PSP Association
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Speech aid

My loved one has lost his speech and some cognition. He tries to speak with me occasionally but it is nearly impossible to understand him now. I often try to guess at what he is saying by asking if it's something he wants, or going through a list of needs he might have. How frustrating it must be for him. He gave up even trying and just settled on my guess that he wanted a blanket. Today I've looked into a communication board. Does anyone have a specific recommendation. The hospital/patient boards are all related to illness. I'm thinking an alphabet board might be better. Does anyone have a recommendation? I'm in the USA if that makes a difference. C. can no longer write. His writing is illegible. He used to spell the word and I could often guess it. Even that is lost to us.

Wish I had forced the learning to use a keyboard back in the day!

signed,

Sad but persistent.

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There is an app called Verbally that is like a Stephen Hawking kind of key board. There is a free version to see if it could work for you then a $99 full version.

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thanks! will look into this.

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Hi,

We are in the UK but we bought a Speech App for my brothers Kindle Fire. It was really good and worked well until he lost all co-ordination in his hands and arms. It may be worth a look.

He now uses a sheet of paper that has pictures and phrases but its still very difficult for him to use and us to understand.

Good luck.

Hugs

Sue x

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Out Speech Therapist did out the alphabet on one side of the page and then on the other side a list of words and phrases W would use frequently and names of family and friends. Then she laminated it so it will last. Although he can still talk albeit slurred at times and very little volume, he can use the sheet when he gets tired.

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Hi Hubetsy: We are trying to work with custom app on an iPad currently, that's being provided by a non-profit organization, but before that we experimented with the GoTalkNow app for iPad. It wasn't bad. I find though, that my hubby is losing cognitive strength and gets extremely fatigued through the day, so anything "tech" seems to be asking too much.

The team thats working with the custom app gave us a laminated sheet like Nanny said, with qwerty keyboard alpha keys on one side and phrases that I told them on the other. I find he's more likely to use that when if left to his own devices.

If hubby says something short and generalized like "find it" or "tell me", I'll ask him to think of what he wants and think of the main word and try to spell it pointing to the letters on the laminated sheet. Often he can point to letters where he can't "say" the word. As long as I get one main word I can narrow down the "guessing questions" to zero in on what he's trying to say!

Whew! It's a lot of brain work for US! ...maybe that's a good thing sometimes :-)

Good luck!

Anne G.

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I am a bit concerned about the tech aspect but since one of the apps is free and I have an Amazon Fire which I use only to find my phone (! Alexa, find my Iphone. Really. ) I'm hoping we can find another use for it.

Communication loss is perhaps the biggest difficulty I face. Strangely, the evenings are when he does best. The opposite of "sundowners"

I'll also get busy with making my own version of the laminated piece you and Nanny used. That sounds more his speed.

Cheers!

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My hubby is best at night too. Fewer distractions maybe?

Another good thing to put on your "phrase" side of the sheet is a 5-point scale, e.g.

1 (Bad)......2......3 (OK).......4.........5 (Good)

Worlds for things like how do you feel - how was that last carer - did you like that supper

Etc!

Let us know how it goes!

Anne G.

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I used a laminated sheet with words on it too. It really worked well until just before G died.

Marie x

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I tried a board with magnetic letters but it does not help John at all. He gets so frustrated that he cannot get his words out most of the time. He can answer yes and no but not always in right places

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I replied to Hubetsy above re a 5-point scale: even if words stop working could a 5 or 3 point scale with sad face happy face at the poles work for him?

Anne G.

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Hi hubetsy!

With the information you will find in this chat you will have to build your own solution through the "test-error" system. That has been at least my case.

Find out if there is a member of this chat near your city who can guide you on how to find the necessary help.

By private mail I will send you my experiences wanting to be useful.

I have some models of "communication panels" in .peg or .xls that may be useful but .peg or .xls are not files that support this chat. I would have to send them to a conventional e-mail address.

Hug, calm and courage.

Luis

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I ordered a communication board on amazon for around $20. It has an alphabet on one side and the common symbols and words on the other side.

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After trying every app & non-verbal communication aid like pictures, etc, i have settled for simple "Lift 1 finger for a YES and lift two fingers for NO" arrangement with my mom who is in the same condition.

Phrase the questions in such a way that the answer is either YES/NO.

Follow it up with subsequent question/s again in such a way that the answer can be given in Y/N

"Lift 1 finger for a YES and lift two fingers for NO"

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Yes, I did try a few.

I purchased a magnetic board with "soft" letters. The only success we had was "STEAK" request for supper. That was it. Then we found the letters when bent didn't sitck well to the board. He also just didn't want to use it.

I'm convinced that some of his silence is actually a passive aggressive anger thing. He seems always to answer questions (in the affirmative) when it comes to food. Other questions, even simple yes/no questions are ignored.

It's a point of contention.

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Lots and LOTS of sympathy for that situation, hubetsy!!

We experience the same. You can only do what you can do.

I try to tell my hubby that I understand it must be awful to be without his full communication: that he was so articulate before and he must grieve and be angry at the loss of such a critical facility as communication. Still (I say) I need to know what he thinks and I can't read his mind, so please be patient with me, and try to help me understand him. Sometimes putting the emphasis on Me as the one who needs to "try" to "work" (like I'm the handicapped one..) at something, seems to help. Maybe it puts his resentment in another perspective - I don't know...I just try everything (as I'm sure you do!!)

Hugs to you XXX

Anne G.

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great suggestions.

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Regarding the "I'm convinced that some of his silence is actually a passive aggressive anger thing." part; I'd urge you to think about it from their point of view.

The sheer draining/exhaustion/frustration they might be feeling at their inability to communicate their feelings/expectations/reactions - even simple things. In such a situation they might be simply feeling too dejected/drained to communicate their POV, save for the food related Q's.

This horrible disease takes such a heavy toll on both the carer & the person affected.

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Of course you are right. The draining exhaustion and frustration is likely why he feels angry. He is surely drained of all resources. Hence, the behaviors.

The disease is a family disease, sadly. Like any major disease, it effects the whole family. So glad to have this site to seek support and express my own frustration.

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