Thought it was too good to be true!

Well I don't know quite what to say, I was busy getting everything ready for Keith coming home on Monday evening when the phone rang, it was the nursing home, they were concerned about him, he wasn't responding to them, they couldn't get him into bed as he was rigid so they used a hoist, he had a temperature and was having spasms! Had I ever seen this before! No, I replied I'm coming straight over! I had such a shock when I saw him, he didn't know me and was making weird grunting noises, it was frightening, he looked so vulnerable 😔

The ambulance arrived and did all the usual checks and cut his clothes off him as his temperature was so high! They decided to take him to hospital and I followed in the car.

By the time we got there he was looking a little better. They did lots of scans, X-Ray's, blood tests and urine test, they couldn't find any infection or anything that may have caused this strange reaction, it was a mystery!

They decided he needed to stay in overnight and put a catheter on him, after several hours of trying to explain his condition, which surprise, surprise they had never heard of, I returned home in the early hours, shattered and worried to death!

I've been to see him today and apparently he had pulled the catheter out (ouch!) during the night, pulled at his wrist band till it snapped and pulled out the drip feeders! He can't seem to stand anything unusual on his body and won't give in till he's got rid of them!

Because he hasn't had a wee all day they decided he would have to have another catheter in as his bladder was full and stay in another night. So I still haven't got him home, am worried to death and don't feel as though I've had a break! This bloody awful PSP is the absolute pits, I hate it so much for destroying him bit by bit, he looked so I'll when I first got to the nursing home and all I can do is cry, sorry for going on, I'm just so upset 😢 xx

39 Replies

  • Oh, Pat, how terrible. It sounds like a pure nightmare. I can only imagine how shocked and distressed you must be. Poor Keith! Poor you! I wish I could do more than send virtual hugs - but all of those that I have are on their way to you. Hang on, dearie; try to rest and hope for a better day tomorrow. Love and peace, Ec

  • EC said it so well. Virtual hugs and prayers to you and Keith.

  • You probably don't feel it, but you're already so strong. Crying is a totally normal and proportionate response to having a horrible fright. Hope Keith gets over this blip and that you get some rest and respite. Big virtual hugs xxx

  • Oh Pat how horrendous. And in the middle of your break?! So SO not fair. I hope you get some rest and he is better in the morning. More hugs coming at you.

  • What a nightmare,and a rotten end to your break, hope Keith soon recovers soon

    your right as illnesses go, and there aren't any good ones, PSP is the pits!

    Sending you a hug

    Debbie x

  • Oh I am so sorry, this is heart-breaking - when he is in the hospital, it would be a good idea to let him wear an adult diaper (I always called them "briefs" in front of my dad) - that may not feel too intrusive - it could be used at home too - it's much more work than a catheter, though catheters can induce infections - btw it's less intrusive to use an external catheter than an internal one - but make sure it's a silicon one, the latex one can cause a nasty rash - and make sure it's not stuck on too tight - some nurses tape it on too tight and it can cause distress to the patient

  • Ahhhh! Taped on, that sounds awful. C's are self adhesive. I do joke when the occasional one slips off and tell him I'm going to use super glue or tape but I'd never tape it on really.


  • I sometimes have to use tape under the convene, it helps it to stay on if there is retraction. X

  • Hi NannaB - that's a good approach - but I've seen lazy nurses do this - just so they don't have to be called in, in case of a leak

  • Well B's cath is still in and doing quite well.... he gets 1/2 c of pure cranberry juice per in 2 cups water per day with all sort of other things specific to his catheterization,,,still learning as I go since no one is helping us...but again so far no UTI! or peepee on the bathroom floor...that is real nice !


  • Oh how worrying for you. I hope they are able to get to bottom of why his temperature soared and his behaviour has changed. Bless him sounds awful. Big hugs to you both and hope today is more positive x

  • Such a trauma Pat, what a rotten end to your so called break. I do hope that Keith soon gets over this blip, it's so hard when the medical staff have never heard of PSP and don't really understand its implications. I totally understand how very upset you feel and I hope you feel better having got things off your chest to us folk here who would do exactly the same. Try to keep strong but a good cry can work wonders so cry away.

