Update on mum's c. diff

Discussion in 'ARCHIVE FORUM: Support discussions' started by ellie 123, Oct 9, 2007.

  1. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Hello everyone - hope you are all doing ok. Apologies for not being around for a while but - well, just haven't been up to it. Everything revolves around mum. the nhs, soc workers, etc. and sometimes I just do not want to relive it all by having to write it all down again. Does that make sense?

    Have spent the summer running two households and driving back and forwards from Notts to Kent. Trying to keep communication networks going - I always seem to be the last to be told anything.

    Mum has recovered from c diff 5 times now and a solution has not been found. In order to keep it at bay, the hospital do not treat any other infections she has.

    Three weeks ago had a meet with everyone - soc services, nhs continuing care, occupational, consultant and several others. At that time mum's diagnosis was confirmed as Lewey Body, although they havn't done a scan to confirm this. Continuing care was offered for first 4 weeks as mum's overall condition was deemed unstable and complex. Her doctor once again told me - no rush - take things slowly, she has a bed for as long as it's needed - which was a great relief to me. (This has all changed now.) A decision was made to have mum home for 24 hours - this took place. (Almost didn't and there were loads of problems, mainly because they had ignored things I had said at the meeting.) Do others feel that sometimes you're talking to a brick wall and that they know your family member better than you?

    So at the moment this is where we are at.

    No-one, absolutely no-one has been in contact since then. I arranged a meeting with soc services last Thursday, earliest she could make it. Suddenly we're talking dates and I have to fit in with them. I ask for 10 days to 2 weeks to get my situ sorted. Also told that mum no longer fits the criteria for continuing care. As there is no care package available and I've picked up a bug, I decide to come home. Friday, soc worker rings and tells me hospital wants mum out asap because they are worried she'll become institutionalised. She's been there 61/2 mths due to c diff, ands she's already institutionalised. Plus, if I can't be there in time she will have to go into care. Er, excuse me but isn't that just swapping one institution for another. I explain that I can't sort everything out my end so quickly and am told have to speak to hospital. Rang hospital, they know nothing - tell me no decision as been made about mum and doctor not around until next Wednesday anyway. Will ring doctor tomorrow to plead for another week, so I can prepare for mum's homecoming.

    Notts soc worker said she has been in touch with Kent soc services and informs me I must deal with them. Ring them to ask for professional help with adjustments to my home (which is a death trap at the moment) so I can bring mum safely home to Kent. They want nothing to do with me until Notts soc services contact them as they say no one has been in contact and they know nothing about mum. Notts soc worker only works part time and not available.

    Seeing my mother's reaction to change over only 24 hours, I was determined for her best interests to make the move from Notts to Kent as smooth as poss, but it would appear the system will not allow me to do this. That neither mum nor I have any rights and so now she has to leave a familiar hospital for a strange res. home to her home for 4 weeks then back into another strange res. home before finally coming to me. This is going to make us both stressed and ill. I spent all day crying with frustration. But good news - mum is 90 on Nov 15th. Finished!! love ellie
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Ellie, I'm not surprised you're stressed and frustrated.

    It does seem unnecessarily complicated, moving your mum from one LA to another. Surely it should be possible for them to liaise with one another to make the transition as easy as possible? Your poor mum is going to be so confused with so many moves in such a short time.

    I can only offer you sympathy. John's discharge from hospital was traumatic enough, and I didn't have any of your problems.

    Let us know how it goes.

    Love,
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hi Ellie,

    I know what you mean. Sometimes you feel you can't face going over all the same things again here on TP, but usually I find when I do I feel better just by typing it all out.

    Thanks for keeping us informed. I agree with your doubts that the social worker/hospital are really concerned about your mum becoming institutionalised. A bit late for that.

    I have no practical advice to offer but I know that others have had the problem of moving parents from the care of one local authority to another and may have some help to offer.
     
