Should you always treat symptoms of UTI with antibiotics?

Discussion in 'I care for a person with dementia' started by totallyconfused, Jul 29, 2019.

  1. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    GP quite dismissive of us calling out the out of services doc twice-they tested urine, found traces of infections, blood the second time and gave antibiotics. She said they arent certain UTI as the urine wasnt sent to lab.

    Yet she has prescribed antibiotices before sending urine to lab. She isnt very helpful to talk to.

    She doesnt do home visits, it can be hard to get the urine to the GP, especially in time to make the courier service that takes it to the lab.Out of services doctors have been great with advice, very nice when they come out, understanding.
  2. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    South Northwest
    Having struggled to gather a sample a 5am, then fast-walked down the the surgery and back to delivery it at 8:30 this morning while Mum snoozed, I can sympathise with the whole stress and faff of the UTI cycle. Serves me right for being somewhat smug about managing to keep Mum free of infections for over a year.

    I've no experience of UTIs in a healthy individual, but you'd think that if enough water was drunk, cranberry pills swallowed, and over the counter assistance tried, infections could be minimised while the body tried to sort things out itself. But those ideal circumstances don't often exist with dementia, so I think we're stuck with the antibiotics and thorough testing. But it would be nice if there was some kind of district nurse tasking for this kind of thing, and you could just ring up to be added to their circuit. I mean, it's not as if it's a rare problem among the expanding dementia/caring community.

    I guess it's the same old story... you can only stretch resources so far, so we -- and they, I'm sure -- muddle along as best we can.

    I'm at least lucky that our doctor will do home visits if necessary, and they've always been understanding. I hate 'wasting' their time when Mum's mobile but hard to shoehorn into appointments even when she's feeling well, but I suppose it's a stitch in time thing... better to waste a bit of time now than a lot of time later. But in your position, with no visit possible, I wouldn't be worrying too much about using the out of hours service. It's not ideal, but what the heck is?

    I can understand why your doctor might be frustrated though. Without a sample being tested properly it's a bit of a lottery knowing whether the right medication's being used.

    Nothing's simple though, is it! And when so much of caring life is already a struggle, at times like that you need all the help you can get.
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    I suppose it's possible that a mild infection could be cleared with adequate flushing.

    The problem is that in a person with dementia an infection can get a difficult to clear grip quickly because of an impaired immune system and the infection can play havoc with the dementia. I would always insist on antibiotics for my wife.
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
  5. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    Auckland...... New Zealand
    Without a doubt UTI’s have made my Mums Alzheimers progress to the point that in just 18 mnths shes gone from mid stage to end stage. As Mums care home have always had great difficulty in obtaining urine samples, often they had to judge it in sudden change of behaviour, aggression, refusing food, fluids & meds.
    March last year, Mum was admitted to hospital as she had resulting delirium. They caught her at a good moment ( nurse & dr uniforms) and obtained a sample.
    Yes a UTI.
    Mum already has compromised immune system with chronic lymphocytic leukemia.
    This was potentially Mums 3rd UTI in 10 mnths.
    I asked the Dr about a daily low dose antibiotic.
    They said No unless Mum had more than 4 in a year plus they didnt want her building resistance to antibiotics.
    Within 6 mnths Mum had another 2 UTI’s, one tested, one suspected.
    By Dec last year Mum lost all mobility and was moved from Dementia to Hospital level.
    GP put her on a daily dose of Trimethroprim.
    Although Mum has declined, she has had no UTI’s and is also the most settled and calm I have seen in a very long time.

    Someone here once also suggested DMannose as a natural UTI preventative.
  6. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    After much reading on here, I learnt to recognise when mum had a UTI brewing. I think she had about eight in six months at one time :eek: This is what I did ... it was fun @totallyconfused :D

    The first time. I wasn’t sure, but put on a bravado ... after that ... I just went for it

    Up early, handed mum the tube and told her “pee in that”. Direct. No discussion. Just I need you to do it. Fortunately she did

    Stuck it in a bag, left it out of the way. Got breakfast sorted. Mum settled with a bowl of porridge and a cup of tea, I legged it out the door (with the offending bag). I parked illegally in the church, stuck the blue badge up and hopped next door to the surgery. I’m figuring no one is going to be going to church before 9am :D

