Hi. My mum passed a week or so ago from cancer and we’ve spent a better part of her decline putting things in place for Dad’s inevitable PSP dip due this.
Having spoken to my sister-in-law, she recommend that as dad has some (slurred) speech and can be understood currently, we start to put communication aids in place for when he might lose the option altogether.
But I’m not sure what we can use and what to put into place. Has anyone used anything that has helped?
What an awful time you are having! Strength to you to get through this!
I did not use any aids. We had no time. I wonder too how useful a bought aid would be before your dad lost the ability to use it.
Many here have used whatever hand signals or winks or grunts to give answer indication to a simple yes/no question. If he can thumbs up/down, then use that. Hand squeezes also have been used. Kisses? Get close and intimate to ask, rather than standing over him. Make it a bit of 'fun' interaction. 'Do you want something to eat?' Mouth open is a yes; mouth closed a no. If it works the first time, well and good. Chocolate may give an indication of whether it works or not!
Hope this helps.
Hugs
Jen xxx
Thank you. That’s given me some guidance as to what we use.
Hi
We tried a number of communication aids. The problem for is was of limited arm movement and compromised vision. The multi option printed cards with picture choices of alphabets didn't work for us.
What did work was gestures:
Thumbs up or down for yes and no. Later becoming hand or finger being raised and hand or finger moving laterally.
Pointing at the commode or nether regions for loo.
Pointing at tummy food or drink.
A hand movement or touching the mouth - "I wan't you to ask me something." This would be followed by me asking a list of things starting with categories:
About home?
About the nursing home?
About Care?
About Finances?
About medicines or treatment?
About us?
About Family?
About Moggie?
And so on.
Once the category is established one can drill down into the specifics.
'Yes' and 'no' signals can be further improved by adding a signal for 'something other' and 'keep going'.
My favourite gesture was a pout meaning 'kiss and a hug'.
I hope this helps a little.
Warmly
Kevin
Yes it does. I’ve been so scared of the lock-in that comes with PSP and that he wouldn’t be able to communicate. Thank you for explaining why the aids weren’t always suitable. Dad has little arm control and it seems to be getting harder to control movements if any controlled movements at all.
Yes, the lock in thing is horrid, but even now when my wife struggles to signal we reach through to each other. It's a struggle, but we get there. Remember too that eventually the person who eventually cannot signal may be quite cognitively diminished to the point that they are perhaps not suffering as much as a person with a lively mind feeling very cut off. I take some comfort in that.
I wish you all the best on this horrid, but doable journey.
Warmly
Kevin
We used to use the thumbs up or down but John cannot even do that now and so like Kevin just go through a list of things and he can just about manage yes or no most of the timex
What I did with my late wife is we got a tablet she was able to type on to the tablet what she wanted in any question she wanted it worked well almost to the end she was happy with it
A GoTalk will help you. It will be a lifesaver going forward.
1- I wonder if you could get a timer that awitches of the TV after 90 min and on again?
I don't have netflix so it is just a suggestion.
2-Youtube I noticed that youtube keeps starting a new item each time one is finished. However I don't kow how often this happens.
Standing Aids 
Communication 
Communication difficulties
Help in Communication 
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