1. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    Dies anyone one care for someone with dementia who has to self catheterise?

    My OH has had a lot of tests and has discovered that the neuropathy that is in in his arms and legs has extended to his autonomic nervous system and he is getting urine retention as he cannot empty his bladder.

    He has been given the choice of either self catheterisation or having a supra-pubic catheter fitted under general aneasthetic. I have several fears here.The first one is that although he is very aware and has not lost his short term memory, the ability to do tasks is one of the things that has been severely affected. He also has severe hand tremor which means that he cannot tie shoe laces, do up buttons and has trouble with cutlery. This means that I am wondering how well he will be able to perform the self catheterisation.

    The alternative of a supra-pubic catheter has its own problems. There is, of course, the problem of the general aneasthetic and whether this will progress his cognitive problems. Also, the catheter would need to be changed every 6 weeks and I think from the literature that they will expect him to be able to do this himself, once he has been shown!

    OH and I have to talk about it and decide which we want to go for and I am lost in a sea of fear and doubt. All advice welcome.
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,146
    Get a second opinion, a friend's husband is in a similar state, he has a catheter but nurses have to replace it.
    He makes sediment that blocks it too. Some people do. This involves dashes to hospital or nurses coming out.
    Sorry not to be that positive, but it depends on the actual person.
    Good luck. X
     
  3. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    Hi Alice, I dont think we have any choice about some sort of catheterisation. I thought it was just an enlarged prostate, but apparently its normal sized, so the question is - what type of catheter to use?
     
  4. Starbright

    Starbright Registered User

    Apr 8, 2018
    395
    Female
    Hi canary, When my oh had a similar problem l changed the am and pm bags and the 5 day change (( he wouldn’t and hated it)) this was after a crash course the last time he was in hospital.The district nurse came out to do the 6 week change , just wondering if that would be possible for you to get the district nurses out in your area. Sorry not much help. Good luck hugs A
     
  5. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    83
    Scotland
    My experience of catheters is not with my Dad who has dementia but a close relative who had MND and chose catheterisation to make life easier when she was wheelchair bound.

    The district nurses were very closely involved as R was one of those people who made a lot of sediment and the catheter often clogged and had to be replaced. The nurses managed this process entirely. The catheter wasn't a suprapubic one.

    In terms of emptying it, during the day her carers and close family would empty the bag by emptying it into a jug and then disposing of contents down the loo. ( R no longer had strength in her hands to do it herself) All very quick and easy. At night-time her carers would switch to a larger bag/stand. During the day the bag was just taped her lower leg for ease.

    Emptying the bag doing the day just became a habit for us when visiting. The only thing to watch was remembering to turn the valve back to closed - which I forgot to do on one occasion! Oops.

    But I'm aware our experience was based on extreme physical disability and your husband has mobility so your choices are different. This link might be helpful though:

    https://www.nhs.uk/conditions/urinary-catheters/living-with/
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,146
    No, you don't but apart from emptying the bag which is fine are they suggesting he changes the actual catheter?
    Perhaps I misread your post it was early!
    Keep in touch. X
     
  7. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    @AliceA - The 2 types of catheter they are suggesting dont have bags that need emptying. The one they want him to use is one that is inserted each time he gets a full bladder and is then removed - this is the self-catheterising one and they want him to be able to do this himself. The other one involves surgery to create a a pathway from the bladder to the outside (bypassing the penis) which has a a sort of tube with a tap on it, so that every time he gets a full bladder the tap can be opened. This tube has to be renewed every 6 weeks and apparently it can be done by the patient himself.

    So, yes - they are expecting him to be able to insert the catheter himself, although neither of them are the permanent sort that needs a bag.

    I am concerned that the manual dexterity needed to do this is beyond him - and also that he has trouble with working out how to do tasks, so that self catheterisation will be impossible for him. If he goes for the supra-pubic one then this will require a general aneasthetic.
     
  8. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    CNary, I'm so sorry you are in this situation.

    While I know very little about this topic, I think your concerns about his ability to self catheterize (now and in the future) are valid. Is it possible for you to have a private conversation with the relevant person (urologist, surgeon, whomever), or even another medical person you trust (GP) about how to best weigh this up?

    I fear they don't understand your OH's current and future limitations and hence something is getting lost here.

