Husband now has a catheter. Any tips

Discussion in 'I care for a person with dementia' started by tre, Dec 3, 2015.

  1. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    My husband is now in the severe stage and his mobility and speech are very limited. On Sunday I was aware when I took him to the toilet that he had not passed urine. Last wee was around 11.00pm Saturday night. When he still had not gone by mid afternoon on Sunday I was worried and phoned 111. They got a Dr to ring me who then sent a Dr to visit. She said she was calling an ambulance as he was retaining urine. His abdomen was now quite swollen. He was not complaining of pain and was eating normally although his mobility was even worse than usual and he was very sleepy. Around 8.00pm the ambulance arrived and once we got past the unhelpful triage nurse who would not let me stay with him and was then shouting at him to tell her his name and date of birth which he has been unable to do for the past three years the rest of the staff were very kind. A nurse said he would catheterise but called me in to say he could not do this as the catheter got stuck and he did not want to push any more as there was blood on the end. A doctor then tried,less gently and lots of bright blood came up the catheter. A urologist tried , again only got blood. THey said they would call the consultant as it could not be left as the bladder would burst. Ultrasound revealed a blockage at the entrance to the bladder. They were talking about an emergency procedure to go in through the abdomen to drain the bladder as otherwise it would burst. Throughout all this my husband did not complain of pain save when then were forcing the catheter in and drawing blood. I found myself having to sit down before I fell down. The urologist returned having spoken to the consultant and brought a different catheter with a bend on the end to try. He told me he did not expect to succeed, and this was evident because when he did and there was quite a lot of blood followed by urine he had nothing to catch it in.
    They checked the urine for infection which was clear and then talked of the possibility of an enlarged prostate. We were sent home with the catheter, arriving back by ambulance at 3.51am, and this now has to stay in place until we can get a urology appointment which probably will not be until after Christmas. Much to my surprise my husband is coping well with the catheter.
    Has anyone else had experience of caring for someone in a similar situation and have you any tips to pass on? One difficulty is that he now seems to have a problem with opening his bowels although I sit him on the loo regularly. He is eating and drinking OK and seems quite bright and his mobility has improved a bit.
    I am trying prune juice which has worked in the past and the pharmacist suggested lactulose which he says make take three days to work.
    People tell me urinary retention is quite painful so I find it quite worrying that he did not show this.
    Any ideas or advice would be welcome
    Tre
     
  2. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi there
    That sounds an awful experience for both of you to go through. The only tips I have picked up are to change the leg that the bag is attached to fairly regularly. I've also discovered recently a sort of pouch made from dressing type fabric that you can pop the leg bag in so that the plastic is not touching the skin directly and so is less irritating. It goes over the leg like a kind of knee support would but has a pocket on one side for the bag to sit in.
    make sure it is draining regularly and if there seems to be no flow, call district nurse asap or 111 or palliative number- whatever you use in case it is by passing which can be painful so soonest spotted the better.
     
  3. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I had never thought of changing the leg it is attached to but I am sure it is a good idea.Thank you
    Tre
     
  4. Beate

    Beate Registered User

    May 21, 2014
    11,711
    Female
    London
    Can you try and get an urgent referral to the Continence Service? Both for catheter management and possible medication. We were prescribed Tamsulosin which improves urination with an enlarged prostate by relaxing the muscles.

    We get Fybogel on prescription for constipation.
     
  5. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    This is really useful. I have contact with the continence service regarding pads and bed pads due to accidents which they have provided but I did not realise I could approach them for advice regarding catheter management. I will certainly try this. Thank you
    Tre
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hi Tre
    This sounds such an awful experience for you both. I too am in Herts and we have a very good district nurse service (through our GP) and they might able to give you some help. The continence nurse that we had was also very good and it is possible to get an urgent appointment - particularly if you stress your husband's vulnerability and the bleeding etc.

    Take care xx
     
  7. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Very sorry you and your poor husband had such an awful time at the hospital Tre, you must have been so upset.. My husband has had a catheter for a month now for the same reason, and is also on tamsulosin. The hospital said the District Nurse would call when he was discharged from hospital but it took 6 days of phoning before they came. The hospital had discharged him without any equipment and I had no idea what to do. When the DN did come they were very helpful though. Do you have spare bags and night bags? The leg bag needs to be changed every week, but you probably know that. The catheter also has to be changed every 12 weeks.

    Thanks for the tip about changing the leg Selina, nobody has told me that, in fact I had the Nurse in yesterday because the catheter was pulling and causing swelling and bleeding. She put another one of those sticky patches on and moved it up the leg but it was the same leg, I think it might help to change it.

    I think you should be registered with the District Nurses so that you can ask for help if there are any problems with the catheter. If you aren't then probably you should contact your GP surgery. Hope you get the help you need very soon.
     
