S is fine! Yippee!!

The district nurse has discharged S, he doesn't need their service anymore. Hurray! He does not need anymore enemas. Thank goodness!

My problem? No one has discussed this with me. Even bothered to inform us they weren't coming anymore. So this morning, I phoned when they were late, Carers here waiting to shower him, left message on answer machine. Never called me back. It's my morning off, couldn't leave Carer on her own, phoned again. Big row with woman on the phone, they don't give times,(well they did to me!!) they would get there when they could! S was way down on the priority list! Still nothing about him being discharged! Eventually DN turned up. Said they didn't have the resources to look after S, he didn't need to keep having enemas. They have far too much work, looking after people that were dying!!! This was NOT the way to manage his bowels! (Oh, by the way, he did have to have one this morning!!!)

So I am now at a complete loss. In One way it's good, my husband has not got this bloody awful disease, he is not dying, he does not need medical care!!!

I am so upset, how dare they treat us so badly. Who can I turn to? The way it's going, S will have to go into a nursing home soon, it's the only way he will get the medical care he needs!!! One thing is for certain, if I had a choice, I would not let them anywhere near S again!!! I bet, if they were relying on me to pay the bill, instead of paying up front like we do, we would get better service!!!

Lots of love


32 Replies

  • I've missed something? He's been in hospital...or do they come out to give him the enemas...how long has this been happening...and it's true enemas are not good for the muscles , long term....but if he still needs them....have they not explored alternatives to his bowel needs? I'm lost Heady, I thought you WERE putting him in a nursing home....I been gone longer than I thought.....

    I hope you meet with more cooperative people


  • Heady so sorry to her about the DN, our DN is so lovely they are always there when you ring up, and she comes in once a week to see how George is. I can't believe they said they are looking after people that are dying, they should sit down and look up PSP, they are terminally ill people, oh god when are these professionals going to up their game, and read about PSP, it is not a easy road for them and us.

    Our DN took away all the paperwork we had and photocopied it and they have read it, and she evens looks at our blog, here's to our DN Monique, she has just become a matron, she is so caring, and all the other district nurses are lovely, counting my blessings.

    Heady hope you can sort something out to be able to keep S home for as long as possible. Sending you a massive huge from New York xxxxxx😅😅😅😅😅

  • New York, New York!!! Oh I wish!!!! What are you doing checking in? You should be out enjoying. Still appreciate the hug though, really needed it!!!

    Lots of love


  • Heady we came to New York for 7 days, never walked so much, my sister is more tired than me, looking forward to coming home xxxxxx

  • Hi AVB, S has been having lots of problems with his bowels. Was in hospital for a few days, a couple of months ago. Have been desperately trying to get the community nurses, (district nurses, in English!) to come and help sort him out. Finally, they got a plan in place, were coming out three times a week and giving enemas if needed, which was most times. Suddenly decided to stop, but unfortunately, didn't bother to tell us, or discuss it!!! So fed up, there is no respect for anyone that has a long term illness. You are just made to feel a total burden on society!

    The sad thing was, the treatment was starting to work, he was able to "go" on his own. I just hope this continues. The last thing I want, is him, sat on the toilet for hours, with nothing happening, getting into a panic and thinking he is about to die, which is what has been happening. How I hate this illness with a vengeance and the professionals who we have to deal with, even more!!!!

    Lots of love


  • Oh Heady that's disgraceful, talk about banging your head against the wall and getting nowhere! It's like I am always saying, things would get done a lot quicker if the shoe was on the other foot and they were having to cope with this b....y awful PSP!

    I think I'm in for a good time on Monday, specialist OT and Parkinson's nurse are going to do yet another assessment on Keith for CHC, that should be fun I can't wait (not!) I'll keep you posted with the outcome!

    Take care,

    Lots of love....Pat xx

  • Oh Pat, I hope you get it ! Not that it's a magic wand, but it does stop one tiny headache!!!