    I think it needs more discussion and to see if these are truly the only options, and to know more about what is involved.

    I hate these difficult decisions and situations and am so sorry for you.
     
  9. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,261
    Female
    South of the Border
    I totally agree with Amy in the US and others on here. This sounds like a complex issue which can only become more difficult in the future as OH's dexterity possibly worsens.

    You should not have to be responsible for an issue that is outside of your skills - we are carers not medically trained, and I think this is a medical issue, just like my OH and his stoma.

    Please get as much professional advice as possible before making any decisions that cannot be reversed. Sorry, but that is the best I can suggest.
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,980
    Female
    Dundee
    I'm in agreement with others here. I think it's unfair to expect someone with any kind of dementia to self catheterise. Apart from the dexterity issue there's the issue of understanding and processing.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    Thank you for the link @Amelie5a - it is the intermittent catheter that they want him to use - they gave us the information referred to in your link. They dont want him to use the indwelling catheter - probably because (as you suggested) he is is still mobile and very aware. The supra-pubic catheter isnt mentioned in that link. If found this info though https://www.bladderandbowel.org/surgical-treatment/suprapubic-catheter/

    Yes @Amy in the US @maryjoan and @Izzy you understand exactly my problems - and I dont know who to turn to for advice
     
  12. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    4,999
    Female
    Chester
    Based on comments is it something District nurses might be familiar with, is it possible to see if you can speak to a practice nurse who might have experience and opinions on the options

    Might not be appropriate but doesn't seem things have been considered in the 'whole'
     
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    58,980
    Female
    Dundee
    I wondered if you had ever tried contacting the Admiral Nurse service. Apologies if you've already done that. I know they don't cover all of the UK but you can contact them by phone or email. A phone chat with them might be useful. We don't have them in Scotland but I once emailed them and got a very helpful and thorough reply.

    https://www.dementiauk.org/get-support/admiral-nursing/
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,146
    Right, I understand. It does not seem very likely he will manage does it? It sounds as if it could be difficult to say the least.
    My friend has just emailed. her husband has just had another catheter block after four days. He was a very clever man but could not tie his own shoelaces. The family now suspects he has always been to some degree autistic.
    I suggested the supra pubic type a while back. He baulked at the thought of an operation.
    Now there have been several 111 calls he has an urgent appointment for a pre op. It is planned that he is examined under an anaesthetic. They are so worn out.
    I hope that you sort it out soon. X

     
  15. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    83
    Scotland
    In terms of the anaesthetic......I think it would be a light general one as the procedure itself is very quick. It also seems to be possible to have it done by a local anaesthetic.

    The thought of catheterising every time your OH has a full bladder sounds a bit of a nightmare - even without the health issues you've outlined.

    At least with the in-dwelling catheter once it's in, it's in. Well, for a few weeks. And as for replacing it, surely your district nurses could do it, if asked? Is there a nurse at your GP practice you can talk to about it?
     
  16. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    @canary I am frankly stunned that the medics are apparently expecting your OH to self catheterise! I honestly can't believe, as others have said, that they have looked at his overall health situation properly. Self catheterisation would surely be a challenge for most fairly fit people, and very difficult (bordering on impossible) to achieve for someone with neurological / dementia problems such as your OH has.

    Can you talk to his GP about this? Or get back to the specialist team if necessary. Honestly I worry that this could be a step too far for both of you.

    All the best.
    Lindy xx
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    I tried getting hold of the Admiral nurses yesterdays and continued until they shut, but couldnt get through. I didnt want to leave a message or email as its rather complex. Ill try again today as the consultant will (apparently) be phoning us this afternoon to ask what OH wants to do..

    Yes @Amelie5a and @Lindy50 it feels like a bit of a nightmare. I have a feeling, though, that we will have to go through the hoops of at least trying and showing that he cannot do it.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    The consultant did not phone :(
    Why am I not surprised?

    I finally got hold of the Admiral Nurse who was very helpful and I now feel I have a better idea of what is involved and what sort of questions to ask. But I now feel Im just left dangling and dont know what to do.
     
  19. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Do you have yet another appointment @canary ? If not, you can’t really do anything until the consultant phones??
    (((Hugs)))
    Lindy xx
     
  20. canary

    canary Registered User

    Feb 25, 2014
    9,673
    Female
    South coast
    Nope
     

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