Failed again!!!

Hi, S is in hospital AGAIN!!! Urine infection which caused his Catether to block. I have been trying all weekend, with the help of the rapid Response team, to keep him out of the bloody place, but to no avail, had to phone the team again at 5.00am this morning, they came at 6.00 and the ambulance was called! I am fed up of going to that place, it's not right,to know your way around a hospital. It's not right, to just take it in your stride, that your husband is in hospital! I think he is OK, his kidneys aren't happy, but have been reassured, this will improve, once they get fluids and antibiotics into him. Didn't help when doctor took me into a private room to have a "chat"! Just wanted to know if S had a DNR in place, when I said no, did I want him to have a chat with S!!! Can you imagine, you are sick, have PSP and the quack wants to talk about DNR's! Thought I had found a good doctor until then!!! Honestly, I promise, I was very good, very politely, said I didn't think it was a good time to discuss this with S!!! Are they really on the same planet as us, or are we on the wrong one?????

Least they actually asked the question about what care package I have in place, so have already decided that he will be in until at least Wednesday afternoon, so I can cancel my Carers. More importantly, relax, knowing I haven't got to bring him home tomorrow, feeling totally exhausted!

Just so you know, I am following my own advise, have cooked a decent meal, OK, I admit, opened a bottle of wine and I certainly don't intend to go to the hospital, until at the earliest, tomorrow lunch time!

Silly question, but when you telephone a care company to tell them not to come, because your husband is in hospital, what part do you think I might be getting wrong? They have just turned up to put S to bed!!!

Only another ordinary day in the life of PSP!!!

Lots of love


70 Replies

  • Oh heady hope S gets better, urine infections are not nice, George gets quite a few since having the catheter, last one was really bad, but did not have to go into hospital. The doctor at the hospital put him on antibiotics every day. Glad you cooked yourself a nice dinner, with a couple of glasses of wine. Hope S is better and home soon. Yvonne xxxx

  • Thanks Yvonne

  • Heady, so sorry to hear you are at that place again.

    I've just been thinking, I know UTI are common with PSP, I know not anything to do with PSP, but my dad used to get recurring UTI, old age and bad heart and diabetes, but they eventually prescribed him 1 daily antibiotic, and that cured them, would that not be a possibility for all the sufferes here

    Just a thought

    Yes I know what you mean about the hospital, I went so many times with my dad, the janitor who served the tea etc in a&e, said anytime I'm at the hospital visiting just pop into a&e and he'd make me a cuppa!

    Lots of love Debbe

  • Understand what you are saying, my brother in law had his spleen removed a few months ago, now has to live on a low dose everyday.

    Lots of love


  • So sorry Heady Hope S improves and you get him home again soon. Typical paperpushers! Can't get stuff sorted fast enough to get to carers. Hope your bottle of wine will run to another glass!

    Hugs and thinking of you. Jen

  • Unfortunately it had a hole in it, so lots went missing, honest, I don't know where!!!

    Lots of love


  • Hi Heady, so sorry S is in hospital again hope he is better soon. In the meantime, keep cooking those lovely dinners, enjoying the wine and recharging your batteries. Lots of love, Nanny857 xx

  • Thanks Nanny

  • Oh Heady, there is always something going on isn't there. I hope the infection clears soon but pleased you are making the most of your "free" time. Did you invite the carer in for a drink?

    Talking about the DNR is difficult but the doctor has to ask if there is one just in case resuscitation is needed to save a life. He was probably duty bound to ask if you wanted it discussed. We have to take the DNR certificate with us every time we go to the hospice and whenever C has gone to hospital by ambulance, the paramedics always ask if C has one and tell me to take it with me. If they don't have the certificate, they have said they have to resuscitate. When S gets home and clear of the UTI, I would bring the subject up. He can always indicate no, if he doesn't want to be resuscitated but if he goes to hospital again, you can give the doctor a definite answer.

    Enjoy your evening Heady. I'll have a drink with you.


  • Are we supposed to take the DNR with us every time D goes to the hospice? We haven't been doing that. I know the carers, sitters etc. need to know where it is at home but maybe we should take it with us every time we leave the house. Perhaps he should wear it round his neck or something to make sure it doesn't go missing!