    Wish there was something I could do but I know that's impossible.

    Take care now Pat, big hugs

    Kate xxxx

  • Awe pat I feel your pain, here's the biggest hug for you! You must have been and still be so scared! What a truly horrible fright! How is Keith today? Please keep us posted, I'll be thinking of you both whilst saying a lil prayer! 🙏 x

  • Thinking of you so much,both of you.Hope things improve today,dont know how we all carry on but we find an amazing inner strengh xx

  • You have perfectly described Colin's "neurological blip", as the GP called it. It is very scary isn't it? The first time it happened it lasted 24 hours and I thought I'd lose him. The last time it happened (5 th time) it lasted from Thursday night until Saturday lunchtime 3 weeks ago. The GP thought they are caused by the temperature spiking . He said like babies, C's brain can no longer regulate his temperature. I don't call the GP when it happens now. I give him paracetamol through his PEG, put a fan on him and use cold compresses. During an episode his temperature goes up and down. I also give plenty of fluid and eventually he does pee. The latest episode changed slightly in that he was breathing erratically, gasping for a while and then not breathing for a few seconds (which seemed like many minutes) and then gasping again. This went on for several hours and then Saturday lunchtime, as if someone had clicked a switch, he opened his eyes and raised his hand and was back to "normal". I was very concerned as I have sat with several old folk breathing like this at the end of their life. I don't ring the GP but do notify the hospice of what is happening. C doesn't want to die in hospital and the first time it happened the GP said they wouldn't be able to do anything I can't do, so he is best left at home. He prescribed lorazepam to calm him down during an episode. The GP did say that one day he may not come back from an episode but I'll worry about that when the time comes.

    Since the last one we have been out and about several times and life is as normal as it was before so I do hope yours gets back to how it was very soon.

    It is an awful condition as you say Pat and I hope Keith doesn't have any more episodes but you will know what to expect if he does. I hope he is home soon as I'm sure he will feel better with you nearby and in familiar surroundings.

    Sending you a great big hug.


  • Hi (This is Kevin - reading posts with Liz)

    I was going to say 'Check for viral meningitis' Exactly the same symptoms...

    I was reading this thread with quite a bit of anxiety until I got to your explanation. It sounds spot on.

    Big thanks we are forewarned!


    (and Liz xx)

  • Everyone is different Kevin. Let's hope Liz doesn't get this symptom.


  • Pat , you need to keep this post in your files as NannaB recountsher experiences... This may be what Keith is going through. I think Tim, or Ketchupman also experienced this with their mates....


  • i hope they are able to sort him out, it sounds as though he may have a starting an infection (raised temperature, going rigid, sweats etc), have they put him on antibiotics?

    Also unfortunately some later stage symptoms of many neurological conditions is the inability of the brain to control temperature I hope this is not the stage for Keith.

    I hope he can relieve himself without catheter but it may be required.

    Best wishes for good news and his safe return home. Tim

  • Oh Patriciapmr! How terrible for both you and Keith. PSP really does tear you live apart doesn't ? NannaB's post is very helpful. Let us hope that K pulls through and is back to his old self.

    Sending hugs and prayers.X

  • Oh Pat, how awful for you both, When hubby had a similar experience, they took him to hospital and found him to be very dehydrated, he wasn't able to swallow fluids, not even thickened ones very well, that is when we decided to have the peg fitted. it is very frightening to see our loved ones in such distress, I'm thinking of you both, sending love and hugs xx

  • How awful, Pat. I am left feeling helpless. How lucky to have nannaB with so much experience.

