1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Self catheterisation

Discussion in 'I care for a person with dementia' started by canary, Sep 25, 2018.

  1. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,454
    USA
    Canary, I had trouble getting my post to appear, so sorry I was so late to the conversation.

    I'm sorry you have to do this. I think there is no great answer. I wish we did not have to make these impossible decisions. However, if he does have to have surgery, either now or later on, don't beat yourself up over the anesthesia issue. We can only do the best we can.
     
  2. Starbright

    Starbright Registered User

    Apr 8, 2018
    324
    Female
    @canary .I didn’t explain myself very well about oh ..his problems began when he had retention hence the catheter and prostate operation. Whew some days I just can’t get my brain into gear. ;)
    A x
     
  3. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Ah, I understand now @Starbright - I assume that after the prostate operation he developed incontinence. Yes?
    OH does not have an enlarged prostate, the problem is that his bladder is not contracting, so there is no option. Im glad to hear that the op didnt progress the dementia. Its a Russian roulette isnt it?
     
  4. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    336
    Just putting my twopenn'orth in - and I apologise in advance, as I do not want to alarm in anyway.

    A close elderly friend had to self catheterise in the way you describe due to enlarged prostate issues. He did not have dementia and was a very intelligent man, just a not very well one. With the contraption and advice they gave him, he proceeded and ended up with a series of increasingly nasty infections that made him seriously ill. He was so embarrassed he did not want to discuss the issue with the doctor or his own wife. The infections travelled to his replaced heart valves and almost finished him off.

    If someone that has their mental faculties and is unable to operate this 'equipment' - I am horrified to think that 'the powers that be' expect someone with dementia (or their spouse) to do so.

    Is there any way that the operation option could be undertaken with a lighter form of anaesthesia than a GA? They do joint replacements under local - could they not combine a local with a calming agent? Would that potentially be better?

    I'm so sorry that both your other half and yourself are in this horrid situation. I think it's a case of 'no more Mrs Nice Guy' - fingers in ears and la la la la can;- keep saying that OH is unable to do it and neither can you.

    Thinking of you both

    XX
     
  5. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Thank you @Toony Oony - yes infections are a real risk. I asked specifically whether the supra pubic could be done under local or even with a spinal block, but the answer is no. The surgeon said that he understood my concerns, but it couldnt be done any other way than a GA :(

    There really arnt that many alternatives. I suppose that I had wishfully hoped that people would come on and say - its really not that bad, heres a few tips. I have a feeling that Im going to have to jump through these hoops and give it a go before saying, well Ive tried and its just not working.
     
  6. Starbright

    Starbright Registered User

    Apr 8, 2018
    324
    Female
    @canary Oops No he is not incontinent...I really hope that you get the help you both need,
    Thinking of you A x
     
  7. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Sorry, @Starbright Im getting confused. I was thinking that you said that your husband needed pull-ups after the catheter was removed, but I have looked back and realised that it was a friend of Alice A - whoops :oops:
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    1,232

    My friend thought the same, because of so many blockages leading to medics being called out. Sometimes there was a problem several nights running, and many sleepless painful nights. The husband was taken eventually taken into hospital, he had retention too. However the hospital did several trials what ever those were, he was a bit vague, my friend could not visit because of the distance and after two weeks he was sent home with pads. She was amazed and wished they had done that to start with. She is waiting to see a continence nurse as she gets wet beds but she needs helps to get the right pads etc. She is disabled herself.
    He had had trials before but this longer stay paid off. I hope you have a good night. X
     
  9. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,507
    Female
    Chester
    I think you need to contact your GP and or the district nurse team and create a hullabaloo, saying you just can't do this, can they do it. However if it is 3 times a day, you might be stuck in the house forever waiting for district nurses to come.

    I remember @maryjoan saying she couldn't cope with doing a stoma bag and got district nurses to come in, or similar so may have something to say which may help you.
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    949
    Female
    South of the Border
    I found that my OH reacted badly to me dealing with his stoma and bag - and I hated doing it, much as I love him. It was the suggestion of one of the stoma nurses, that he might react better to someone in a uniform - and that was when we brought the carers in - and it has worked very well.

    This time last year he was catheterised for a different reason, and he would go to the bathroom and empty the catheter bag and forget to close it off again - get into bed and it would just drain all over the bed.... thankfully we do not have that problem now.