  • They told me to take it to the hospice. We have a wheelchair ruck sack which stays on the chair so the DNR is now stored in the front pocket. I have written where it is on the front cover of the Everycare and Crossroads note folder in big letters. It's now in a plastic sleeve as it was getting very tatty and they won't accept photo copies.

    I forget it is there but saw it when we went to a pub for a meal with family yesterday. My strange thought was, oh good, I've got it if we have an accident on the way home....weird! They wouldn't know what to do with me though. Perhaps I'll get one!


  • I think there is some confusion here. One doc. at the hospice, told us that with my husbands age and condition, it was unlikely that they would resuscitate and that I would have no say in the matter. Then I'm told that an ambulance will not take B without a certificate being signed. HELP!!!

  • You don't have to have a DNR so if you haven't, paramedics can try resuscitation. If you have, that's when the paramedics must see it. If they don't see the DNR, they can still resuscitate even if against the patients wishes. They need signed evidence that resuscitation is not wanted.

    The first time C went into respite, he didn't have a DNR. We were asked if he had and when I said no, we were told they would probably try resuscitation if his heart stopped and there was a possibility of starting it again. When he came home, we had one put in place.

    It's not compulsory. If you don't have one, they can try resuscitation. If you do have one, they won't, providing they see the certificate.

    I don't know if hospitals have different policies. My dad was a month off his 96th birthday in hospital with a chest infection (not PSP). We were called to the hospital as he was nearing the end. We had to go into an office when we got there where we were asked if we wanted dad resuscitated if his heart stopped. I said of course not, he still had the infection, prostate cancer, osteoporosis and other age related problems. The doctor said if we hadn't got there in time to say that, they would have tried resuscitation if his heart had stopped. I think they are worried about being sued if they did something relatives or the patient didn't want.


  • Thanks, NannaB. X

  • Nice young man,but not my type!!!

    We (hospice & me) have been trying for ages, to get S to talk. The thing is he needs to ask questions and can't, so switches off. Can't find anyone to accept that he is a very intelligent man, which is still completely switch on, therefore will not be bullied into signing something he is has not had his queries addressed! They all treat him as the person he portrays, not good! I think he is frightened to express his views in front of me. Which I understand, he needs me to fight and if he signs these forms, perhaps I won't fight so hard! Who knows????? Certainly not going to give up, maybe next week!

    Lots of love


  • Sounds just like my husband.X

  • So sorry Heady but enjoy the time off - it's not your responsibility for a couple of days so make the most of it!

    Hope S responds well to the antibiotics.


  • Sad, but that's how I feel!!!

    Lots of love


  • i agree with what ash been said

    ;lol jill


  • Lovely to hear from you Jill. How are things? Hope you are able to enjoy the good weather.

    Vicki x

  • Hi Heady

    A little speechless... we're both thinking of you both... That's not much, wish we could do more.

    Hugs to you both. Hope it goes well.


  • Hugs always speak louder than words, especially from people who understand!

    Lots of love


  • Oh, how disappointing. They seem unavoidable, don't they ?

    I didn't realise the DNR should go everywhere with them. Perhaps we should have it tattooed across the chest ! What do you think S would say, Heady ? Would he want to be resuscitated ?

    Make the most of your freedom, love, Jean x

  • Ha ha Jean! I suggested to C that he had it tattooed on his chest. He was not amused! He hates tattoos.


  • You never know what will happen next. Dtrs are stupid which is why I personally stay away from them and I am not feeling so great :( S will rebound and everything will be fine. My heart goes out to you. Glad you had a good dinner <3 Try to rest if you can.


  • I am so sorry. I can relate...the UTI made me want to try anything else than the "G__D-___." catheter. We even tried the self-catheter. What a special treat that was. We are sticking with the "anything else" and loads of laundry. Oh, and yes, the wine. Best to you and S.


  • Darling heady

    In so so sorry

    Another crappy experience for you and S!

    I understand what your saying about knowing your way round the hospital

    I actually recognise staff in A and E and as I'm walking about within the hospital recognise various staff members,truly mad!

    Re the DNR, another horrible and difficult subject and I know it's one you haven't been able to get S to agree too! It must have felt very insensitive though when the doctor carted you off for 'that chat'

    I think it's all sent to try us!

    As for the carers turning up, does that surprise me, unfortunately not!

