Yes No

[Bergenser]

In the big picture it is not a big thing, but there is one feature of PSP I'm struggling with all the time. From quite early on, the "yes/no" questions have been a problem. It's like there is a different part of the brain involved in answering yes/no questions. A few years ago, my husband goes into a very crowded pub at lunchtime and the landlady asks "are you with the Rolls Royce party" and he says "Yes". By the time we arrive at a table full of strangers he corrects his answer to "No".

I ask him "do you want a snack" and he says "No". 30 seconds later he is upset I've not given him a snack. The neurologist told us this "yes/no" and "no/yes" pattern is common in PSP.

A few years have passed and I know better than to ever take his first answer. I know I need to ask several times and give plenty of time, ideally giving options instead of "yes or no".

I read about "squeeze my hand for yes" etc and I worry how communication is ever going to work when my husband loses his remaining speech capability.

Any insights from others would be hugely helpful. Xx

[Zerachiel]

I'm in exactly the same place with my wife, we use the squeezing fingers if she is struggling but I still ask both sides of the question to confirm.

The only difference I can see in brain function is when it is a physical issue she is responding to, do you need the loo or does that hurt will get a better response than do you want the TV on; I believe this may be due to her having something else she would prefer to do and is thinking about that rather than answer the direct question.

The only other suggestion I have is to look at his face when asking a question, there is very often a slight change for positive and negative.

[45purple]

Hi we are in the same place with my husband yes and no are different for him. It makes things difficult when asking him does he want a coffee it is usually 2 or 3 times before I get it right. Your not alone in this 💜

[Heady]

I am sorry, but this is very common, but yes, extremely annoying!!! The ideal trick is never to give a yes/no question, or come to that, any question that needs a direct answer. I learnt this the very hard way. Steve was in hospital, broken wrist. Was asked in pain, of course the answer was No! Until a very switched on doctor asked on the scale of 1-10 what was the pain, then came the truth, 12!

Also, when giving instructions, ie, - “don't move” never have the last word, what you don’t want them to do, it should always be - “keep still” or words to that effect.

I know this is a complete mine field and sounds so trivial, but anybody in the PSP world knows how big this problem is. I hav

[Heady in reply to Heady]

Sorry, pressed wrong button! I have been out of the PSP world for over seven years now, but still remember this problem vividly. Best of luck.

Sending big hug and much love

Lots of love

Anne

[Bergenser in reply to Heady]

Thank you, that was useful, yes the "scale from 0-10" trick works and clearly gets resolved in a different bit of the brain. We've used it instead of "how are you feeling today" - on a scale from 0-5 how happy are you - and he will say a number and or show fingers.

I recognise the "instructions" issue as well and the difference between "press the buzzer when you want to get up" and "when you want to get up, please press the buzzer". He will do the thing (immediately though, without waiting - that's a different problem)

Thank you for sharing your experience. 🤗🌻

[easterncedar in reply to Bergenser]

I was going to say what Anne said. Yes and no seems simple, but having to conjure opposing ideas is actually quite complicated. It’s also complicated for the carer to come up with ways to work around this. We use yes/no all the time. We don’t want to be taking charge in everything and we want our loved ones to have a say. Eventually you do come to posing questions or offering starements to which the yes is assumed. How about a sandwich? Let’s go for a walk!

[easterncedar in reply to Heady]

Hi, Anne! Nice to see you here, being wise as ever. Hugs to you, girlfriend.

[Richard33 in reply to Heady]

Anne,

Thank you for your wise words - that 'don't move / keep still' point I had not thought of....

Richard 🙂

[Heady in reply to Richard33]

Hi Richard, the old network is still working! NannaB taught me that little gem. How are you? Still coping I hope.

Sending very large hug and much love

Lots of love

Anne

[Richard33 in reply to Heady]

Anne,

It is lovely to hear from you. Still pressing on here - getting trickier but I have some lovely carers helping me and we can still get many a laugh out of Ruth!

Sending love to you too.

Richard 🙂

[SEADIVER]

Hi Bergenser,My wife has a similar problem. If asked a question she would nod her head for no and shake her head for yes . It took me awhile to get to grips with this new state of her mind. Now I ask the question twice just to make certain I get the correct answer.

[DeLids]

We're in the late stages with my Dad and the yes/no thing has been difficult for a while. I've found it better since I explained to Dad that his brain gets stuck on a loop and that we can break the cycle by using a different word. If he's perseverating (the bit where it's "no...no...no" repeating over and over) I ask him to press his lips together to break the cycle and then say to him if you want the TV on say "ok". Since the word is different to yes or no we generally manage to get that to work. I've also made a single page chart of his most common requests like "TV on" "I'm cold" so his carers can point to each in turn and ask him to say OK when he gets to what he needs. It's pretty rudimentary and a speech pathologist could probably do a better job but it works and is fairly low key/low tech. I wish you the best of luck with your husband. This condition is awful and takes every ounce of creativity we can come up with because everything changes so quickly. Take care of yourself x Katrina

[Bergenser in reply to DeLids]

Thank you, that is useful. It's easy to adapt the question to "Let's do this, OK?" and wait for a thumbs up or an "OK" / "fine fine fine". We've not tried the chart yet, seems like a helpful tool and I think I've seen an example in a previous post.

All the best for you and your Dad. 🤗🌻

[Leosta]

No, it's not a big thing, but Yes, it is because you have to tackle this problem several times a day every day.If I asked my husband if he wanted a sandwich and he said No, I'd then say So you're not hungry? If he said No I'd then say So you're sure you don't want anything? If that was the case he'd say Yes.

I guess I did that without thinking just to make sure. We didn't do the squeeze hand thing, tried it once and he almost crushed my fingers and wouldn't let go.

[Leosta in reply to Leosta]

I was also going to say, but hit the reply by mistake, that near the end when his quiet whispers were unintelligible I looked at his eyes when asking questions. As Zerachiel says, there is a slight change.Prayers for you Bergenser, it's not easy. 🙏

[Bergenser in reply to Leosta]

Ah yes, the specialist always does a little test where he puts his hands loosely on my husband's hands, and for the last year my husband has responded by grabbing the fingers. I have to extract myself many times a day to avoid my fingers getting crushed 😞. So, we need a better plan. The eyes express a lot, as long as he can open them. Thanks for sharing. 🌻🫂

[SimonandMaria]

The calmer the context the better the reply. A lot has been said in this thread on how to ask questions differently. PSP usually comes at an age where we know reasonably well our partners desires. Its much more difficult for caregivers that are not related to the patient.

It's very usefull to practice as soon as possible for a gesture for yes and a gesture for no. For my wife Maria it was thumbs up for yes and index for no... as different as possible the better to be able to cope, at least partly, with wrong answer. My wife then got to the stage where she was unable to express a yes or no, and my advice here is to accept you will do your best and that you don't know if you responded to their wish or not. Fortunatly in our case, what did remain as a volontary faculty was smiling and we just went a long looking for as many smiles as possible. A smile is in some ways a sign but dont take the absence of smile as a negative.