Extending Communication when Speech is Gone

Today I realised that my mother is losing her speech very rapidly and can scarcely answer Yes/No questions any more. Speaking was clearly so much effort for her today, that I asked her to adopt the new method of squeezing my hand to mean "Yes".

However, this won't be an option for much longer as she increasingly loses mobility. So it made me realise that pretty soon she may be physically paralysed, speechless and therefore not be able to tell me when she is in pain. I can't bear the thought that she might in future suffer this way.

Are there any methods that late stage PSP patients can use to indicate that they are in pain? If so, I should like to adopt them now, while she still has residual communication left.

Thank you.

Amanda.

10 Replies

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  • Dear Amanda,

    I really do empathise with you at this time. When my Mum got to the same stage she was able to squeeze my hand to indicate a yes or a no answer pretty much until she passed away, but was not able to do so every single time. In those instances I used a chalk board to write things and she was able to make some kind of a noise for a yes answer. This worked effectively but clearly only if the person being asked can make any type of sound at all. It is a very difficult time as in reality, the person in pain may not be able to convey that every time which is clearly incredibly distressing for all involved.

    I hope others respond with some ideas but the chalk board worked quite well for us.

    Kindest wishes,

    Kate

  • Dear Amanda

    Thank you for posting on this - my Mum is at the same stage and she really only communicates in grunts some limited hand movement to closed questions - she responds really well to having her hand squeezed and stroked and this can encourage her make some more noise. Sorry I can't be more helpful.

    Saz

  • Thank you, Saz. It IS helpful to hear how other people are coping.

    Perhaps when PSP sufferers reach the end stage, doctors will be able to provide pain-killing medication on the assumption that the patient is in pain but can't communicate it. I suppose this is a scenario that palliative teams face every day. I haven't given this much thought yet.

    Amanda.

  • Hallo, Kate,

    Thank you so much for that idea, I will certainly try it out now so we both get used to it. It is encouraging to think that you were still able to communicate with your mother however simply, right to the end.

    Thank you very much, I appreciate it.

    Best regards,

    Amanda.

  • Try not to panic-sometimes it comes and goes with tiredness and illness.

    My mum is like this most evenings but in the mornings she can communicate in simple or short sentences using maximum impact words. It's a good idea to start now though so she can get used to the system. Apparently the speech and language people can provide communication tools to help.Take care.

  • You are so right with tiredness, it makes all the problems (speaking, walking, swallowing) ten times worse. Yes, I will speak to our speech therapist.

    Thank you for your help.

    Amanda.

  • I've heard that some PSP caregivers use the eyes for communication. One blink for "yes" and two blinks for "no". I think most answers would be "yes" so most would be one blink. If you think majority would be "no" then make one blink for "no". Just a thought. I'll be there someday with my dear wife Sharyn and am not looking forward to that day. At this time her voice is very soft (always was but now even softer) and speech a bit slurred sounding but understandable with some repeating. God bless as you move forward. Share any ideas you get the work best for communication.

    Jimbo

  • Thank you for your kind words. This stage may be a long, long way off for your wife Sharyn, Jimbo.

    Best regards, Amanda.

  • Hello there !

    First of all, we used a book and gave Mom pens to write down what she wanted. The carers in particular needed this because at first they didn't understand her speech. Then when her writing got spidery the speech & language therapist brought her a lightwriter. She used that for a short while but because of the problems with the downgaze she couldn't see the keys after a while so I had to give that back.

    We then tried an A4 page - we laminated it because of drink spills - with the alphabet on it and yes and no. Bit like a Ouija board ! That was ok but it took a while for Mom to point out letters for us.

    I also tried some magnetic letters from a kids' toyshop. I got a large metal oven tray for her to put the magnetic letters onto and that was very successful for a while until she couldn't pull the letters off the tray any longer (because of muscle weakness).

    Towards the end I took photos of various things round the house - the toilet, a cup of tea, the cats etc and put the photos on A4 paper in a book - the idea being that if Mom wanted anything from the carers she would point to the relevant picture - the toilet, tea, cat - meaning where is the cat, some of the photos had a caption on too so the carer wasn't left in any doubt what she wanted.

    To be honest, me, my husband, uncle, and some of the very good carers became very used to Mom's erratic speech and grunts. We knew what she meant ! When I took her to appointments the staff at hospitals etc were amazed at how I knew what she meant with each grunt. I don't know how it happened but we managed very well indeed. It doesn't take long to get used to what they are asking for. Just a bit of patience. Mom said (on the occasions she could manage to speak) that it was such hard work to speak that it was easier not to. So she appreciated the way we managed with our strange communication, both through grunts and gestures.

    You'll get there ! Don't worry.

    Jane

    xx

  • Thank you, Jane, that was kind of you. Lots of ideas and things to think about in your reply. Just taking it day by day and trying to ask all the questions now, while she is still speaking.

    Thanks again for your help.

    Amanda.

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