    Lots of love


  • Love to you as well Yvonne! xxxxxx

  • Heady I've had a really bad day today which ended in a total meltdown this evening, I'm really not sure how much more I can take, I'm so fed up with cleaning up messes, washing and trudging backwards and forwards to the loo! Keith gripped my wrist so hard tonight because I was trying to push him down onto the loo when he said he couldn't sit down, it's left me with a bad bruise where he gripped, considering he can't do anything by himself he is still incredibly strong! I know he will be upset tomorrow when he sees it and as for me I'm like a leaky tap, just can't stop the tears flowing, I'm supposed to be going out for lunch tomorrow with my mum and sister, my eyes will be so puffy so I hope the suns shining and I can wear sunglasses!

    Love and hugs....Pat xx

  • Probably a silly question but do you have a raised toilet seat? C was scared of sitting on the loo as he knew when he started to sit, he would fall backwards ( he broke the toilet lid which I didn't replace). He was better once we were loaned a raised seat but after a few months I bought an even higher one from the Internet ( my legs were swinging when I tried it). He had no problem sitting down after that. Fortunately/unfortunately this stage will pass and you will look back on the days when what he passed actually landed in the loo.

    I hope you manage to forget things for a while tomorrow and manage to find things to laugh about with your mum and sister.

    Sending you a big hug.


  • Pat, we had the same problem for a long time! Even with a higher toilet. The thing that is helping now, is one of these "turn around trolleys". A bit like a sack truck! They are wonderful for transferring. Now S can lower himself up or down, feeling in control. No more upsets at toilet time!!! Oh that, and having a Catether fitted. They really are the best thing since sliced bread!!!

    Sounds as if the tissue company did well out of us yesterday. Hope you are feeling better today! I am, sort of!!!

    Lots of love


  • Yes like NannaB said, get a raised seat...You can get a toilet that is high seated or just get a "supplement" to the one you have now.....to help heim sit down, I stand Next to Bruce. I then take the wrist next to me and firmly place my other hand on the small of his back. As he glides down I press into his back so that he feels safe.....oh and before he even sits I make sure that the back of his knees feel the toilet to know that it is there and he is in proper seating placement.....

    My guy has gone through 4 toilets and the one I have now, the tank was immediatly cracked by Bruce.....

    I think thats a testament to my slow learning. But with the way that I help him on the toilet now, I do not get hurt , the toilet stays in tact and Bruce knows where he's going!

    hope this helps....


  • Pat hope you are keeping well, hope all goes well with the assessment, and you get the CHC sending you a big hug xxxxx

  • Sorry Yvonne I replied to you in the wrong box!

    Sending you big hugs too! xxxxxxx

  • Me too Pat to you, read your other post, things are a bit difficult, hopefully you will get the CHC and things should get better. Big hug to you and Keith xxxxxx

  • it is all just a nightmare isn't it, for us all, in different places, stages, but same ways, thank goodness fot this place to feel there is someone listening, my mind is so mushed up at the moment with decisions , love to you all, xxx

  • It really is a continuous nightmare we're all going through, I wake up every morning with that dreaded feeling of "Oh no it wasn't a dream it's actually happening!" There seems to be so little to want to get up for now, I'm having a really bad day, sorry 😔 xxxxx

  • Pat hopefully things will get better big hugs 🌹🌹🌹🌹

  • Know what its like. Hope things go well on Monday so at least one thing is moving on. Tiredness is just so awful. Hate the mess. Hate the person I become. Hate PSP.

    Hope weekend better.

    love and a big hug, Jean x

  • So sorry. It sounds as if you are being completely discounted. That's what makes this such a nightmare. No control over anything.

    Hope it gets sorted. Hope S can perform on his own !! That will show them.

    Love and hug, Jean xx

  • Like I said, according to them, S is not in need. I was left with the feeling, they don't believe S has anything too serious, that we are abusing their service! I have got the PSPA to send me all their literature, just hope somebody down there is capable of reading. I doubt it!!!

