Hi, with all I have read and found out about, I was under the impression that dementia was not a part of PSP, unless it was diagnosed with dementia. So Colin is continually repeating himself, it’s like he gets something in his head and says it over and over again, no matter what I say to answer him. He has also started picking up words from the telly, and adding them to another word like “trump painful” “ trade deals hurt”, Colin watches the news a lot, and what he is telling me is his feet hurt or his shoulders are painful. But he just keeps repeating the things that come into his head. As far as I can tell there is no UTI or infections. He is also telling me he is ill and won’t last long, he has a lot of anxiety and says he feels stressed, but can’t tell me why.
Anyone else had this experience.
Love and hugs to all on this wet and windy afternoon in Surrey.
Helen xx
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Helen119
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Larry is sliding into dementia slowly. He has delusions. He believes them. No matter what I say they are real for him. I don’t know when delusions become dementia.
I had read the dementia was from inactivity. Exercising would help if he could exercise. That period is now over.
Dad often seemed to use things he saw or heard on TV and incorporated it into his version of reality at times. For him this happened in the latter stage and he had CBD.
Helen, I never knew with hubby (CBD, though) just what was dementia and what was "cognitive impairment" in the speech centre.. Hubby was so frustrated by loss of language - anything could come out and I was constantly trying to guess the real story. Exhausting!
Anne, My hubby sounds like yours. He remembers things that he says happened to him when in reality it didn’t. For example; he had a bad reaction to some aftershave lotion and his face flaked, pealed and he was very uncomfortable until I found a cream to counteract the problem. He blamed the person who had recently given him a pedicure and massaged his legs with warm rocks. I was there for the appointment the entire time. I sat next to him and watched him fall asleep. The manicurist never went near his face! Very exhausting indeed. Another example is he told a doctor that he had fallen out of bed and he said that I got mad at him for falling. Again, that never happened! He’s convinced that he’s right and I don’t argue. I try to set the record straight but oh my gosh, I don’t like sounding like a broken record 😱
You might review his medication and see if this could be a side effect from something he might be taking. Have you introduced anything new to his diet or meds? Just a thought 🤷♀️
My husband got so he couldn't find or say the words he wanted so he sometimes repeated what I or someone else said. I didn't consider it dementia, just the inability to verbalize what he wanted to. The less he has been able to talk, the more likely he is to repeat what we say.
Your right not dementia, but exactly what your saying, finding it hard to find the words he wants so picking up on other things. Thank you thats exactly where we are xx
That's how it seemed to me. I always thought he knew what he wanted to say but the words evaded him. He parroted back my last word at times. We had to find ways round. It was often distressing.
My Mum is beginning to do this, she will repeat what I said back to me and them look confused as if to say "why was I saying that?". She also says things that I have to "sense check" as they don't just seem right and generally after some probing we get to something closer to what she wanted to say - she does get frustrated and sometimes gives up as she knows what she wants to say but just can't find the words. One of the more amusing aspects (we have to search for these bits don't we?) of this is she gets all the carers names wrong but not just slightly, her favourite ones at the moment are Raquel and Priscilla previously it was Dorothy, that changed to Jolly Dolly. They are not even close to the real names !!!
I know it's really hard. I am very lucky in that though I spend every afternoon with Mum, I get time away and that little bit of distance so helps. I know she would love me to be there more but I can give her better quality time by having some me time. It must be so hard and you must get so ground down by it when it is 24/7.
Hi Helen119, it must be so frustrating for them when they know what they want to say but the words just won't come out. In turn that must exacerbate their anxiety, their world must be very frightening. I had the same thing with Rod except he became very delusional and couldn't separate the fact that the news was not related to us and some of the news items provoked such anxiety with him that he would bang on the window shouting out for the police and he would then get angry with me when I wouldn't call them. I constantly had to ring my daughter and ask her to reassure him that she was ok when he was convinced she was involved in a war zone or worse still that our little granddaughter was in grave danger. It became so exhausting that I resorted to leaving the TV off.
