

 

[brenda barton]

I am getting some kind of talking machine mid week and am hoping it relieve some frustration for me as friends/family cannot understand my garbled speech. They keep guessing and I get more frustrated. I resort to writing down a word while they hold the paper firmly to the table. I too have bulbar. Anything will be an improvement.

Has anyone of botox for bulbar loss of voice? Does it work?

 

[kiwisally]

I have found that people who really want to have a discussion with me come right up, sit beside me, look at the screen and read what I type rather than stand or sit and wait for me to finish typing and play what I have typed using the voice. By and large these people know me, they know how I spoke and what I might want to say. They don't care if every word is spelled correctly and all the spaces are there so the TTS voice will speak understandably, they know what I am trying to get at after I type part of a long phrase and they say it for me so I can move on. There is true intimate conversational interaction almost like when I could speak. These people interact in a way that lets the TTS device (whatever it is) melt into the background and we have a more personal form of communication just by the simple act of sitting beside me and focusing on the conversation in a way that they would have naturally if I could still speak. I've come across 3 or 4 strangers who did this on first meeting them and I'm not saying ONLY my real friends and loved ones do this but I am saying I can tell instantly when someone really wants to have a interactive conversation with me by they way the deal with the TTS device. I am sure some people might say some are just shy or put off by the device itself. I don't buy it. It's just some people some times want to know what I say so badly that they can't wait for the voice to play and why should they ......they want to interact, communicate, give and take like before, they want to read (and I am sure in their head it is my voice they hear) and others are happy to wait for the $55 voice upgrade, because they are more interested in the imparting of information that the experience of intimately communicating. So Rachelq I totally understand about wanting to use the ETRANS spell board. It's intimate and your understanding of that is simply lovely.

 

[Katie C]

And because cognitive issues tend to be more common in bulbar onset... are you absolutely 120% sure he understands how to use it? Not the dad you "knew"... but the dad he is now?

 

[cubcake]

Have you ever tried to type while someone is looking over your shoulder? Yikes! My pALS doesn't use his iPad either, mostly. He would rather write on a piece of paper than try to type something out while everyone is looking on. I don't blame him, one bit.

Also, if FTD is an issue at all, his writing skills may be declining, as well. I know my DH is struggling with that, a lot, right now, and it will only be a matter of time before we have no communication left.

I cherish his scraps of paper with his endearing notes, his gentle requests or his (the latest) tattling..."The cooter in the cat is on the Mom plant!" Translation....The cat is on the counter eating the plant your Mom got you!

Let him choose his own method and be grateful!

Same thing with your kids, right? I've become the Queen of Texting! Do I like texting? Nope. But if I text, I get a response in 30 seconds and if I phone, I get VoiceMail!

 

[panguinjen]

I agree with the suggestions given. Rog has not been able to speak clearly since before Christmas and uses pen and paper, ipad, texting to communicate with us....we watch his expression closely to make sure that we understand the meaning behind the words. He and our daughter havve an active conversation using text (she always answers) and he's become very adept. Give your dad time, this is so hard to cope with, and have him program in his sentences...he'll become more comfortable when he does it himself.

Jen

 

[kiwisally]

People tend to fall back on what they know. Expecting some to learn a new skill set (typing) at what is probably the most horrible and stressful time of their life is pretty unrealistic. I was taught to tough type as a 12 year old. I can type without thinking about spelling or location of keys and I can type as fast as I can think. I don't need to look at the keypad at all. At this point I find an iPod or iPad slow and clumsy. Other might find it too hard for them to find the letters quickly and prefer to write with pen and paper and for them that is the fastest. It's all about finding what is comfortable for the individual and their current abilities.

 

[KKay]

I understand your frustration and his. My husband has a dynavox eyegaze that he could communicate clearly on, but tries to talk instead and doesnt bother to speak when he is tired. My feeling... use it or lose it. Speak until the frustration is too much and you have to resort to the only option available - "the damn thing". It is sad but really if he really wants something and isnt getting it he will use if he has too. Sometimes my husband speaks and I just have to say "Nope, I didnt get any of that. Try again." I just remind myself patience, patience, patience... Although I will say that if he starts banging and grunting for the things he wants he will be forced (by me if necessary) to use the communication device. BECAUSE THAT IS WHAT IT IS FOR. First let me say I dont think I would have to because he is reasonable (and stubborn). But if it were necessary I would just do what I normally do for him and ignore the rest of his requests until he started making it easier for me to understand him. That may seem mean to some people but so is acting out in frustration to those you love (and who take care of you) when the ability to communicate kindly and lovingly is at your fingertips.

 

[trfogey]

My feeling... use it or lose it. Speak until the frustration is too much and you have to resort to the only option available - "the damn thing". It is sad but really if he really wants something and isnt getting it he will use if he has too. Sometimes my husband speaks and I just have to say "Nope, I didnt get any of that. Try again." I just remind myself patience, patience, patience... Although I will say that if he starts banging and grunting for the things he wants he will be forced (by me if necessary) to use the communication device. BECAUSE THAT IS WHAT IT IS FOR. First let me say I dont think I would have to because he is reasonable (and stubborn). But if it were necessary I would just do what I normally do for him and ignore the rest of his requests until he started making it easier for me to understand him. That may seem mean to some people but so is acting out in frustration to those you love (and who take care of you) when the ability to communicate kindly and lovingly is at your fingertips.

Spoken like someone who has never attempted to use one of the "damn things." At least not for any length of time. And knows that there is little chance that she'll be personally stuck with similar communication difficulties in her lifetime and be forced to put her money where her formerly operating mouth used to be.

 

[Toto's Dorothy]

Tr, my sentiments exactly.

 

[kiwisally]

Tr ****LIKE****, Thanks for saying that. Sometimes I fricking forget and attempt to say more than one word with a head movement accompanying it. No one can understand me any more, not my children nor my husband. My children simply bend over backwards to find the damned thing, my husband, the same, usually accompanied with a version of "My dear Love, I am so unbelievingly heartbroken that I can not understand what you are trying to tell me, I would lay down my life right here and now if I could understand you clearly again for just one minute, I am unbelievably sorry that I can't figure out what you want before you needed to ask me, I want to help you any way I can to communicate and make it as easy as possible for you because I can't even imagine what it must be like, even though I have put myself in your position and used the bloody thing as you have to, just to try and understand how it might be for you. I know it is not just up to you to make all the effort to communicate with me, we are a team and we will work together to understand each other now and later, no matter what it takes, even if I have to do way more than my fair share of the work". Saying all that and more would take up a lot of time, he most often conveys it with the tilt of his head, the wink of his eye, a smile at the corner of his mouth or just a tear on his cheek........I expect each dear one who can no longer speak clearly enough understands how their loved one feels too when they attempt and fail. I don't get frustrated very often but I can understand why some might not even bother to use the damned thing thing in the first place. It's a lot of effort, a lot of effort and I can touch type with accuracy at speed. Tr, can you see the tear mate? Sainthood, I tell ya......