Friday night special!!!

Yes, spent a fabulous evening at Bristols hot spot for entertainment. Southmead Hospital! The girl at Costa even told me to "enjoy my evening"!

Tried to wake S up in the morning to give him his breakfast before the carers and DN arrived. He wouldn't wake. The carers again tried, but he still didn't respond. He had a bit a temperature. So they gave him a bed bath, changed his wet clothes and bedding. Still wouldn't wake. The DN arrived, to give him his enema, obviously that didn't happen, but she took his temperature and said she would go back and report this to the doctor. An assistant/paramedic came out. All his obs were fine except his temperature. Still no sign of his waking. The doctor phoned, said he could take him into hospital, but suggested we wait a few hours. Eventually, late afternoon, no real sign of any improvement and allowing that he had had nothing to drink since tea time the previous day, apart from a couple of spoonfuls of water, that I had managed to get down him. Called to get the doctor to come and see him. He, quite obviously, had a Christmas party to go to, or something, just called the ambulance, without bothering to come and see him.

So we spent 5 hours in a very crafty corridor, windows wide open. Did get his temperature down, almost too low! No doctor, no fluids, no nothing. Finally had to do my Oscar performance, you know the one, I am his main Carer, I have been up for hours, need my rest, blah, blah blah! Well it worked, Doctor came, examined him, couldn't find anything. Said they would have to run a load of tests and I was to go home. Leaving S lying in this corridor. As by then it was 1.00am, I had no choice. Demanded to hand over to the sister in charge. Extremely lovely nurse, old school, explained about the joys of PSP and how he would almost certainly, get out of his bed and fall, if left alone. Which, I took she didn't want to happen on such a busy night. Then said good night and left her to it. Fully confident she would make sure he got full attention, which he wouldn't receive, if I hung around.

He is home now, they couldn't find any reason for the high temperature, or the pain in his stomach. Given him some pills, which I have to get into him an hour before food. Not sure how I will manage that, as soon as he has finished one meal, the next one is due.

Still that, for the next week, will be the nursing home's problem.

This really has to stop, I just can't go on any longer. I am going to try and see the manager of the home and talk about a permanent place. S needs 24/7 medical attention, I can't provide that. I am not sure how much he even knows what is going on anymore. The lights are on, but nobody is at home, beginning to look as if nobody as been around for a while.

I had hope to get to the new year, but if they have space now, I will have to seriously consider it.

The good news is, I am off all next week, nothing much to do, except sort the house out, cook a load of meals, get Christmas sorted, bought, wrapped and what ever we spend hours doing. S's daughter and family arrive on Sunday, five of them. Think I ought to book a double place at the nursing home!

The really, really good news, just to make you all jealous, I went to a party last night! You know, doing what normal grown up folks do. Spent a very pleasant couple of hours, having a laugh with a widow, while we swapped gruesome stories.

Sorry to drivel on, but a whole weekend of not being on here, I had a lot to say!

Sending big group hugs.

Lots of love


38 Replies

  • Oh Heady ! Such a typical PSP time !!!

    Envy the party.

    Enjoy next week. See what comes next.

    Stop the world, I want to get off !!!

    Love from a tired Jean xx

  • Heady my heart goes out to you, PSP just keeps throwing stuff your way, and all of our way, so much hate for this illness. Glad that S is home, so much better than the hospital. Have a marvellous week of, have a rest and sleep a lot. Sending you and jean a massive hug. Jean this tiredness is horrible, when you get chave to sleep, all the s***t going on in your head, makes it impossible to sleep, I also envy the party xxxx

  • Tired all the time! Now on antibiotics. When it's all over I'll be sick but can't be right now.