His word finding often related to the last thing he had seen or heard. So whilst eating some strawberries he repeated the word 'strawberry' over and over again and got angrier by the second, I eventually worked out he needed help to go to the toilet and that's how life became. I always thought he had an overlap of PSP and Lewbody dementia but when I mentioned it at a clinic visit I was told that even if it were the case the treatment (or lack of it) would be no different. He also hallucinated from very early on in the illness, not drug related, but that was manageable as he was not frightened by them, but I did question my sanity when I led 'an elephant' out of the room at his insistence. He also told me often, always on waking, that he was dying and I should dial 999 otherwise it would be too late. Of course, I never did, but those episodes would reduce me to a complete wreck. These are just a few examples of life on a daily basis and in reality just the tip of the iceberg,
Rod is at peace now and I am trying to pick up the pieces, wondering how the heck I got through and where I go from here, but I guess survival mode just kicks in and we really are so much stronger than we think. I am also in Surrey and pleased to wake up to a better day than yesterday. Best wishes, Helen. HilsandR
Hi I can identify with so much of this, I was up this morning at 2 as Colin thought he was in water and drowning, turned to the tv and there was the ocean on the screen, the other night it was a bomb under the bed, that as awful because he even told me men had come in and put it there.
He is associating words from the screen, I also wondered if it was LBD as Colin was initially diagnosed with that before PSP.
Hope you get your life back in order soon and add some normality to it, what ever that is, and nice to know your in Surrey, I’m near Staines whee are you.
Interestingly, our GP mentioned Lewy Body dementia in the referral letter to the neurologist but the hummingbird image on the MRI scan pointed more to the likelihood of PSP, or 'probable' PSP as it was always referred to after diagnosis. Coping with the delusional stuff is so hard, especially when you are exhausted but I guess it must be horrendous for them trying to cope with things that are so real to them. I found talking to R really calmly through these episodes would mostly help but there were occasions when he wasn't having any of it and then the anger would set in. During the summer months I would walk away from it and go into the garden until he calmed down on his own and where I could take a few deep breaths - the winter months were always more difficult. I actually had someone ring the doorbell on one occasion when he had been banging on the window shouting for help. Such a hideous disease. I am in New Malden, 10 minutes from Kingston, which I am sure you know and have no doubt shopped there. I hope you get a better night tonight. HilsandRx
Thank you, I’m hoping for a better night as well, yes been to Kingston loads but obviously not recently as can’t go anywhere, I’m sole carer and can’t leave Colin for more than 10 mins to quickly take the dog round the block.
Thanks for replying least o know I’m not the only one coping with this now.
Being sole carer is darned tough, Helen. I was fortunate enough to have help from either my son or daughter who would sit with Rod so that I could get out from time to time. He would not be left with anyone other than them and to be honest I am not sure who else would have been able to cope with some of his behaviour. Entirely your call but if you ever feel the need to have a one to one chat either by phone or email when you feel you are sinking I am more than happy to private message you my email address and telephone number. Your husband's journey sounds the same as R's so I have a lot of empathy and a very willing ear and always happy to chat, so just shout if you think it would help. No worries if you prefer not to as I know it's sometimes difficult to talk on the phone, especially if in earshot of our loved ones. Hils.x
Wow thank you so much that is very kind of you, I will keep you in mind next time I about to put my head on the oven, thank you again for the chat today it’s been nice hearing your experience as it’s so similar to what I am going through at the moment.
I thought about the oven but my creaky knees wouldn't allow me to get down there - I've private messaged you for that time if/and when you need a distraction. Take care of you both. Hils
If you want to watch a dark comedy “Dead In A Week” on Netflix; includes a hilarious oven scene. Maybe my mind is just warped from understanding how to walk an elephant out of a room. Got to tell you I laughed out loud when I read that.
You know, Sewbears, the one thing that kept me going throughout the seemingly endless struggle, was keeping my sense of humour. I do still question my own sanity when I led that elephant out of the room but the worst part about it was I remember standing there for a minute trying to work out where it's trunk might be so I could take it in my hand and encourage it to follow me. You have to remember, R could see the elephant, I couldn't, lol. Not only was I R's carer but I considered myself a zookeeper as well. We had a resident boa constrictor on our patio, a gorilla, crocodiles, the elephant of course and spiders galore. None of these ever frightened him or made him agitated, just the one occasion with 'Nellie'. He also saw regularly a little girl playing at the bottom of the garden and could describe exactly what she was wearing. I will watch 'dead in a week' on Netflix - thanks for the recommendation. HilsandR
HilsandR-Zookeeper (ha!), I often wonder who’s more confused, my husband with CBD trying to express certain words, or me as his interpreter, performing charades to figure out what is being said and what it means. The elephant eviction is probably the funniest one I’ve heard so far but in reality it isn’t really funny at all. Thank goodness we have this forum to keep our sanity in check. I appreciate your sense of humor. Not everyone can handle situations like this as well as you have. R is lucky to have you, especially to ring in the elephant circus, spiders and gorilla’s, oh my! Thank you,
Rod has been gone 5 months now and there's no escaping from the sadness and emptiness I feel. However, I feel that a bit of light humour to ease the darkest times isn't going to hurt and in fact can take the focus off what is happening even if just for a moment. Being serious all the time can eat away at you. Trying to find a bit of humour in the most difficult situations isn't a crime. I had 46 years of laughter with my lovely man and even during his final weeks that humour surfaced every now and then, and those are the moments I will remember and treasure, rather than focusing on the toll the illness took on us both. Sending best wishes to you and your husband, try to keep smiling and remember it's ok to have good chuckle every now and then. Hils.x
We were so blessed, Jean, to have had such happy marriages and I will be forever thankful for that. Whatever PSP flung at us it could never take away what we had, eh?