    Hope it is sorted quickly and let us know.

    love and hugs,

    Jean x

  • Pat I am so sorry this has happened at the end of your rest bite. I hope Keith gets well soon. NannaB described what she went through with Colin, sounds the same, I was thinking at the beginning it cold be a urine infection? Pat stay strong, you are strong these things are sent to try us and this PSP really tries us!!!!!! I wish I could come around and give you a big hug and have a cup of tea with you sending you a massive huge xxxxx🌹🌹🌹🌹

  • Dear Pat.. i feel so sorry for you and for your husband. Imaging exactly what you are going through.. my dad once went to hospital for kidney operation while psp exists. At night he took off the internal catheter and the canula and he was hitting his head by his hand.. i felt the same that he is refusing anything abnormal through his body.. it was so difficult to see him in that situation while i am helpless dont know what to do..get well soon and take care.. remember we are here all together.. big hug and kisses.. xxx

  • Hi Pat, I have read, ( don't know where, perhaps here) that PSP patients don't have any normal infection markers. S has had two UTI's, both times rushed into hospital, because of pain spasms, although he was saying no pain. Last time, his obs were showing a problem, but they never found any infection, but thankfully treated him for one anyway. It is so frightening, isn't it, when you have having to second guess what's wrong, because they can't tell you. One visit to hospital, we didn't come across one person that had heard of PSP, the second, a couple had, plus the odd one, that have had the pleasure of S's company before!

    As to you feeling as if you haven't had a break, think what state you would be in now, if you hadn't had that lovely respite! It's not funny, going through what you are now, but on an empty tank. This is why these breaks are so important, to recharge the battery, to cope with PSP wielding it's increasingly heavy hand!

    Sending very large hug, hope Keith is starting to feel better and is home soon.

    Lots of love


  • So true Heady..

  • Such a terrible thing to live through Pat..Hope Keith gets well soon and such awfulness never recurs.Much love and prayers across the miles xxx

  • So sorry to hear the details of what happened to Keith. I can only imagine what you went through. I hope he gets better soon, at home where he belongs. All the best over the next couple of days.

  • So sorry to read yiur post. Do hope everything settles soon. PSP has the ability to throw these horrible curved balls at us. Take care sending a big hug xxx

  • I think the pulling off medical devices must be a common trait of PSP. My wife could not stand having things plugged into her. She would constantly tug on her IV and loathed having the oximeter on her finger. I know during one hospital stay, she must of pulled it off at least a dozen times.

    Prayers to you both.


  • I hope by the time you read this, things have improved. It sounded totally terrible and frightening for both of you. I wish there was something I could do. Sending you a big warm virtual hug is the best next thing.



  • And this too, shall pass. Praying for better days (:

  • Sending lots of hugs to you pat at this very difficult time xx

  • I'm so sorry. Today I'm managing but over the weekend it was a nighmare. I am thinking about you and will say some prayers. PSP is the worst, the absolute worst!


  • I'm sorry to hear about K .This dam disease just keeps on giving and giving.Do hope you have calmer waters ahead.

    Dee in BC

  • Dear Patricia and Keith, my prayers are with you both. I pray for healing and that you will find strengh and peace in this stressful time. It is out of your hands now. Hugs.

  • We have not had this experience, but several others have with the spiking fever and then all of a sudden ok. I cannot remember who it was but it doesn't seem that long ago so you might look it up or ask about this ....I do know it's probably harder on you to go through this than to have him back home. I am sorry to both you and Keith This horrible disease IS NOT easy I haven't slept well in I don't know how many please remember you and Keith are not alone....peace be with you, Pat...


  • So disheartening to see what the caregivers have to go through - it sure is exhausting

    but remember most of us are going or gone through this - sometimes alone with no information and help and others doing their best to ease the burden - so I pray Our Lord will give you strength and courage along this journey. Take care of yourself. Been there and its now 5 months since my husband journeyed to the Lord and now am trying to get my life together - it sure is hard so remember we are with you in our thoughts and prayers.

  • hi

    rog gets this quite frequently , very high temp and completely knocked off (technical term!) it is due to the brain stem being damaged and is part of the illness he will settle but it will happen again, hopefully catheter will be tolerated as it has made our life much easier

    fond regards

    keep smiling


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