UTIs, seizures and hospital

Discussion in 'I care for a person with dementia' started by canary, Oct 27, 2019.

  1. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    Dear @canary, how are things? I hope the district nurse turned up and explained the new catheter and that your husband is doing well with it.
    Congratulations on the new grandson. I hope you are getting a chance for some good cuddles.
    Don’t forget to look after you {{{hugs}}}.
  2. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Hi, Canary
    I hope that you have been shown what to do with the new catheter . Congratulations too on the arrival of your new grandson, something to look forward to after all you have been through recently. I am sure you will enjoy spending time with him x
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    How are things @canary ?
    Hope you are feeling a bit better x
  4. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    Just popping in and wondering how you are?
  5. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I think its time I took a deep breath and fill you all in on what has happened since I last posted. Some of you will have noticed that I dissappeared for a while and although I have returned and made one or two posts, I havent been able to articulate what happened.

    When I last posted OH was back from hospital with an indwelling catheter, a bag of bits and no written instructions or paperwork of any sort. I was assured that OH had been shown what to do and knew exactly how to deal with it..............
    What I hadnt mentioned was that on that first night back, although there was no little pool of wee, the catheter had become detached from the night bag to the leg bag (it was wound round his torso) so that the bedding was a bit damp and I had to wash it all.
    The district nurse was supposed to come, but was a no show, so I had to fit everything together again that night.
    OH has a condition called nocturnal polyurea, which means that he only passes about 200 - 400 cc of urine during the day and all the rest (about 1.5 - 2 litres) during the night, so I had to make sure that I used a large night bag.
    The following morning I took him up a cup of coffee in the morning and, as I opened the door, the stench hit me. There wasnt a single drop of urine in the night bag - the catheter had become detached again, obviously very early on, and everything (nearly 2 litres) had gone into the bed. The bed was sodden and so were the pillows and duvet. OH needed a shower, but I had no bath board and didnt know whether I had to remove the leg bag and, if so, how to put it back together again. I put OH in a dressing gown and sat him down while I tried to work out what to do. I stripped the bed and put everything on to wash and then tried to find out who could offer me some advice about what to do as it was obvious that OH would not be able to sleep in that bed that night. After several phone calls I eventually got through to the emergency number and got the most unhelpful person known to man on the other end.
    I asked what I was doing wrong and she said that I hadnt been doing anything wrong, but when I asked whether you could get connections that clipped or screwed together she replied - no you push it in and there isnt anything else. When I pointed out that if you just pushed it in that meant that it could be just pulled out she said I had to stop him doing that !!!!!! I was getting a bit hysterical by then and said I couldnt do this and there was nowhere for him to sleep that night, so she suggested I put a blanket on the bed!!!!!!!!!

    At this point the washing cycle finished, so I opened the washing machine door to discover that all the bedding still smelt of urine, the bed smelt of urine, OH smelt of urine - in fact the whole house smelt of urine and there didnt seem to be anything I could do. It felt like I had crashed into a brick wall and I basically broke. Fortunately, at that point my cleaner (who I get through Age UK) arrived and found me in a distrought state. She phoned through to the office and they called the GP.

    After that everything is a bit hazy. The GP got OH re-admitted and someone contacted the children, who between them took control. They booked me in for 3 nights at a travel lodge and sorted out the house. They ditched the bed, mattress, duvet and pillows and bought new ones and cleaned the whole house, so there was no lingering smell of urine when I came back. They researched care homes and OH has gone into one for a months respite.
    I have started anti-depressants and the children found me a counsellor. There have been so many people that I have had to talk to about me and also about OH. The antidepressants havent yet "kicked in" and Im finding night time particularly hard.

    I have no idea what is going to happen in the future. The children want OH to move into residential care, but we wont be self-funded and I honestly cant see that happening. Im just taking it a day at a time.
  6. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    South East
    Oh @canary , what a time of it you have had . Sending hugs and support and strength . You are such a tower of support and a mine of information for everyone on here , hope you can draw the same support back. Thinking of you . Take good care of yourself . X
  7. reedysue

    reedysue Registered User

    Nov 4, 2014
    @canary the situation you found yourself In is absolutely disgraceful, I'm glad that your children stepped in to help.
    Sending you a hug x
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    I'm so sorry to hear that! Thank heaven for your children and their abilities to sort out things. One step at a time.((((hugs)))
  9. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    oh @canary, thank goodness for children that stepped into a breach and a GP that listened. Hope care is sorted on a permanent basis for your OH. It's not fair on either of you to try and manage things at home anymore. {{{hugs}}}
  10. Jale

