Just a quick question. Sometimes, we find ourselves speaking to Nela (my mother in law) in the way you would speak to a little child? Like we are trying so hard for them to understand us... Is that really necessary?... Is her comprehension handicapped do to PSP?...
Her speech is worst now... It’s getting harder to understand her?... and she’s getting to the point where she can hardly stand on her feet (even to help the caregivers when they move her between chairs/bathroom)
How to know where are we with PSP?
I’m sorry... It was more than a quick question.
Caya
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cayabrewer
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In my experience folk with PSP are anything but children. Which of course you know because you are raising this.
As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple english, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.
With the elderly who are slowed it is common for many to speak loudly. I have seen this a lot in Nursing Homes with staff.... Then when they get corrected, "They are not def you know." they then sometimes start talking in baby language... Imagine being on the receipt of that and knowing what they are doing! And, no, I'm not suggesting that is what you do. That is the comms. thing at it's worst. (I think I've gone off on one here! Apologies.)
As for where you are at. Read up on the illness' typical progression and then it is take each day as it comes. Everyone is different and even a few years in and with lots of experience you must be ready for things you did not expect.
I'm sorry you are having to face all of this. It's tough, but doable.
Heartfelt sympathies, you sound like a great carer.
No. Its not necessary. My husband who, pre-PSP was a quick speaker, said I didn't give him time to respond, when I thought I'd given him plenty. It was needed to slow down but his ability to understand was not changed, although he had cognitive problems. Just slow down and persevere. Its worth it. xxx
Agree ! It's been my observation that most medical employees talk to deaf, and older patients as if they are 2 yr olds. Medical employees need sensitivity training.
Speak to the person as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.
My husband could understand everything, right up until his death. Not that anyone would know that, he use to take ages to response, if he did at all. Looking at you with those vacant PSP eyes. Yes it did get extremely frustrating and no doubt, I, like everyone else in this world, spoke to him like a child at times, it's very hard not too, but equally unforgivable. Like everyone else is saying, speak normally, but make sure you ask questions that only need a yes or no answer. Give plenty of time for a reply and if giving instructions, always word it carefully. Often only the last word is remembered, I.e. "Don't move!" Or "Be Still".
Lots of love
Anne
Ps you never know wher you are with PSP, that's one of the horrors of the disease!
I can reword the same sentence five or six different ways and get a blank stare with no response. I tell myself to put on my preschool hat, not to talk baby talk, but for me to be able to slow down and to have patience. I know that he knows what is being said but his brain doesn’t allow him to respond. It can be very frustrating indeed! I also wear my preschool hat so as not to scold him if he leaves water running and walks away. Or the times when he goes to the refrigerator and stands there with the doors wide open while looking into oblivion. I tell myself to be thankful that he can still turn on the water tap and open the fridge. Crazy, right?
I’m finding it much more difficult to stay positive as I watch my husband shrink up and dwindle away before my eyes. It’s 2AM and I just now walked around to his side of the bed. He’s sound asleep but his feet were dangling over the edge nearly touching the floor. I tucked them back under the covers. There’s a bedrail near his torso that helps him get in and out of bed but I’ll be darned, he sleeps sideways and finds ways to slide out of bed. I say to myself, “Preschool hat, patience my dear!”
Geesh! Sorry, I didn’t know that I needed to vent. Your question about lack of speech touched a nerve that I didn’t know I was harboring, or it could just be the hour and my inability to sleep. That being said, I will do some deep breathing and try to get a little shuteye. There’s a field of dandelions that needs some seed spreading. Good night 💤
Your comment reminded me that quite a long time ago, before we knew anything was going on, Sandy would sometimes leave the room and leave water running in the sink. Another new behavior was leaving several cupboard doors open in the kitchen. He had never done these things before as he was pretty meticulous about things. My poor sweetheart. I wish I had known something was going on. I just thought it was unusual and careless behavior.
I wish he was here leaving cupboard doors open and water running - although he hadn't done those things for quite some time because he couldn't get to the kitchen or the bathroom.
I’m glad that you could relate to this and find some hidden memories. It’s so amazing what we take for granted! As I grieve for my hubby to get better, knowing that he won’t, I smile now when he leaves the toilet seat up and then I laugh hysterically when I actually fall in 😂This is something that he would never do on purpose, having grown up with 4 sisters! I don’t think that I could do this without humor.
How many times did you follow your sweetheart around to turn the lights out after he’s left a room? That, and ceiling fans? Now that I know what’s wrong with him I cherish these idiosyncrasies.
Hubby still thinks that he can be left home alone. The last time I ran a short errand to the grocery store he decided to take a shower! He knows that I need to be with him in case he has a spasm or falls. Anyway, when I arrived home he was toweling off. I asked him why he didn’t wait for me to return from the store and he replied that he didn’t know that I had left. It’s pretty scary when I told him several times where I was going and I kissed him goodbye more than once. Usually I leave notes around the house to remind him where I am and when I’ll be back, but this particular day I just wanted to run in and out real quick, be back home in less than 20 minutes. I should have put yellow caution tape across the shower door! I was dumbfounded that he showered while I was away. I am fortunate that he was okay but now I refuse to leave him by himself ever again.
