1. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    Hi @canary .. I would ring the consultant again after all he did say he would call you back last week ...Its madness that they are expecting your OH to do this with the complications he already has...sorry I’m no help but hoping they see sense and just get a district nurse to you.
    Take care and good luck A x
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,622
    USA
    Canary, I appreciate it may well be different in the UK, so please feel free to ignore my advice.

    For what it's worth, I have worked for doctors and the consultant leaving you hanging may not really have a grasp of what you're going through. I would, politely but firmly, contact their office/nurse/receptionist/whomever and explain the situation, concisely but clearly. Then ask the best way to get a message to the consultant: email, voicemail, written letter, message with the nurse/office staff, telegram, what have you. Then I would contact the consultant once in that way, with all the information. I would wait a short time after you know they have the communication, maybe 2-3 business days, and then keep contacting them at intervals until you get the information you need.

    If you get someone on the phone who is sympathetic, get their name and talk to that person each time. If you can get an email address, I would go that route, as it leaves a paper trail. Failing that, you might write a letter, and fax it and mail it.

    If the admiral nurse or your GP or similar can advocate for you, that's another possible route.

    If I have overstepped, please forgive me. I know physicians are overworked, but cannot abide a doctor or doctor's office, who will not help a patient.
     
  3. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,622
    USA
    Postscript: you probably knew all that. I'm sorry, I was upset on your behalf. No offense or insult intended.
     
  4. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    None taken
    You and @Starbright are right, I need to contact his secretary, but at the moment OH is having mega amounts of seizures again and Im trying to get him out of them. He also has 3 appointments for other things in London next week that I need to sort. I think this will have to go on the back burner for a while.
     
  5. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,251
    Nottinghamshire
    (((Hugs))) @canary

    It never rains but it pours!!!
     
  6. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Oh @canary!! :(
    Hope OH is better soon.
    (((Hugs)))
    Lindy xx
     
  7. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    The seizures are becoming hard to manage - Ive just got back from helping OH up from the bathroom floor. Its OK, I didnt lift him - he just had to be talked through how to get himself up using the grab rails. Thank goodness one of the appointments next week - the one on Monday to be precise - is for the epilepsy specialist.
     
  8. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    You really have it tough @canary and my heart goes out to you....I do hope the next appt goes well and you get the help you need with Oh and the seizures.
    Take care ((( here’s a hug ))) A x
     
  9. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    All hugs gratefully received :)
     
  10. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    UPDATE

    It has taken a while, but OH has been referred to the continence clinic (via the GP) and saw the nurse yesterday.
    I explained the problems with difficulty sequencing and learning new tasks and also about the hand tremour. She was sympathetic, but very insistent that he should at least try the self catheterisation. OH (of course) sounded extremely on the ball so she showed him what to and he said he understood :rolleyes:. Fortunately she got him to actually do this and it became very obvious very quickly that he was completely unable to do it and she had to pretty much do it for him. However - she now wants me to do it for him :eek:. Im not very happy about this - he was wincing, groaning in pain and going ow ow! all the while she was doing it (even though she was using the one with the smallest tube). Im really quite scared of doing it in case I hurt him and I honestly dont know whether he will allow me to do it.

    The catheters have now arrived and Im supposed to do this three times a day...........
    Any advice?
     
  11. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,300
    Female
    Dundee
    Oh goodness - I don't think that's acceptable. My husband had a catheter for a fortnight and the district nurse came to change it for him. I emptied the bags of course but there's no way I would have agreed to putting it in. I doubt if he would have let me do it either - he let the nurse do but I don't think he would have let me do it. I would be tempted to tell them you've tried and it he won't let you do it. My husband also spent most of the two weeks trying to pull it out.

    Wishing you luck.
     
  12. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    Ah, I think your husband had an indwelling catheter, which does have to be inserted by a nurse.
    OH has got self catheters which are used to drain the bladder and are then binned - they dont stay there all the time. Its supposed to be done by the person themself, but the nurse wants me to do it
     
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,300
    Female
    Dundee
    Oh yes - you're right! I wasn't thinking straight there. Still I would not have been happy doing what they're suggesting you do.
     
  14. Baby Bunty

    Baby Bunty Registered User

    Jan 24, 2018
    294
    Hi . Some off these health professionals have no idea!.i find this totally unacceptable .i would personal opt for supa pubic and.and get d/ n to change it every 6 weeks..if they want self cath ..they should organise a d/n to come on do 4 times a day!!Think off you
     
  15. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    Im glad its not just me being a wimp, Izzy and baby Bunty

    If this doesnt work, yes OH would have to have a supra-pubic catheter, but that would involve a general aneasthetic to form the outlet and I know the risk of further progression of his dementia with a GA.

    I feel in a lose, lose situation

    Has anyone else on here had to do this?
     
  16. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    I feel for you@canary..I too think what they are asking is not acceptable.....when himself had huge prostate problems 2 years ago I emptied his catheter for nigh on 6 months it was changing morning and night and that was bad enough...but to do what they are expecting you to do No,just my view others may think differently.
    Maybe you just have to go for the Supra ...once in would that be less stressful for you both.?
    I’m sorry I can’t be more help

    Thinking of you here’s a ((((((hug)))) A x
     
  17. Starbright

    Starbright Registered User

    Apr 8, 2018
    339
    Female
    @canary I should have said my husband did in the end have an operation on his prostrate under GA...whether it pushed on his dementia we don’t know but it did make life a bit easier. We can never really know whether we make the right decisions with this illness do we, all we can do is our best .
    Thinking of you A x
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    1,584
    This I should say not personal experience, but a friend's husband spent months of blocked catheters. Eventually forced by continuing 111 calls a spell in hospital to retrain the bladder did not work but he is happier with pull-ups and she with the resulting washing. The catheters caused nights of agony waiting on medics.
    She became an expert on what could go wrong with catheters.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    8,600
    Female
    South coast
    He has to have a catheter of some sort @AliceA . He is not incontinent - in fact,quite the opposite - he is getting urine retention as he cannot empty his bladder. If I had a choice over it I would not choose any sort of catheter either.
     
  20. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,622
    USA
    Canary, you are not being a wimp. I wouldn't want to do this either, not just from a squeamish standpoint, but also because I wouldn't want to be doing this procedure multiple times a day on someone with dementia. I would be concerned they would build up a negative association with me and the catheterization. I would also be concerned about the mechanics of this procedure maybe putting me in a vulnerable physical position if he got upset (I am sorry to say this, but am imagining catheterizing my OH and he is so much bigger and stronger than I am-there is no way I would want to do this).

    I am sorry they did not listen to your concerns and I am with you all the way.

    My only thought is having a nurse or professional carer come and do this.

    I hope you can find a solution. I'm so sorry. (((Hugs)))
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.