    Jale Registered User

    Jul 9, 2018
    Sending many hugs and best wishes canary
  11. kindred

    kindred Registered User

    Apr 8, 2018
    Sweetheart, you are such a good, kind supportive lady to us all. It is time that residential care is considered seriously, even if it does mean needing LA funding. They cannot sell your house with you in it either, it has to be disregarded. This kind of incident is too much for you to deal with. I am so sorry. all fellow feeling and love, Kindred.
  12. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    I’m so sorry to read your update @canary. I hope the tablets kick in soon so you get some rest. My thoughts are with you.
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    So sorry @canary that this has happened but thank goodness that your children have stepped in and help you. We all know that there is a breaking point when we will no longer be able to cope and I think you have reached yours.

    Take the break, goodness knows you need it and let your children help you a while longer. Hopefully something will be worked out for your OH even if it is permanent care. It's very sad but there is only so much that we can do and then it becomes impossible. Give the antidepressants a chance.
  14. Juliematch

    Juliematch Registered User

    Jun 24, 2017
    So,so sorry canary that you have had such an awful time.Those of us that have had carers breakdown know what a harrowing ,upsetting and draining experience it is.Its the losing control of the situation that is the most distressing.The tablets will help ,I can assure you..It may take a week or two.Its time now to think of yourself.Thank goodness your children have stepped in and I hope they will help you in the future. Please give yourself time to heal.You have always given such good advice to others and I’m sure other members will join me in wishing you well. Virtual hugs from me.Take care.
  15. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    Mid Lincs
    My OH has detached his night bag twice and like yours passes 90% of his urine at night. I looked and looked and looked for some sort of clip that wasn't easy to open to that goes over the bag connection but as you say there isn't one. Perhaps some enterprising company needs to look at that. Fortunately OH has an air mattress with a waterproof cover so it was a simple case of just using antibac wipes.
    I'm sorry you've been through such a difficult time canary. Hopefully your equilibrium will return whilst your OH is in respite.

    Congratulations on your new grandson.
  16. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Dear Canary
    I am so very sorry to hear what you have just been through. Thank goodness that your GP and children sorted things out on a temporary basis. It seems obvious to everyone that you have struggled on, but that the time has come for permanent care as your OH needs are too great for him to be cared for at home. Sending hugs and hoping this gets resolved before respite is over xx
  17. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Oh you are all so lovely. I really did need all your support and encouragement.
    Yes the children have been wonderful, but they have gone home now.

    Im hoping that OH can come home, but only if I can solve the overnight catheter problem. Actually, he has not had any problems with it coming adrift in the care home, so I think I must have been doing something wrong. When it is nearer him coming home Im going to go there in the evening and find out exactly what they do to get him ready for bed.
    There will also have to be changes at home. The time has come to start implementing his (and my) needs. I shall contact SS for an updated needs assessment and get carers in to help with showering OH and get him referred to a day centre. Him being under 65yrs old and not having a diagnosis bars him from a lot of places, but there is one place that he was offered last year, but he refused. This time, Im insisting!
  18. TNJJ

    TNJJ Registered User

    May 7, 2019
    Hi .With an overnight bag you need a stand.Did you get one? It hangs via the holes to stand upright. If you didn’t and it is lying on the floor it can pull away.

    To connect a night bag to daybag you need a small connecting tube which fits on the tube where the urine comes out and that will connect day to night bag. I’m not sure if this helps.

    Always make sure that the “tap” which empties the bag out is across completely so it runs into the night bag.If it is the other way it will block the urine and none will go into the night bag.It will just overflow into the day bag,which will burst.
  19. Starbright

    Starbright Registered User

    Apr 8, 2018
    Hi @canary ..oh I’m so sorry to hear all this and I hope your feeling a little better now....my oh had a catheter for a long time a few years ago and as @TNJJ says there’s a little clip that has to be fully over so as not to leak ..I found that out after my own trial and error. He’s had a catheter twice since for a short time. I did get used to it all as my Oh would have nothing to do with it.also the stand is so good to have.
    How wonderful for you that your children stepped up just when you needed them most.

    It’s time for you now while Oh is in respite ....so do please take care of yourself thinking of you (((((((Hugs))))))) A x
  20. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    ((((Hugs))))) @canary

    I hope you can find a solution.

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