1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August 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.

  1. marionq

    marionq Registered User

    Apr 24, 2013
    5,752
    Female
    Scotland
    And now for some good news!

    The last two nights bed completely dry even though the nappy pad was soaking. This was without getting my husband up to the toilet in the middle of the night. The pjs @Izzy recommended which zip up the back have been a great success. They are expensive at £47 a set so I just bought one to try it out but if this continues I will buy another set. John is a slim fellow so a size 38” is a good loose fit and he cannot get near the pad to move it or fidget with anything else so I’m really pleased. Next week though he goes into respite for a week and I will give them ordinary pjs in case they lose these.

    Thanks for all your tips. I’m a happier person for them.
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,237
    Female
    Dundee
    I’m so pleased about that Marion!!
     
  3. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    371
    Female
    Basingstoke, Hampshire
    That is good news. We aren't at that stage yet. So I need to store all this information so I don't have to learn the hard way.
     
  4. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    387
    Female
    High Peak
    Brilliant news. It must be such a relief to find a solution to this difficult problem. Long may it continue!
     
  5. Maggiejigs

    Maggiejigs Registered User

    Apr 22, 2018
    29
    Hi Lawson58 - my husband diagnosed with FTD Dec 2018 and also had treatment for prostate cancer in Aug 2018 (Brachytherapy). He was fine before the op toilet wise but have had no end of problems with double incontinence since. The faecal incontinence has stopped thankfully but now he is wetting the bed - not every night, but most - and this is despite going to loo before bed and getting up twice in the night. I am seeing a urologist on Friday and would be interested to know what type of surgery your husband had and what is the name of the medication that he takes. Many thanks.
     
  6. Lawson58

    Lawson58 Registered User

    It's about five years since he had the surgery and it went by the initials TURP which I think was a laser cleanout of the prostate and that relieved the pressure on the bladder system. It took ages before he had the catheter removed but has had no problems since.

    He was prescribed two medications, oxybutynin which assists in bladder control and amitriptyline, which was originally developed as an antidepressant but is now used for other things.

    Probably not much help as his condition was very different to what your husband has but I hope the urologist can help you.
     
  7. Maggiejigs

    Maggiejigs Registered User

    Apr 22, 2018
    29
    Thank you Lawson58 for getting back to me - may help, may not but will discuss with urologist. Thanks again.
     
  8. Casbow

    Casbow Registered User

    Sep 3, 2013
    988
    Colchester
    My husband went into a nursing home 2 years ago. Because he was doubly incontinent and would not let me help him. But before that he wet so much at night I could not believe it. I ended up with a mattress protector. Duvet protector. Pillowslip protector. Every morning I had to strip everything off of the bed to be washed. (I did not iron them.!) We had pullups to start. Then I asked the incontinence service to help. After a couple of months, the pull -ups were stopped, as being too expensive. I was offered the baby type pads with the sticky tapes on both sides. and that was where the trouble really began. How can you stick the tape one side and then try to hold it all in place whilst you fix the tape the other side.? Well, you can't without another pair of hands. My husband was not going to help in any way with this problem, as he was so upset that he needed this kind of help. It is so difficult. My husband,s journey is now over. I feel for you and the problems you have. Love to you.xx
     
  9. marionq

    marionq Registered User

    Apr 24, 2013
    5,752
    Female
    Scotland
    @Casbow it is amazing how we develop strategies for this kind of thing. As above I have tried every kind of pad and now pay for the nappy type as well as getting the high absorbency type from the incontinence service. Each night we have a routine of toilet then hand washing then teeth cleaning. When he is at the sink cleaning his teeth I step behind him and slip the nappy on him sticking one side and propping the other side with my body while I grab the other tabs and stick them. I have to be quick before he gets a chance to object.

    Once on the next step is to get on his one piece pjs which zip up the back and so far that is going well. As he cannot get at the pad it stays in place and although soaked the bed stays dry.

    Tomorrow though a new mattress is being delivered and I will start by enclosing it in a waterproof cover, mattress protector on top and kylie sheet on top of the ordinary sheet. We’ll see if that’s enough!
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,237
    Female
    Dundee
    @marionq - your strategy is exactly as mine was. That’s brought it right back.
     
  11. Lady M

    Lady M Registered User

    Sep 15, 2018
    276
    Female
    Essex
    Not a reply as such, simply seeking advice should anyone else had the same problem. In March OH was catheterised due to urine retention. This was at first a ideal solution, as he had of course been been in severe. pain and as now immobile , he is unable to get out of bed or chair . Apart from a few problems of getting used to things( and of course the increased risk of UTIs..) .now every night he his experiencing ‘overflow’..the bed and he are soaked!!
    Nurses simply say he must be lying on the Cather...but the night bag is filling up as well.....
    He still gets the urge when to pass urine and sometimes still get the pain as if retaining for to long?
    It seems likely that a pad made be needed over the catheter, defeating the purpose somewhat!
    Anyone had a similar occurrence or any suggestions as to what may be the root cause?
    Any help greatly appreciated!
    Thanks
     
  12. LizzieM

    LizzieM Registered User

    May 6, 2019
    23
    Hope it helps to share so.... OH PWD is catheterised and yes UTIs are a complete pain however if he wasn’t catheterised there’d be even more urine everywhere. I had to get double size nightbags as he’d fill his leg bag and then two ‘daisy-chained’ nightbags and still overflow- truly his production of urine overnight is prodigious! Worth getting the district nurse to check catheter balloon still inflated correctly- sometimes takes a while to settle. Also the urge to pee (despite catheter) never quite goes away but seems to be more tolerated - bladder spasms can be difficult as the bladder tries to expel a foreign object i.e. the catheter and its balloon but I found switching OH to decaf coffee really helps. If thigh strap isn’t high enough (stops catheter pipe pulling and thereby pulling inside on bladder) then that can be both painful and leaky, changing sides for leg bag and thereby which side OH is ‘dressed’ that day helps too. Always pad and always a kylie sheet under top sheet.
     
  13. LizzieM

    LizzieM Registered User

    May 6, 2019
    23
    Sorry - system seems to have lost half my response to you so continuing....
    You might think well why does he need all that with a catheter? Well if he didn’t have the catheter he’d have a lot more problems and I’d guess that if your OHs problem was retention then so would he - very painful.
    Does take a bit of getting used to though along with more boxes of kit (bags, pads etc), another set of appointments to change catheter, more UTIs, another thing to do when putting OH to bed, plus the dementia fairy loves to fiddle with the tap and leaves it open! (never my OH...).
    Just a thought, there are different materials for the catheter pipe and OH has considerably less discomfort and less leakage with softer pipe.
    It’s a pain but worth it on balance I think however still running the washing machine like mad as he’s now developed double incontinence - oh the joys....but that’s another story...
    Wishing you luck and support.
     

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