    I hope today your S has improved and I pray your day isn't too stressful!

    Sending you lots of love and hugs (and make you you have another 🍷 or two or three tonight)!


  • Hi Satt, yes nice and chilled! (Sorry wrong word in this heat!!!) getting to know what to do, what's the best time to visit, avoiding mealtimes and any other time, they might want me to do something! Dog had a long walk this morning!

    Want a laugh? I dutifully phoned the DN's office last night, left a message to say not to come to do S's INR (blood test for Warfarin) this morning. Not only did she turn up, but another arrived to check his bowels!!! Talk about breweries and organising!!!

    S a lot better today. Still having antibiotics by IV, but will move on to tablets tomorrow, when the results of tests come back. Should be able to come home then.

    Lots of love


  • I'm soooo pleased S should be able to come hone tomorrow

    You my darling, must be shattered!

    I understand and know the enormous, emotional strain this puts on us!

    DN ooh I get you, but I'm wary to write as we/me/all (probably me) upset Richmond and I'm sorry for that ,....however the DN than just popped in here does my head in!! Talking so loudly in front of dad! But their not all bad!

    Big hugs


  • I am still here Heady and so sorry to read about your latest drama. It just goes on and on and then It stops. I am now, tomorrow will be exactly six months since Chris died, glad he went the way he did. Despite my heart issues being found since I am now much healthier than I was six months ago and am off to see my cardiologist tomorrow for regular follow-up appointment. Unless he turns out to be on holiday when I phone for appointment later today. I have just had an old friend from UK staying for a week, she flew back yesterday. We talked a lot about old times, cried, visited his grave, cried and had a wonderful week. I know that sentence sounds weird but am also sure you will understand. There is life after PSP for all you carers. I am now planning my first solo travels - Iran in October.

  • Dear pattz

    Your post made me cry and equally smile!

    I'm very pleased to hear that you are doing sooooo well and especially liked your words that there is life for the carers after Psp!

    I personally want my Dad to be free of this dreadful illness as soon as possible and to be at peace and selfishly want to have a life too!

    So I personally commend your bravery and sincerely hope you enjoy your travels! ❤️

  • Thank you for understanding, as I am sure Heady will when she reads my post. I find I am enjoying life after PSP more and more as time passes. Plus after the last two hellish years of coping with all the PSP horrors I now find I think about Chris more and more in terms of all the good times we had in the past. We met 50 years ago in September as students. Remained friends after graduation but only in 1992 a couple of years after my marriage broke down did we get together. So I have a lot of amazing memories to call up, all of which sadly got lost during the final stages of PSP. Whilst there are often post here urging carers to focus on the good memories,I am afraid I never found the time for that in the hurly burly of daily care - we live in Turkey so I was sole carer until April 2015 when I found affordable day care for two days per week then on 1st September last year my daughter moved in to help and set up a screen printing business in what had been Chris' garden shed. You can see her work and lots of images of our garden and the area we live on My old friend who was here till yesterday pointed out how Chris had always been the supporter, looking after garden and domestic chores, while I earned the money. He had always dreamed of creating a garden in a better climate than northwest UK and he did it here. It is overgrown and in need of TLC at the moment but the bones are good and I have started working on the over growth. It is definitely his memorial, he achieved his dream.

  • Hello, Pattz, Glad to hear you are surviving and moving on. Sometimes I just think I will give up when I don't have Chris to focus on. I don't have the energy to do things for me.

    It lifted my heart to read that you are increasingly remembering old times and that you are going to Iran. That will be brilliant.

    Keep in touch,

    lots of love, Jean x

  • Thanks Jean. The past few weeks of good old memories popping into my head has also been good for me. Friends visiting makes this happen more. Six months ago I was a limp dish rag who soon turned out to have heart issues and that almost made me give up. But taking it slowly and following cardiologist's advice on diet and exercise, I still haven't managed to totally stop smoking which he won't be pleased about, plus lots of rest and a bit of necessary weight gain, have brought me part way back to where I was before C's PSP was diagnosed. I still sleep a lot 8-10 hours at night and another 1-2 in the afternoon. No doubt partly i fluenced by heat here, but it does me good. Omg just saw the time and must get off to town for an overdue mani/pedi which was something that never happened in PSP time.