  • hi heady well you have done your best with s it sounds like the nursing home is the next best thing for s unless he rallies around it takes me that long to some nights I have been up until nearly midnight which is no good for my beauty sleep ha--- no1 no good me being a carer mate ha --- no2 anyway mate I hate to say this but I think you would be doing the right thing I might not remember it in the morning s strike while the iron is hot mate i personaly did not like the respite joint where I stayed but it gave my wife a break I will be going in there again in january that will be nice wont it but I know I have to go or else my marriage would suffer after 60 years in march that's not very nice is it matey ah well I think I have said all I wanted to I hope you can understand this mated see yer take care peter jones q.l.d.. australia psp bloke staff were good but the inmates were pretty grim because I had to go into high care bothered me don't get me wrong about the respite the food was good and the beds were clean

  • Hello Peter Jones great to hear from you. Give my love to your lovely wife, have a merry Christmas and hopefully a more pleasant time in January's respite. Take care, maddy xx

  • I AGREE, `M



  • thank Maddie the same to you and wishing yoiu all you wish yoursellf mate see yer peter jones q.l/.d. australia

  • Hi Peter, good to read your post and see it from a sufferers point of view.

    AND 60yrs in March, wow that is amazing, we are a few years past our 40 yrs so have a bit of catching up!

    Merry Christmas to you and your dear wife.

    Live Kate xxx

  • Peter, were in Tasmania at the moment and today is our 47th wedding anniversary. We're out here for 2 months to be near our younger son who works in Hobart. The journey sent Jon delusional so it was no picnic and will, as I thought when I planned it, be our last time to fly this far. Jon is confident we'll reach our 50th, so I have to believe him.

  • hi richanne we;ll l hear we are bsck agsin as promised mrs I had an ujrgent call ftom the great one to go down the shop which I love doing I don't think ; well are you having a good holiday with your son ?I hope so especially if you came from the uk its one hell of n jojurney matey isn't it even if you strong and fit ; well you two have a great time mates by the way matey how is JON

    hope ok I hope perhaps the journey was to much for him it's a shame but I hope he has come around now if not you enjoy yourself no good wasting your holiday is it

  • Love to you Peter. You are a good man. Good to hear from you again. Maybe it will be a bit better in respite in January as they will know you and you will know them? I do hope so our Aussie friend! Fingers crossed for you.

    Marie x

  • hi marie 14 hows it going mate ok I hoop sorry for delay you know it is I hope they all rally AROUND TO MSAKER more than here before in respite I mean mate and I proMse next time I will change the size of print o have a very happy xmas and a brilliant new yar mate SEE YER PETER JONES Q.L.D. AUJSTRALIA


  • Peter good to hear from you. Don't worry about respite. First thing enjoy your Christmas and New Year. A step at a time eh?They will know you this time and you will know them. That will make a difference for the good. How long are you in respite for?

    Happy Christmas and New Year my Aussie pal. Stop worrying!

    Don't worry about the typing. I have to go over mine everytime and I still make mistakes! Will you be able to send posts when you are in respite?

    Marie x

  • Yes, Peter. Chris also goes to respite to make sure I have a break. Its not great but its the best way to manage things.

    Its hard for everyone, isn't it ?

    Wishing you and your wife a happy Christmas, from Jean and Chris xx

  • hi jan and chrids thanks for your em mate regards tio chris a very happy Christmas to both o you take care mates peter

    jones q.l.d. australisa psp bloke

  • Oh Heady, so happy about the party and so sorry about the hospital visit. I think it is a good thing you are thinking of permanent placement. You have been working so very hard you must be exhausted. Do not let yourself feel guilty. Your visits to S will be calm and loving because that will now be your main concern. Did they explain why he wouldn't wake? Take care of yourself and don't overdo your holiday work.

  • Dear Heady, this whole PSP thing is a complete nightmare isn't it? Keith has just spent 6 weeks confined to his room at the nursing home because he had a C-Diff infection which we think he caught when he was taken on that delightful trip to hospital! (Remember the three catheters being pulled out?) Today he was actually being walked out of his room which was so nice to see, but I'm still not convinced that all the staff understand the complexities of PSP and I worry so much! I don't know which is worse, being completely cream crackered looking after him at home or worrying that he's not being looked after properly in the nursing home!

    Try and enjoy your week off even if it's only catching up on some sleep, I'm thinking of you Heady, it really is a difficult decision to make but there comes a point when it becomes impossible no matter how much you love them and you have to realise that you can't do it 24/7 on your own,

    Sending you a big hug....Pat xx

  • I almost died from C-diff! It was a close call. I'm glad he's doing a bit better.