HilsandR, my last post was at 2AM and I was blurry eyed. I am very sorry to hear that your love Rod passed. I kind of had a feeling about that last night, but not until after I had already sent the post. I went back and read some of your earlier posts/replies. I was too tired to edit or shout out a new thought. I’m glad that you told me about Rod. I cannot imagine how difficult this is, was, and continues to be for you.
Hubby and I will be celebrating our 30th wedding anniversary this summer and we also have a fun and loving relationship. I hope that I can keep it amazing for as long as possible.
I want to be able to follow in your footsteps and find the humor, even during difficult times. I admire your wisdom and I like how you express yourself.
Thank you for continuing to care and for being you. Please accept my deepest sympathies for your loss of Rod. ❤️
Hi SewBears, thank you for such a lovely post, I feel your warmth. I realised that you weren't aware of Rod's passing, I didn't actually make an announcement on this site when he died, I mentioned it when replying to others when I thought that my experience with PSP may help, so the news never reached the wider reader.
To be honest, in the earlier part of Rod's illness I was not a frequent visitor to the site, I found reading what may be ahead for us just too much on top of what I was already dealing with and time, well there was never much time and after getting him to bed in the evening I would try to have an hour to wind down before I went to bed, and I would always try to find some comedy to watch, I just needed some relief from the pressure of being weighed down by the stress, worry and sheer exhaustion. I love going back over some of the old sitcoms, some of which were hilarious, a bit like our own lives in many ways.
Some months before Rod died he broke down telling me he didn't want to leave me alone. In that moment I promised him I would be OK (knowing I would be completely devastated) and like my wedding vows, in sickness and in health, I will keep that promise and as hard as it is I'm trying to move forward embracing the joys that life still has to offer. He left us a legacy of laughter and love and that's how it's gonna be going forward. He is never out of my head and I doubt he ever will be. I will hold my love for him and cherish what we had until my dying day; there will be tears by the bucketload and there will also be laughter, plenty of it.
Embrace every day, SewBears, and despite the challenges keep enjoying the wonderful relationship that you have with your man - 30 years this year - a testament of your devotion to each other. Humour got me through/is still getting me through and I hope it will be the same for you as the journey becomes harder.
It's been lovely sharing a lighthearted post with you - thank you.
Welcome to my world. PSP and dementia will not affect any two people the same. Expect the repetition, confusion, short term memory loss and more surprises. It's a serious subject, but I've learned to laugh at myself. That is... when I remember to.
My hubby has very definite cognitive changes born out by Neuro psychology testing last year. Massive frontal changes, agitated ++ inability to plan and organise, impulsive +++ paranoid and aggressive. Nightmares He started Quetiapine ( antiPsychotic med) in December this has calmed his agitation a little and he has reintroduced courtesy into his vocabulary so wonderful when
he occasionally says please or thank you, but no other positive changes sadly.
These cognitive/psychological changes are so cruel and so challenging to live with😖
You are both going through a tough time Tippy but I know you are a strong and resourceful lady. Ben never showed any aggression during his fight, that must be very difficult to deal with, I feel for you as you know it's the disease and not the man.
I, like Jean know that Ben was fully aware of all that was going on but just couldn't voice his thoughts, couldn't find the words or if he could just unable to express them. Like Jean I did most of the talking on his behalf and I know he was thankful for that as he found it such a struggle. It's such a difficult thing to loose verbal communication with your loved one but somehow you do manage communicating in a different way.
Do you have a Neurology appt approaching?? I wonder if there is any further medication - or SALT intervention which could help. The frustration for you both must be huge.
No we don’t see the neurologist anymore as Colin is bedridden now and cannot leave the house except by ambulance, in fact we don’t see anybody anymore unless I ask them to come out to us.
Oh Helen that is so very hard - so sorry to hear that. We still get out - to carefully chosen places!!! Could you ask the GP to refer to the community SALT they would assess and hopefully give you both some strategies.
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