assessment with neuropsychologist this morning....oh appts are so depressing. anyway dad as we know is having significant word finding difficulties but we're still communicating ok with speech for now. dad would have cognitive changes and is no longer able to spell (how he keeps taking the downward spiral in his function but still Carries on I don't know). I guess I'm.looking into the future but can anyone suggest communication device for when he can no longer speak that doesn't involve spelling,maybe picture based, or common words?
thanks in advance
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Yes, use computer if u can ( or cut out pictures from magazines, etc.). You can put several puctures on a page and organize pages according to topic, for example foods he frequently eats on one page, perhaps objects he would maybe need to ask for on another page, perhaps pictures of family on a page (take on phone and print or use ones u already have). The pages would depend on his interests and needs
Does this make sense?
You can put them in plastic sleeves and then you could put the sleeves in a binder if that's not too confusing.
We also have trouble with communicating. He seems totally with us, looks right at me, yet cannot seem to answer. I was going to buy a picture board, but it was not exactly what we need. Making one to personally fit him is a great idea. Thanks
We found the biggest problem with finding alternative methods was my dads inability to learn and process new things. He couldn’t even learn to press the call button for the nurse. By his last month or so we had to phrase everything for a yes or no answer and wait a couple of minutes for him to process the question and he would squeeze my hand for a yes response and nothing for no - usually best out of three too as he got yes and no back to front too- as even a simple choice became tricky. He couldn’t tell us simple things like needing to use the loo, so even though he was continent he needed to wear pads from lack of communication. It’s hearbreaking, I know only too well. Ruth x
thank you Ruth. I hope the good memories are flooding back to you and the PSP stuff is fading. even now my heart sinks at seeing him struggle with words, often he just shakes his head and gives up. such a horrible horrible disease
Interesting insight about the continence, Ruth: Maybe a good prep thought for me (we're not quite there yet-) would be to try a thing like the "doorbell device" and use it just for loo trips. If he can press the doorbell I can get him to the toilet. Other communication can be guessing with hand squeezes or thumbs up/down. This forum is SO valuable!!
It may be an idea to try and learn to use the bell sooner rather than later to make sure he’s learned how to in time, as his ability to learn may be lost. The other reason we used pads was the length of time it took to physically take dad to the loo once we realised that was what he wanted as eventually he needed to be hoisted from his chair or bed, so the more notice the better, the pads just gave him a bit of dignity in case we weren’t fast enough. Everything takes an interminable length of time the more the PSP progresses I’m afraid, it’s hard to understand until it actually gets to each down turn. Sorry if this is a rather depressing post but if you are like me, I like to know what is coming and be prepared as much as possible. Thinking of you Ruth x
Great post. I had the same problem last night, Mum was taken to hosp and the Dr couldn’t understand anything Mum was trying to say. Even I really struggled. So it was a case of yes or no answers. So frustrating as I know she can hear us just fine she just can’t converse ☹️
Richard has lost all his speech and the yes and no is the best thing for him. I have found if he spells letters out on the palm of my hand I can usually work out what he is saying. Like when he wanted his Christmas tree up. He was pointing and when he spelt it out on my hand I knew what he was wanting. He had only put ’tr’ and I just said tree and thumb went up. Sometimes yes or no can take a while to get out. It is very frustrating and must be for them.
I ordered a communication board from amazon. Has a pain chart, common pic with words for common requests hot, cold bathroom, thirsty, etc, and common feelings, etc. it also has an alphabet for spelling if needed. Much easier and more comprehensive than I could make and only around $25. Just search communication board.
Kevin,you've enough on your plate. thanks for thr thpughts and message. think mum had a realisation this weekend of what's prob my in store in the future for dad. just trying to figure out a way to make it as easy as I can for us all.
I think with the way our CBD is progressing we'll have to rely on picture boards. From the earliest onset G has struggled with communication - unlike any of the info on the typical pathway for CBD (or PSP for that matter) From cramped handwriting to inability to keyboard to not being able to find words, it all happened so quickly right from the initial stage - even as he continued to be able to walk, eat, think...
Just downloaded the free version - GoTalkNowLite - and it's great! Will probably upgrade once I'm used to it. G still has a little voice left, so am trying to use his recordings as much as possible. Thanks ladies!!
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Dad
Communication difficulties
Has anyone else had this experience with chc? 
Morphine & Oramorph. 
Communication aids - recommended?