    Staff don't understand the complexities of the PSP, awful, awful, awful.


  • excuse my ignorance cuttercast but whats the c- diffi catheter problems mate I had one fitted 3 times it was bloody painfull in the end excused the pun mate peter jones q.l.d. Australia psp sufferer

  • Heady, your bright energy inspires me. Wishing you whatever you desire, ec

  • Heady so sorry to hear of S bout with fever and hospital....and so sorry for you to have endure and consider the hard needs of your husband. Any fluctuation and B tires long and hard....sleeping or at least just not being able to do what usually can do is quite evident. So a fever really knocks it out of our PSPers! I give you all the support I can as you go on this next week.....I have yet to shop for christmas even on line. I am a real scrooge when it comes to holiday crap....give em all 5 bucks and a kiss! Better yet give em a big box of their stuff that still is collecting dust in my closet....hahah

    S I hope you are feeling better. Keep powering through PSP as much as possible, stay strong man; there's alot of love coming your way....

    Love you both


  • Dear Heady, if there is a permanent place and you like the nursing home, I should go for it. You should not feel guilty as you have done your absolute best for S and you still will be doing that. The difference will be that someone else is sharing the responsibility with you.

    We found that the nurses and hospice nurses (who continued to have an overview of his care) were excellent and very experienced. D communicated that he did not want to go to hospital or have IV antibiotics etc in case of infection. In fact that did not become a problem, but we did have instances where he wouldn't wake some days, particularly after a tiring day with an outing or visitors. I think it was just the over-worked brain needing a complete rest for a bit.

    I hope you have a restful few days of respite.



  • Sorry to hear your story, hope you enjoy your week of respite and hope S stays out of hospital.

    You have absolutely done your best for your husband, if he needs 24/7 nursing you can't do that alone, as much as it must be a heartbreaking decision maybe it's time for the home, and you'll be a better person when you visit or take him out

    Lots of love

    Debbie xxx

  • Blimey Hardy, what a saga but pleased that you got a bit of light relief at the party, hope your conversation with the lady wasn't too irreverent!!

    On the serious side, it looks like you have finally made the big decision about S going into a care home, hope that you soon get offered a place. You have done a great job caring for him until it is no longer a viable option for you both. I think the Friday night episode has highlighted that the stuff you are dealing with all on your own is impossible to maintain for you or anybody else Heady.

    Good luck with the Christmas shopping, I have done most online this year and gave it sent gift wrapped straight to the recipients as just can't get out to shop.

    How do you feel about the visitors coming are they here for Christmas or just a flying visit?

    Take care Heady and try to enjoy your week of respite ( if you can call Christmas prep that!)

    Love and a big hug

    Kate xxx

  • Heady I think you are well beyond the point I got to before M moved into a nursing home. You have at least the respite which was something we could not find, but even frequent respite cannot allow you to recover.

    I hope you have a good nursing home in mind, you need to put S on their inevitable waiting list. You also need to do it soon not only for your health but also for S safety and care which is (honesty) getting beyond what can be provided at home without a live in carer, which is something I could not contemplate as it would have reduced my privacy too far.

    Enjoy your time out and I hope S stomach and infection problems are sorted in the home. Tim

  • Heady great to listen to your events, I laugh and cry reading it. We are not real people only carers but still have to prepare everything for the "real world". Glad you had a good night out but you do know normal people have many many nights out ha ha. Big hugs xxx

  • Awe heady I'm so sorry, another load of shit and grief you didn't need!!

    If it's time for a nursing home then so be it, you gotta look after yourself too!!

    Psp is totally hateful and I'm sitting here with my heart breaking for you both!

    Hugs darling and lots of love and more hugs x

  • Heady what a nightmare? Poor you and poor husband too. If you can get him into a nice Nursing Home where they actually know what they are doing that would be good.

    However you will still wonder what is happening to him and are they doing the right things!