  4. paris07

    paris07 Registered User

    Jul 11, 2007
    74
    australia
    Hi Ellie,
    I also get very frustrated and angry trying to get sense out of doctors and government departments.seems to be when you get used to talking to one person they are sick or on holidays or left for good and you have to go over the whole story again.I spoke to 4 different sections and 6different people yesterday to organize a form to asses mum's assets.
    I hope you get your mum settled before her birthday, and all the very best of wishes for yourself and mum.
    regards
    Paris07
     
  5. xx.lauren.xx

    xx.lauren.xx Registered User

    Sep 22, 2007
    27
    england
    hug

    hi
    so sorry to hear baout your situation- i think everyone else has said it so much better than me but i just wanted to send you a vitual hug and hope that everything is sorted out soon. I know how fustrating it is waiting for doctors and social workers- i think we have all had a time when we felt so aggetated- you want to do everything to help but it all depends on the proffessional opinion.
    Keep smiling and keep us updated- hope that typing it out has helped you clear your mind,
    lots of luv
    lauren xxxx
     
  6. alfjess

    alfjess Registered User

    Jul 10, 2006
    1,213
    south lanarkshire
    Hi Ellie

    So Sorry you are having all this trouble.

    As the SW is part time and you need action and answers now, if she/he isn't available could you go above her, to her team leader or manager.

    I know I had to wait months for some action, when moving my parents from one region to another.

    I then got a bit angry and demanded the manager, who was very experienced and my immediate problems were dealt with the next day.

    That same manager, has been of great help to me since then.

    I have found that, you have to be persistant with SS and let them know that you want and need action, NOW, or you get pushed to the bottom of the pile.

    Good luck
    Alfjess
     
  7. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Good News!!

    Hospital has agreed to keep mum for the extra week I needed. I can hardly believe it.

    In fact, I'd made myself so ill worrying about what it would do to mum - that suddenly I just kind of stopped and gave up.

    I didn't phone the doctor yesterday. Neither did I phone the SW. I suddenly thought, what's the point in yet another battle which only results in me getting stressed and ill, when in the end they will do what they want to anyway.

    Then early this am, SW rang to say doctor had agreed to the discharge date I wanted (remember this is the same SW who said she had no pull with the hospital and it was not within her remit to get involved and it was up to me negotiate with the doctor). She also followed this up with the answers to several queries I'd left with her. This surprised as I'd thought I'd be chasing her up for ever, mind you most of it was along the lines of, 'well, I've spoken to the local office/person whatever and you'll have to do it yourself down south. So I suppose she didn't physically do much but at least she'd remembered my questions. Sorry I really hold SS in high esteem, don't I.

    So at least I've knocked one move off the timetable for poor old mum. It's such a relief and feels like such a big deal. It's amazing isn't that even the small triumphs make such a difference.

    On a different note - I've decided to fight the continuing care decision. I figure, especially with this subject in the media at the moment, that if we all make enough nuisances of ourselves in whatever way we can, maybe change will happen.

    My thoughts with you all, ellie
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Good news indeed, Ellie. Well done!

    I hope the move goes off without any more hitches.

    Love,
     
  9. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Dear Ellie

    I'm pleased you have, as you say, had one 'small triumph', but what a battle, eh?

    I do wonder if the 'system' is deliberately designed to wear us down, so that in the end we just give up. But, we need to carry on fighting for the sake of our loved ones; they deserve to be treated with some dignity. Although having seen the news recently, I'm not sure that word is in the English language any more!

    Keep us posted. I am particularly interested to hear about how you manage the transition from one county to another as I envisage at some point soon, I'll be in the same boat.

    You look after yourself.
    x
     
  10. ellie 123

    ellie 123 Registered User

    May 25, 2006
    91
    Hi Alfjess -can I ask you how you transported your parents?

    I've been told I will have to get a private ambulance, which is fair enough I suppose but the continous demands financially on a generation that were told they would be looked after 'from cradle to grave' makes me v. angry.

    Lucille - will let you know how I get on.

    I never want to be in mum's condition - some of the things I have seen and heard over the last 6 months only confirm all of the bad things that happen to the elderly in this country. I have fully instructed my sons on the end I want.

    love ellie
     

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