PSP Association

Communication difficulties

Please can anyone offer any advice on how we could possibly elicit a response or a choice from my mother. She has very advanced PSP and can no longer speak or write or even indicate yes and no using the thumbs up or down method.

Her frustration must be excrutiating and it is very difficult for us her family, as it is for her nurses and carers.

Thanks for taking the time to read this.

Xx

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Have you tried having her blink for yes and do nothing for no??? We haven't reached that stage yet and I am curious to hear from those that have already gone through this as I am sure I will need answers in the near future as well

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Sadly she is not able to blink on command.

Thank you for your reply. X

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i agree it is v difficult asa PSP person finding a quiet s[]

spot 2 enable my quiet voice to be heard

lol jill

]zzzzxxxx

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She can understand alot more than she can convey. If you say "yes" or "no" and if possible use hold her hands in thumbs up or down position, this might help. This helps my husband (though he can most times do this independently) . He shakes his head yes or no. It is so quick and so minuscule of a shake that if you are not looking , you will miss it...But again, he can still do the thumbs up down rule. So .

Like pzagy suggested, blinking of the eyes might be a way. my husbands lids don't work like they used to. Assisting her with her choices as prescribed, might work, if her lids are difficult for her to move.

Good luck there are so many little things that become BIG things we always took for granted as doable...I wish you luck and Godspeed

AVB

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I am sure my mother's cognitive abilities are not impaired at all, making it all the more cruel for her to be locked inside her body.

I cannot imagine what it must be like to never be able to say one more wod in any way, shape or form, or smile or hug.

Thank you AVB

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Practice nodding and shaking of the head and the thumbs up and down, repeatedly, every day. The repetition does help to some extent, sometimes. I'm afraid it's ultimately a losing battle. My guy often can't hold a question in his mind long enough to answer it any more.

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Sadly my mother cannot nod or shake her head. She can do nothing on command. All that is left really are involuntary functions and reflex actions.

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Yes, my guy is about the same sometimes. But I did manage to claw a bit of function back. If your mother has nothing but involuntary and reflex actions I cannot imagine how she could communicate. I am so sorry.

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Thank you

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Same .but we get the occasional words . So hard frustrating. I seem to be asking repeatedly . Eyes shut bug very trouled eith sucking jus lost together tightly . I think ! To stem the drool but it causes mire thickening of mucus .

Gets dytonia jaw tongue

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My mum is in the same position, recently we tried squeezing the hand once for yes and twice for no. It helped a little bit is increasingly hit and miss. It is very hard at this stage, we just have to second guess what she wants. We try to keep her hydrated as she is on a catheter and atropine drops, but will never ask for a drink. I really feel for you. It is very hard and sad to watch someone we love unable to express their needs.

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We did have some success with hand squeezing when all else was impossible. One squeeze for yes and nothing for no. The squeeze got almost imperceptible towards the end but if you waited long enough you could just make out a tiny movement. This was very helpful for us both I think.

V

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Sorry but the lock in is one of the most cruel points and times of last stage PSP. M could smile and given time give a thumb up or squeeze a finger though care needed as she had no idea of the pressure she could exert. The issue was time for M to process the response grew from instant to up to 30 seconds. It required patience to ask a question and get a correct reply.

I agree the head nod lost about a year ago, blink lost 9 month ago eyes open or closed. The last 2 months she got slower in her responses and you only knew you had the right response was her smile but even that slowed in the last month.

All I can say is keep trying and talking at her, she understands and is trapped. Best wishes Tim

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Sadly in this last stage it is just about impossible to know their wishes. But at this stage I believe they know they are dying and really don't mind you making the decisions for them. Questions are probably useless as they can not respond. What I do believe they want is your nearness, your loving words and touches your hugs and hand holding. You telling them you love them and are proud of them for getting thru this horrific illness. Relate activities of other family members. There is hardly any time left so treasure it to make sure you tell them all you want to. Make it quiet and calming not worrisome.

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Also know too there is the possibility that you can confidently make those decisions because you know them so well and they are, at this stage glad to not have to be bothered by them. They are dying. They just want your love and your touch for as long a time as there is left. You can make the decisions later. And as hard as it is stay with them as much as you can. Those close to death have a tendency to run out on us when we aren't looking!!! Stay and pray as much as you can. And we will be praying for you.

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Jessica, we are at exactly the same stage with our mum. It's awful. She's trying to speak but it's just a wailing noise. And writing things down is now illegible as she doesn't move the pen along. I ask her yes/no questions and tell her to squeeze my hand for yes or do nothing for no. Sometimes it works but other times not.

Sending you much love

Michele

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Michele, thank you.

Michele is my mother's name.

With the squeezing method we found we had to wait anything up to two mins for a response (if one was coming). This apparently is normal processing time for someone with PSP.

I am finding now that Mum's centre of expression is her eyes and sometimes her sighs.

Wishing you and your mum the best possible.

Jessica

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hi j

i m not at that stage yet when i am it will eb v frustrating for me i know that now an i don't know wha tot say to ,amok it any easier for you and ur mum

LOL jill PSP PERSO N I NUK

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Thank you Jill. Xx

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I just read an article about how music stimulated nonverbal alzheimers patients and awakened something in them. Is there any favorite music she used to love? If nothing, it might give her comfort. It just popped into head so I figured I would mention it. This must be such an emotionally difficult situation for you to be going through. My heart goes out to you.

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Thank you Shelly.

We do listen to music together and Mum does appear to enjoy it.

I just feel that for Mum to not be able to indicate (say) "yes" or "no" to something is losing the last tiny bit of any autonomy she had left. :( :(

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So sorry. :(

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Jessica, I'm so sorry for you and your Mum. I was also going to suggest music. My own mother escaped before she lost the ability to communicate, so I did not have to face the very troubling burden you are now carrying. Wishing you both strength and hope you can both take comfort in going through this stage together. Amanda.

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Thank you so much Amanda.

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