    I rang the doctor today as yesterday I realised my husband hadn't has his patch on to relieve his drooling. He was so wet! They told me the night staff do that! Not true, as I have been there when they have done it in the past. The person in charge refused to do it! Told me the night staff were due on soon and they would see to it.

    I asked for a new convene to be put on as his other one had leaked over the bed. He was told it would soon be time for him to be prepared for bed! So God love him he said:"alright". He was left in a wet bed and we had to leave earlier than we would have as otherwise he would have been left that way longer as the carer came in and asked had we not gone yet!

    Now this morning I rang the doctor to find out what is going on and he told me he had been instructed to increase his Sinemet! The Sinemet that's not working! We only saw the consultant last week and he never mentioned that. In fact he mentioned getting the Palliative Care team in and told my husband he was likely to have another dose of pneumonia and the outcome was likely to be different!

    What do you do Heady? Keep your beady eye on them in the Nursing Home! I can't do that because I don't drive so am depending on others to take me to see him. They know this and when I will be visiting and even then don't bother!

    Marie x

  • Hello, Heady. For me the most significant thing you say is " the lights on but no-one is home ".

    It sounds as if its the time to really look after yourself. You have cared for him so well and he would want you to care for yourself, I'm sure.

    Lots of love and a big hug, from Jean xx

  • And I am scrolling through the replies thinking how to word mine and Jean has done it for me. I doubt he can continue for much longer like this, so it seems to me irrelevant from his point of view where he is based. Time to look after yourself.

  • John has Parkkinsons and has always had periods like that can go a week with no response like a rag doll , then he switches back on

  • Big hugs heady xxx you're doing a fantastic job and glad you got to go to a well deserved party. Do what you got to do for both of your sakes, maybe after some respite you'll have a different perspective. I'm having a glass of wine for you both now ! Xx

  • Hi Heady, sounds like the "neurological blips" as our doctor called them. Totally unresponsive, high temperature. For the last 6 months Colin had an episode about every 4 weeks. They would last between 12 and 24 hours. I got used to them and didn't even call the GP after the first few as he said he couldn't do anything about it. Sorry you are going through this now. It's good you are off duty for a while but it sounds as if you are still going to be busy. Don't do too much that you don't have to.

    Take care.


  • Yes we don't know what is going on with the brain and any such episodes are a blip. You think it's the end but thn get used to it. . It's so disappointing when it does happen ,

  • We are in the middle of one at the moment . Dreadful drooling and thick mucus in throat . It's a bug like a FREEZE

  • Dear Heady

    I guess the Costa should have said oh what a night!!! What an awful time for both of you but thank you for sharing it sounds from you and Nannab that these high temps are all part of the PSP package forewarned is forearmed for those of us not quite there yet another PSP challenge but this one will not take by surprise now! !!!

    I am in serious need of respite currently and it strangely boosts me when I read of others in same situation stops me feeling like a total failure.

    I hope you have a few more normal evenings you have worked so very hard and given so much to your man. Perhaps as others suggest now is time to look after you get him settled as best you can. Take care if yourself


  • Heady, you are one in a million, there is something about PSP/CBD that makes one reach the brink of insanity one minute and somehow forget about it all the next, only to come back to reality. I am sorry to hear about S's short lived hospital stay without answers. Seems the further this goes the less answers we get.

    Happy you got out and are getting Christmas sorted, but by the looks of it you will be one busy bee...I have started my baking as well but everyone is eating all my cookies before Christmas arrives...

    I love your outlook on life Heady you are an inspiration to us all


  • Oh Heady,

    I see the future here for us. The Ghost of Christmas past is hovering.

    And, yesterday, Charles was terrific. Today, not. This rollercoaster is getting old.

    I'm still hesitating the hospital bed arrival. Plus, HOSPICE, seems to give him lots of drugs for pain, etc. He doesn't have PAIN. These drugs make him catatonic. I'm not giving them to him. I have them for down the road but right now he's still hanging in there, but not for long.

    If you need me, I'm here all next week to serve as a sounding board and will send virtual hugs and prayers. My Holiday prep is minimal but we did decorate.


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