    Lots of love


  • I hate it when I feel that. Its hard enough needing them without them giving you the feeling you are seen as greedy. At least anger riles me whereas sympathy makes my tears flow !

    Good luck. Love and a hug, Jean x

  • How disgusting that they just take thst decision without discussing with you first so you could look at getting other help in place. I'm. Fairly new on here so don't know your situation as such or what has been tried before. Do you have a continence advisor locally thst the GP can refer you to if DN refuse to now help? Check in with GP and get them to get something in place or the contacts at your Neuro team? Surely they have a duty of care to make sure something is in place before just stopped the enemas because they haven't got the resources. Big hugs.

  • So sorry you are having problems with the DNs Heady. If you think S still needs them, speak to your GP. C hasn't "been" for 5 days so I'm dreading later as I've given him the maximum dose of Lactulose. I didn't give it yesterday as I didn't want him to produce results while he was at the hospice. The only way he can be cleaned up is on a bed and if they didn't call me, C would have felt terribly embarrassed. I couldn't put him through that.

    I hope today is better for you both.


  • Have they ever used micralax micro enemas . We had them recently . They were delivered but as the DN turned up to use them and show me he started to go

    They gave my two .

    He was still struggling so I tried inserting one myself , it is suppose to work pretty quick but didn't in johns . Did help a bit .

    So difficult giving th opening Meds and then being able to go out and leave him isn't it . Having only one sitter they are not allowed to commode them .

    Hope coming goes soon it know how worrying it is ..

  • I time the big dose for when I know we are staying in.


  • I will phone the doctor next week. S's bowels have given up the ghost, he still knows when he wants to go, but doesn't know what to do, when he gets to the loo! I feel like a midwife, telling him when to push and when to breath! I feel so let down by the DN's. They are treating us, as if we are abusing their service. I would love to tell them exactly where to put their enemas and for a change it wouldn't be in S!!!

    Lots of love


  • That's funny Heady...not for you, but I've just said exactly the same and the baby was born!!!!!! And in the right place for a change. It took the maximum dose of Lactulose though and as it was very soon after taking it, I hope there is not more to come once C is back on his chair. Can't understand your DNs, ours are very helpful. That doesn't help you much either, sorry.

    Lots of love.


  • NannaB you made me laugh on that one! x

  • We obviously missed our calling!!!

    Lots of love


  • I may have missed it but I've not seen 'Movicol' mentioned as a help to overcome constipation. It certainly helped manage the problem when I was caring for my wife. It's big advantage is that it could be used long term and the dosage could be varied to match the severity of the problem. Try Googling it for more information to see if you think it might be appropriate to mention to the DN. Once the initial problem was overcome the dose was reduced to maintain a comfortable condition. I also received advice on diet from a nutritionist that may have helped. Ultimately that particular problem became much less of an issue.

    I am sure you will ultimately resolve this problem but it's such a shame it has to be such a battle when the energy expended is much needed elsewhere.

    Best wishes, Jerry.

  • I have tried everything for John . He has porridge and I crush Weetabix into it as well .

    I blitz tin fruit and pour over .

    The tell u to give double doses of Movical which I do , and add lactoluse to is .

    Nanna b how much .lactulose do you use at a time , .

    We get times when nothing will shift it and I can be hoisting and commode for many many times during the day . . I do my best to keep him hydrated as much as possible .

    Can then have a good period when he is going more smoothly or normal . I have learned then though to keep giving a movacol though . Otherwise it comes back and bites you on the bum .! Forgive the pun

    The district nurses with us tend to not worry about it and tell me keep giving the movacol regardless so you are not on your own .

    I think they see so many different people they get sort of hardened to it . By that I don't mean they don't care .

    They also go to houses where people are completely on their own , I can't bare the thought of that !! they think we can manage .

    I tell them to take me out of the equation , John is on his own then . I had to tell them that at the CHC meeting ,

    We all do a very difficult job so well .. And kick ourselves in the foot , SO let's give ourselves a pat on the back .

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