Today I told him that I know someone who is going to spend the day with him for my birthday. I’ve arranged for the two of them to meet well in advance. I have a spa day planned in a few weeks and I’m looking forward to it. I explained that I need a “me” day. At first he argued, he told me that he CAN be left alone. I told him that he is right, but I will relax more knowing that someone is with him. He became very upset and apologized for being a burden. I feel like I failed him if I’ve made him feel like a burden. That’s the last thing in the world that I want. I’m not sure how I could have addressed it any better.
Thank you for asking how I’m doing. I’m trying to stay sane. Lol. I hope that when you see cupboard doors left open that it makes you smile and not sad. The littlest things can bring us to our knees, but they can also remind us of how precious it was to have had the experience of such a wonderful love.
Gosh another symptom I wasn't aware of! Even three years after Steve died, I am still finding new ones, that use to drive me mad. Steve's thing was noise. When he came in, he would always turn what radio or TV on, that was in the room he was in, then leave and go into the next room. Use to drive me insane. Only now can I just bear to have the radio on, in one room and the TV at night. This evil, evil disease, has been in our lives for an awful lot longer than anyone of us realise. Yet the professionals are still dealing with this "old" person's illness. I accept its hard, when nobody presents themselves until PSP is out of control, but surely, there are enough clues, to know that this has been affecting people, long before you see the consultant for diagnosis. I certainly told Steve's, but was poo-pooed! But then I only lived, observed him 24/7 and was only his carer, (I lost my wife title, the day they officially diagnosed him), so what would I know????
It just makes sense doesn't it that a gradually developing disease has been gradually developing before we see the neurologist.
My main regrets are the difficult changes in Chris that I was irritable about. Once he was diagnosed it all made a sort of sense. I was sympathetic to him and we both focused anger onto PSP. Before that I wondered where the caring, humorous , energetic man I had been married to for 50 years had gone.
When I think of all the times I thought our marriage was over, all the rows and snide comments, the old guilt trip starts to creep back in. BUT, none of us did know what was going on, least of all our loved ones. It was a long time into his illness, did Steve even recognise something might(!) be wrong. Even right up until the end, he thought he was just slowing down and would soon recover, if I stopped nagging him!!!!!! My heart just breaks at the agony he must have been going through. BUT, it wasn't my fault, I did the best I could, which thinking back, was pretty damn good. So I wasn't a mind reader, BUT, I always knew when he was hungry, thirsty, needed the loo and any other numerous needs. Jean we can bash ourselves up, until the cows come home, bottom line is we did everything we could, plus a lot more.
Holiday in SA was a great success. We had an absolute ball. All I felt was love and happiness in being back and revisiting places that held lots of happy memories, which I have now added to.
So glad S.A. was a success. I thought it would be. All past and present memories can blend !!
Yes. I try to soothe the guilt by reminding myself ( as we often did on here ! ) that caring wasn't the best job for me and we never applied for it ! We were survivors. Like you my heart breaks for Chris who so stoically and mostly humorously had to bear it all.
I have had to remind people that I need them to speak slower and that I'm not a child and that I've not lost my mind but continue as an adult to adult. Sometimes my frustration has increased to the point that I've been rather abrupt with my point. Believe me, it's an uncomfortable sight to see and hear someone with a neurological disorder get upset. Especially when you throw emotional lability into the mix.
My dad has declined slowly in this area. To start with we left a long pause before we received a response. His speech declined at a similar speed to the length of time it took him to process information. We progressed to writing down what we were saying and he would read it over and over before responding. The next stage was sentences with a yes and no answer. He would circle his reply. More recently the reply has not been constant and he responds with thumbs up or down. Now he no longer talks/writes and it is very difficult. I still talk to him about the day, his grandson and show him lots of photos of our family and activities etc. He tries to swipe the photos on my mobile. He also is very relaxed when we play music from his younger days.
This used to drive me mad with Mum and then when she didn't respond people would look to me to answer for her, when she just needed the time to process. At times, going to appts she did ask me to speak for her because she hated keeping people waiting & knew that they would then start to talk down to her. As things progressed we has to simplify questions to get an answer and sometimes the answers were wrong but if it seemed wrong I checked and we usually got there, it definitely wasn't lack of comprehension, it was inability to find the right words, & then later to talk very well but Mum was with it until she died very definitely.
I do try to make an effort and speak to Nela as I always have... it kills me to know that she is in there because her memory is, somewhat intact -she remembers everything from her younger years -we laugh because, every time we need to remember something, we turn to her for help- but sometimes she gets lost in more resent things... she ones told me that she felt like a horse in a stall, wanting to run free, but her body would respond 😢
Her eyes are also getting worse... we try to show her pictures, but she complains and tells us she doesn’t see well... so she spends her days watching TV (I guess it is easier to watch it from further)
Today she had to have a chest Xray, to check for fluids... fingers crossed.
As Chris' speech deteriorated I often responded to a frustrated look from him , when in company, and told the story I knew he wanted to tell [ we were married 50 years ! ]. Then I always referred it back to him and checked if it was right. This worked for us as he still felt included. When alone we could take time.
I also found that when young women fussed over him in a way I found patronising he loved it !
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