    It is hard enough caring for someone with dementia on a daily basis without having to carry out these jobs as well ......
     
  11. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Well this is going to be interesting.OH went to bed at 10.00 I geared myself up to to try the catheterisation, but he wouldnt let me to do it. He knows that he has a big appointment in London tomorrow, and wants me to start on Friday................
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,576
    Kent
    For what it`s worth @canary I would absolutely refuse to do anything connected with a catheter other than empty the bag. I would be terrified.
     
  13. Sirena

    Sirena Registered User

    Feb 27, 2018
    607
    Female
    I completely agree with GrannieG, emptying the bag yes, anything else definitely not. Far too much to go wrong.

    Just to mention, in case it helps at all, my mother had a general anaesthetic in June. I had read about the difficulties with GA so was bracing myself for problems (it was not avoidable, because she fell and broke her hip). But she actually did not seem much affected by the GA. She was in hospital for ten days and that was difficult due to the staff's lack of time/care/understanding, but once she was back at the care home there did not seem to be any sudden deterioration.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Im glad it worked out OK for you @Sirena and yes, I know the decline is not inevitable, but its always worrying that the ball might fall on your number.

    At the moment, OH is trying desperately to postpone the attempt at catherisation and I dont feel I can force it.
     
  15. Ducky601

    Ducky601 Registered User

    Jul 24, 2018
    109
    Hi Canary
    What a very difficult situation for you. If I was you, find out the name of the Continence Service Clinical Lead and contact/write to that person. It is an unacceptable situation - this is the only practical advice I can think of for now but sometimes you just need to go to the top. As if you haven’t got enough to deal with - I hope that you get things sorted very soon
     
  16. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,454
    USA
    Canary, this has got to be causing a huge amount of stress and I am sorry. As I said earlier, although not very well, I completely understand why you don't want to cath your OH, and I agree with you and would feel the same way (for what that is worth).

    I agree that my mother's surgery in 2017 went much better from an anesthetic standpoint than I would have expected. It helped that it was a fairly quick procedure, so only about an hour or less actually "under" the anesthetic. It helped that I was permitted into the pre-op area and spoke directly to the surgeon and the anesthesiologist about my concerns and they listened and understood.

    I do think my mother had some decline, but it's hard to identify the anesthesia as the cause, as there were a number of contributing factors and I can't actually point to the anesthesia as a problem.

    I'm just gently urging you to not fixate on an anesthetic as a definite problem. The bladder issue has to be dealt with one way or another and it is NOT your fault. If he has to has surgery, that is also not your fault. Please lay the blame where it belongs, on the disease. I definitely understand how it can feel that we are condemning our PWDs to this or that (I have been there) but we are not responsible for them having dementia.

    It is awful and I am sorry.
     
  17. Starbright

    Starbright Registered User

    Apr 8, 2018
    324
    Female
    No problem ...hope the appointment in London went ok today A x
     
  18. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Thank you Starbright.
    The tests in London went OK although we have got back late. I have no idea how they went - they are preliminary tests before we see the consultant, another new one, because there is the suspicion that the same thing is happening to his bowels ie that the nerves to them are not working, in this case causing constipation (he has terrible problems with hemorrhoids)
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    1,232
    So sorry to hear this, this everyday issues just pile the pressure on you both. Constipation and piles must make him extra irritable too.
    I hope that you have a restful day to get over yesterday. X
     
  20. canary

    canary Registered User

    Feb 25, 2014
    7,953
    Female
    South coast
    Yesssss!!!!!
    I am posting in triumph - Ive managed to do the catheterisation :D

    OH had been using every excuse in the book for me not to do it - oh Ive already been to the loo, we havent got time now, can we do it later/this evening/tomorrow? Sound familiar? :rolleyes: And, if Im honest, I didnt really want to do it anyway.

    However, I got a phone call from the incontinence nurse this afternoon and I had to admit to her that I hadnt done it :oops:. She was very nice about it and encouraged me to at least try and persuade him to try. So this evening I put on my big girls pants and said firmly that the nurse said he had to do it and it would mean that he didnt have to get up at night to go to the loo.
    So we trooped up to the bathroom and I put on my professional hat and a calm and efficient manner and just got on with it. He was surprisingly compliant and it didnt go as badly as either of us expected. Whew!
    Hes now in bed asleep
     

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