  • lovely to hear from you, Pattz. I think of you often. best, ec

  • Beautiful words

    Beautiful memories

    One day I hope to have great memories too


  • sorry again for not keeping up... your daughter's prints are lovely, I like the moon especially. I'm sure Chris was happy she gave his shed a good use :-) Glad to know you have company too, your daughter, friends visiting, it must be so hard. Where did you live in northwest UK? I lived in Macclesfield for ten years before moving to the US.

    Sending you my warmest thoughts

    Lieve x

  • Hi Pattz, so good to see your posts. I have thought of you often and wondered how you were coping . I'm pleased to hear you are finding life after PSP and can think more about the good times with Chris.

    It must be good to have your daughter with you. I checked out her website. I love the designs and it was interesting reading how she started out.

    It was 35 degrees in our garden yesterday and I melted. I hope you are coping with the heat of Turkey but you are probably used to it by now. I worked in the garden from 8-10pm and it was still too hot for me.

    Take care Pattz. Enjoy life!


  • You are right about the heat, it's often over 40 here and we cope. No air con at home (I hate it) just a lovely. Green shady garden and a house designed to catch breeze from the sea which isn't far away. At this time of year work in garden only happens between 5-8am, and ground is baked hard so I have to remember to water the bed the bight before if I want to weed! All good fun.

  • I usually wake at 5am. Perhaps I should get up and do gardening instead of trying to get to sleep, don't think so. The position of your house and garden sounds ideal.

    Sending you love and a hug.


  • These warm mornings I sit in my nightie in the garden and have my morning tea. Bliss !!

    We have a lovely blackbird that serenades me.

    Jean x

  • Sounds wonderful Jean.


  • Tomorrow morning I will think of you and your guinea pigs !!

    Toast you with tea !


  • CheersJean, you gave me an idea so I'm sitting on the patio outside C's bedroom, listening to the birds and traffic roaringdown the bypasswhich does spoil things a bit. C has showered, and is asleep again. I'm in my nightdress. I got a bit of a shock when I sat down on the metal patio chair....boy was is cold! Tomorrow I'll remember the cushion. On our own today so I'm going to paint a birthday card for my brother. Well, that's the plan. Have a good day.



  • Thank you. Actually you can hear traffic here too. I sort of tune it out.

    When Londoners come into our garden they say " how lovely and quiet it is "

    When our friends from Scotland come they say, "there's traffic noise and planes all the time "

    Interesting how our perceptions change, isn't it ?

    Enjoy your painting.

    love, Jean x

  • How wonderful. A lasting memory for you. You are an inspiration being so positive, after all you have been through. Thank you. X

  • pattz, your post hit home. I often ask myself, " who will I be if I'm not the carer of my husband?". Thanks for posting.

    Hope you continue to live a healthier lifestyle, and become physically and emotionally stronger each day!

    Best, xo Jayne

  • Pattz, lovely to hear from you. Six months since Chris died, I am so sorry. I think this is one of the worst times. I know all anniversaries hurt, but six months.... No doubt everyone is saying, wow, is it really six months, knowing full well they had forgotten and moved on. You are still raw, as if it happened yesterday! But like all dates, the clock ticks and you wake up the next day.

    Really glad to hear that you are feeling a lot better and your heart condition is under control. By the way, are you OK? Thought about you, with all the troubles Turkey is going through at the moment. You don't do things by halves do you! Going from Turkey into Iran. Though I am sure, like everywhere else, it has its hot spots where not to go! Have fun, it's bound to be interesting.

    I do completely understand your week with your friend, of course you cried and laughed about all your memories of Chris. Somebody else has told me, how quickly you forget the last horrific time, with your loved one and the good memories come flooding back. I have already experienced this, when S goes into respite, by the end of the week, I can only see S, as he use to be, a bit a a shock when I pick him up. Takes a few days to get back into the swing of things!

    Anyway, S is well on the road to recovery. Hopefully, he may come home tomorrow.

    Thanks so much for posting, it means a lot to me, to hear from you again and know that you are on the right road, finding yourself a new life. Just knowing that it is possible, gives me and others that extra little bit of strength to carry on!