  8. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    157
    East Yorkshire
    My dad has had a catheter for 18 months now due to urine retention and an enlarged prostate. We use something called an aqua sleeve which sounds like the stockingette which someone else described. The rubber of the elastic which attached the bag to dad's leg brought him out in sores and the netting sleeve helps prevent this. My top tips would be to ensure your husband has something to occupy his hands to prevent him from pulling at the catheter and also ensure the point of insertion is kept scrupulously clean to prevent infection. Keep an eye out for any behavioural changes too as this might be a sign of an infection. Get his urine tested ASAP if you suspect there's a problem even if that means calling the district nurse in the middle of the night. Time is of the essence with UTIs. Have a look at the Alzheimer's Society fact sheet about UTIs too as that tells you what to look out for if there's an infection. It might be worth keeping a diary of his fluid intake and output too. We did that for a while until we were sure everything was ok. It sounds gross, but become familiar with the look and smell of his urine as that's also a good indicator of infection. I'm sorry to harp on about infections but believe me, they are best avoided. Best of luck with it all, you'll be an expert in no time :)
     
  9. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Thanks everyone for all your helpful comments. I am going to contact the district nurse team but could not do so today as whilst David was at daycare I had promised to take my 87 year old dad to lunch, a 50 mile round trip, to see some of his brothers-in-law and sisters-in-law which he always looks forward too. Also I had my 18 month grandson for the day so I knew there was no point phoning today as they would just miss me if they called back. I will do it on Monday and thanks to the pointers you have given I have a list of questions to ask.
    When I got back there was a message from the physio and another from his key worker at the daycare. I panicked thinking something had gone wrong but she advised that she had exactly the same difficulty as I had in contacting the wheelchair service who were supposed to be modifying David's wheelchair months back but it has not progressed. She wanted to make a complaint about the service (or lack of) and wanted to check I was OK with this. I am glad she is trying to progress this for me as I just do not have the energy. They pretend that they cannot answer your call on the only number provided because they are all busy but basically they never answer and you always have to leave a message. The call is inevitably returned when I am transferring David from his wheelchair, feeding him his lunch or taking him to the toilet. I feel really sad that their priority is to call only when it is convenient to them without regard for the situation we find ourselves in as carers. If you do actually manage to speak to someone dialling 1471 at the end of the call gives the message number with held.
    Ok rant over. At least you TPers all listen
    Tre
     
  10. nita

    nita Registered User

    Dec 30, 2011
    1,802
    Female
    Essex
    Here, we can contact the district nurse liaison team any time, night time or weekends, if that is helpful. But I have a feeling that the GP referred us to them in the first place. So many things going on, I forget what sequence they happened in!

    I can understand your frustration with the wheelchair service. I have always been able to get through to ours in the past when needed. I am glad the physio is making a complaint about it. I presume they come under the local council?
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Yes Hertfordshire District or community nurses can be contacted any time and they accept self referrals too - they are part of the urgent care team
     
  12. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    I suppose I always tend to think we are not in a bad enough situation to push to the front of the queue or to get someone here at weekends. we are already known to the integrated care team which includes the district nurse. I always feel very mindful that David has me to care for him and speak up for him and I worry about those poor souls who are essentially on their own or with geographically remote or inactive family. I am aware those who shout loudest get the help but feel uncomfortable about doing this except in an absolute crisis because I worry about diverting care away from those who have no-one to speak up for them
    Tre
     
  13. Beate

    Beate Registered User

    May 21, 2014
    11,711
    Female
    London
    Whether you speak up for yourself and hubby or not has no bearing on the care others receive or don't receive so don't feel you have to join them in getting no support! Shout away, you deserve to be heard.
     
  14. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    157
    East Yorkshire
    You say that David is in the severe stages, I say get all the help you can. You both deserve help and support. You sound like a kind soul who is always thinking of others and that's lovely but you must think of yourselves first :)
     
  15. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Yes he is in the severe stage. He is blind, sometimes he can stand and walk a few steps if I lead him holding both hands, sometimes he is stiff tense and immobile. He has Parkinsons type symptoms as well and a purplish area on his buttocks which needs to be creamed for pressure sore prevention. The physio wants me to get him to stand every hour but this is mostly an impossible ask unless he is having a really good day. He needs to be fed and each meal takes one and a half hours as he chews everything, water included, for a very long time. He has scored nothing on the MMSE for about three years and has very little language left only managing single words if he has a really good day. He has a nasty cough which is always worse when he first gets up in the morning and whilst he is distracted by coughing he cannot concentrate on anything else so washing and dressing take a very long time.
    I will try to speak to the district nurses tomorrow. I am a bit put off as the one who came a couple of weeks ago turned up without notice halfway through my giving him his breakfast on a day care day and because of this I did not have time to finish giving him his breakfast or get him transferred to his wheelchair before the ambulance arrived to take him to daycare. It was also all a bit rushed. She did send the physio out though and she is going to bring a standing aid, rotostand I think, to see if it would assist me in getting him standing, but it needs to be something I could use on my own as other than when he is at daycare (four days per week) I have a 2 hour sit from Crossroads but manage everything else on my own.
    Tre
     