    Sending big hug and lots of love


  • Pattz, your post gave me 'hope' right now I am having difficulty remembering good times, dont feel able to build any good memories now, and defo think there is no life after PSP,

    You gave me hope


  • Thank you so much fornthat Debbie Ann. I still feel there's a way to go but it is really good recognising progress that has already been made.

  • I hope you are both feeling better by now. PSP doesn`t let you relax for a moment does it ? Just when you think things are running smoothly (!) PSP has a habit of kicking you in the teeth to remind you that it`s alive and working 24/7 !

    Hope S is alright and you `enjoy` your enforced rest.


  • Wow, Heady - what a nightmare! Echoing everyone else here, I hope S is feeling better, you had a little rest (any wine left ;-) ) and onto the next event...

    Big hug,

    Lieve xx

  • I hope you got a good night's rest and that the hospital have sorted S's UTI, I hope you plan for tomorrow earliest return works out. Take the time allowed for yourself and stuff the silly medics some really need to return to training, while others are really on the ball.

    Best wishes to you both. Tim

  • So sorry to hear Heady. He should definitely get over a UTI, but it is a good idea to have that discussion about DNR and live support systems sooner than later. Kim and I discussed this a long time ago and we jointly decided to support DNR and not allow intubation. When we got to the hospital 2 weeks ago, I thought she just only had a UTI, but soon found out she had aspiration pneumonia. The doctor walked me out of the ER treatment room and asked me about the DNR. It was hard saying the words, but I told him we would not do anything heroic. 3 days later she passed. It was the hardest thing to go through in my life. I lost my slightly older brother who accidently drowned at age 29 and I lost my precious mom at age 59 due to a reoccurance of breast cancer. But to lose the love of your life after 35 years of marriage and someone you did everything humanly possible these last several years, I'm still numb. We buried her a week ago and it still hasn't set in.

    Cherish every moment. Hold his hand. Tell him you love him. I did that a lot, but wish I could of done it 1000 times more.


  • Bless you ketchupman

    My thoughts are with you!

    Hugest hugs ❤️

  • It never feels like enough when its over.

    Big hug xx


  • Ketchman, I have been thinking about you a lot the last few days. Wondering, if S was going to develop a more serious infection. Thankfully, it appears to be OK, this time! One of the times he is rushed in, it won't be. Already I am looking around the hospital for quiet places, so I know where to run and hide. Is this sick or normal???

    I will have another try to discuss end of life care with him. Now we have sorted the Peg out, he might be more open to dealing with the rest.

    You advice is duly noted, I will tell S I love him a lot more, it will never be enough. How can you tell a man, how he totally transformed your life, when you are screaming at him, in a frustrated exhausted state about something so stupid, but oh so important at that particular time!!! PSP sucks, but you know that!

    Dan, know you are in my thoughts, I appreciate your post, knowing how you are suffering at the moment. You are one special man.

    Lots of love


  • Hi Heady, haven't been responding to posts of late as seem so tied up with

    ' hospital stuff' Ben still in hospital , was transferred to Pembury from BRI last Friday, spending most of my time either at the hospital or on the phone arranging things for his transfer either to local cottag hospital for rehab or maybe even back home ( not fully prepared for that as yet ) I do so feel for you, this is s----t. Ben and myself sat with the hospice nurse to discuss his wishes and made a draught,, he doesn't want PEG feeding or being kept alive if the quality of his life is not what he feels is worth fighting for. Trouble is that we haven't been through the whole procedure so not sure his wishes would be honoured. Only hoping that if he did take a dip that they would take note of his wishes, which I have reminded them of. He has twice decided to get himself to the loo and ended up on the floor, post hip replacement op, have reinforced to the staff that he is very liable to try again as so is one of the symptoms of PSP, hope they are listening to me!

    It is very strange returning home to an empty house after hospital visit, I am very used to him going away on business but this feel different. Ben s different to S as he has no desire to prolong his life, he said ' I feel I have been on this earth a long time' due to his family circumstances he has been taking care if himself since the age of 15.

    Hope S had gotten over the infection, fraid I had been living on a diet of sandwiches and wine, know I should resist be always gets the best of me come 7pm as i sit outside on these hot balmy nights getting lost in the the bright starry nights. Not sure what I am thinking but is definitely not good thoughts. Oh how I wish to be transported back to happier days.

    Sending you much love and massive hugs

    Kate xx

  • Sorry to hear how difficult things are at present.