  16. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    157
    East Yorkshire
    Oh bless you Tre. Reading your last post makes me think of my dad. Feeding him a puréed meal takes forever. I am concerned about pressure sores too as dad has been bedridden for several weeks now. Yes, the district nurses do just turn up unannounced which is a bit of a nuisance sometimes. One of ours turned up at 4pm to change dad's catheter one time (when he was still at home and we were still able to enjoy a trip to the garden centre) and he was just dozing off in his chair. The last thing he needed was to be hauled off to the bedroom on wobbly legs to have a painful procedure done. I heard him shout out and it broke my heart. I appreciate they can't always make appointments but a bit of prior warning might be nice! How is David getting on with his catheter? Is it being problem free?
     
  17. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Up until today I was quite pleased at how he just seemed to be ignoring it, but today it seems to be bothering him on the top elastic. I have tried to move it a bit to make it more comfortable.
    I have asked the district nurse to come re catheter care. We will have it at least until 13 Jan 2016 which is when he has his appointment.
    Another problem is that he has now not opened his bowels for a week. I have been giving him Lactulose as recommended by the pharmacist without result. District Nurse says to talk to GP re movicol but he may need an enema. I hope it will right itself .
    Tre
     
  18. CeliaThePoet

    CeliaThePoet Registered User

    Dec 7, 2013
    614
    Buffalo, NY, USA
    I have read on here that warm prune juice works a treat even when medicines have not.
     
  19. DMac

    DMac Registered User

    Jul 18, 2015
    537
    Female
    Surrey, UK
    Tre, my father-in-law, also with dementia, has had an indwelling catheter for nearly 2 years now, due to inability to urinate following bowel cancer surgery. So far, touch wood, we have been quite lucky and he has only experienced very few episodes of UTI. My sister-in-law and I have had to learn procedures for catheter care as we have gone along. The district nurses and his reablement team were helpful in showing us techniques, e.g. for leg bag changes. The main thing is to keep all areas scrupulously clean, to minimise the risk of UTI. We change his bags weekly. We use latex gloves whenever changing bags or touching the bag or tubing area for any reason. He is prone to thrush, so the head of the penis needs to be kept clean in particular. The district nurses change his catheter every twelve weeks.

    That said, he has not been completely free of UTIs - he had one quite recently. It's an unfortunate fact that no matter how much care we take, he can still touch himself with dirty hands and we can't stop that happening. Things to look out for are unpleasant-smelling urine, and blood in the catheter outflow tube. Whenever I put him to bed, I wait half an hour or so after he has settled, to check that the urine is flowing through the tubing. If I'm ever in any doubt, I call the district nurses.

    I hope this helps in some way. I just wanted to let you know that it is possible to manage with a long-term catheter, but it's good to be aware of the problems that can happen. I hope your district nurses will be helpful to you when you see them next. Best wishes. x
     
  20. tre

    tre Registered User

    Sep 23, 2008
    1,353
    Herts
    Thank you everyone. I already am using the prune juice as the dietician recommended this but nothing has worked yet. I think the fact that he is much less mobile does not help but he is so unsteady and if he falls I have to call the paramedics to help get him up . The last time this happened he had an extremely uncomfortable three hour wait so rather than put him through that again I am accepting the reduced mobility. I am trying to stand him in front of his chair every hour just to change his position as this is safer as if he wobbles I can nudge him back to the safety of the armchair.
    I am encouraged that others have managed with a catheter for an extended time. We have an appointment for him with the urology dept in mid January which is at one of the least accessible with regards to finding a disabled parking space that they could have offered. I need to be able to open the car door fully to get him in and out so must have the extra width of a disabled space. However, I am going to stick with it as the letter says you may be sent to other parts of the hospital for test and scans and the other two more accessible clinics do not have the other departments on site.
    I have now noticed that there is some leakage of blood, not within the catheter but coming along the outside of the catheter between the catheter and the urethra. I did suspect this before but when I had him sitting on the loo in hope of a bowel movement a drop of blood was quite visible on the white porcelain so I wiped the outside of the catheter where it exits the penis and it was blood. I am hoping for a response from the GP or District Nurse today -if this does not happen I will chase them
    Tre
     

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