    Thinking of you, Kate,

    Hug from Jean x

  • Kate, sending you love and support. Be strong.

    Hugs, Jayne

  • Hi Kate, glad Ben is getting closer to home. Why am I not surprised that Ben has been floor hugging! I think when they are starting to feel better, the risk of falling must increase ten fold! Hopefully, they will be able to make sure he does as he is told!!!

    S is now home, they said he could go home at 1.00, got in at 7.00, not too bad!!!

    As for the sandwiches and wine, just relax and enjoy. At least for a while, it can't do you too much harm, for a few days!!!! You will soon get into a routine and the diet will improve.

    Hope the house alterations are coming along and it's not too stressful.

    Lots of love


  • Alterations haven't actually started yet but plans well underway and builder and plumber are OK for mid August. We know them both so makes things a bit easier.

    Glad S is back home having recovered from his UTI. Ben is waiting for a bed at the local cottage hospital, had a call from the surgery yesterday for Ben, explained the situation but they couldn't divulge reason for call. His doctor called me yesterday evening at my request with the great news that Ben has osteoporosis, had the bone scan a month ago, the day before we went to Bristol. It never rains but it pours! Happy Days or what!!

    Have his sister down from Edinburgh for 2 nights so at least someone to talk to when home from hospital.

    Hope you are enjoying this spell of hot weather, lovely but bit comfortable at night but can't complain.

    Take care Heady.

    Love Kate xx

  • Oh Kate, what on earth are you going to do? Osteoporosis and PSP, what a combination! Suggest you contact a security company, they must have some decent restraining kit you could buy! Though it will probably have to be some despot third world government owned, to get something that is PSP proof!!! Also, I would find a good company that delivers wine by the shed load, sounds as if you are going to need it!!!

    Lots of love


  • I think you are spot on Heady, can't quite take in that he is likely to have more falls and more risk of breaks. How mean can it get! Xx

  • I don't think he is likely to have more falls, just he won't bounce. Hopefully, if you can keep him still, he should be fine. They wanted to test S for his bones, after his last fall, but I turned it down. The amount of times he has been on the floor, every bone in his body would have been broken, by now!!! Might actually save a few, as he now has a reason that he can understand so might be more careful!!!🛫🐷🐷🐷🐷🛬

    Lots of love


  • Noella21

    Oh Heady I so hope your husband gets better soon.You are so right about not asking about DNR at a time like this. Believe he will get better for now. Get some rest and yes get a good meal you will need your strength when S gets home. God bless you both.

  • Oh dear. Do try to ignore tasks and relax while you can.

    The docs are preoccupied with ," Do not recussitate "certificates. We have been asked by three doctors, a nurse and a neurology team member, so far. We now say that B. is not ready to discuss it yet!!!.

    One of my Care companies still charge, even if you give them a months notice. If I cancel them, I have to pay a cancellation fee.

    Hope all goes well. Big hug.X

  • Oh Heady, I am so sorry to hear S is in the hospital again and I know what you mean about it feeling quite "normal" to be there. I was recently hospitalized for an infection from a minor surgery. The staff kept looking at me funny until finally someone said," Now I know why you looks so familiar, your're the wife of that man who has that weird disease". Yes I am.

    Glad you are getting a break and resting. Big hugs and much love,


  • Well that one way to discribed it, personally I can think of several others!!! Hope you have recovered. Don't do too much too soon, she says, knowing full well you will!!!

    S has just got home, another crisis, been and gone, give me a minute and I'll be ready for the next!

    Lots of love


  • Oh, Heady, I am so sorry about S. Just have to say I share your upset about the DNR. When I took my guy to the VA to settle him in for his stay on Monday, TWO doctors gave him the speech about why he should have the DNR order, making sure that he understood how little help an attempt at resuscitation would be, complete with the same facts about dismal success rates, while I was trying to reassure him that this stay at hospice was just a short visit and nothing to worry about. I understand why ONE of them had to say it, but I had given them an advanced care directive form that didn't include the DNR because that is what he had already decided. I really hated it had to be discussed again twice at that very vulnerable moment.

    I will try to get him to agree to one for next time. It is the right thing to do. I guess.

    I hope things are better for your dear, and that you get a decent rest while you can.

    love, EC

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