    The receptionist :rolleyes: Dragoness guarding the gateway. We’ve all met her :rolleyes: So it began

    I don’t remember who told me, probably How Bizarre (I learnt so much from @Ann Mac I can never say “thank you” enough). Anyway, someone said about DIY’ing the test, so that was my plan

    Holding a bottle of pee, in a non sealed bag, is a pretty good bomb. It has an amazing reaction value. Wave it about a bit and focus can be achieved pretty darn quick :D I found that out myself

    So in I march, bottle swinging and ask for a urine test form. :eek: Receptionist looks like she thinks I’m going to spray her, but give her her due, she tried to guard her fortress. I know I have zero time to get back to Mum, so I’m not playing nice

    “I want this tested”

    Receptionist starts blabbering about the need to see a GP etc. I laugh. Like there is an appointment this week .. in .the morning .. when I can get mum there

    I believe you have a form I can fill in (on subsequent visits, that became “can I just have the form please”)

    In the box where it ask why the test is requested I put “UTI suspected - not good with Alzheimers”, or “Alzheimer’s exasperated by UTI” or a variation ...

    Each time the receptionist was less than pleased. I just smiled. Said thank you and legged it home to mum. I mostly managed it as she was finishing her cup of tea ;)

    Each and every time, I got a call from a GP at the surgery. The conversation went something like this (every single time) ..

    GP - I understand you requested a urine sample be tested
    Me - That’s right
    GP - Why did you think you could request such a test without an appointment?
    Me - My mum has Alzheimers... UTI’s cause issues
    GP - Hmmmm ... well ... she should really be seen. A doctor should organise a test .. if one is needed
    Me - Ok
    Long pause
    I wait
    GP - Your mum has a UTI
    Me - Thought so
    GP - I’ll arrange AB’s
    Me - Good. Will you get them delivered please. I can’t get out to collect :rolleyes::D:p

    It’s a right pain, but after a while, the surgery just got bored of arguing and being proved wrong. They gave in and tested
  7. Moggymad

    Moggymad Registered User

    May 12, 2017
    My mums latest urine test from the hospital same back negative for infection. The dipstick done by the care home showed sign of blood & the GP must have found something as they issued antibiotics in lieu of hospital results. The sample according to the carer was cloudy & strong smelling usually an indicator of infection. This is the third lot of antibiotics in about 2 months. I think mum is deteriorating noticeably every week & is tired all of the time. How much is due to uti (?) or down to progression of dementia I don't know.
  8. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    Mid Lincs
    My OH had 7 UTIs in 16 weeks first at home the other 6 in hospital. I can't get a sample now because he's catherrised as he was retaining urine that was thought to be the problem and out of hours have said there's not much point in them taking a sample either because it will always show as contaminated. I am now very good at recognising the first signs of an infection and either ring 111 for out of hours or straight on the phone to our surgery. I have to say both have been excellent in listening to me and prescribing ABs.
    The UTIs have taken my OHs mobility and much of his speech. He knows what he wants to say but struggles to get the words out tho' he can make himself understood in the main.
  9. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Your post made me laugh!The receptionist!She wouldn't even touch the bag I had the urine sample in. Now when I go in, she opens an envelope and I place the sample in there. She questions me about it, was I told to bring it in etc. I say no, I think there is a chance of infection, I want it tested.

    Last time I brought her down, we waited an hour to be seen. When I leave a message, I have to tell the whole story to the receptionist and then the GP might call back that night around 8pm usually or sometimes it could be days and you have to ring and go through it all again.
  10. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    Laughter gets you through it @totallyconfused :D

    The most fun was trying to get sample bottles from the receptionist :rolleyes: She just didn’t want to give me a spare to have at home ready. So, I told her I couldn’t guarantee the bottles I had handy wouId have good fitting lids. Considering how they want your inside leg measurements just to get an appointment, I was fascinated to find a little bit of wee scares the pants off them :rolleyes:

    I quickly gave up on bothering to phone the GP for suspected UTI. Complete waste of time. They call back after the courier has been for the day. Tell you to call in the morning, for an appointment. There are no appointments. So it goes on
  11. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    My Mum who lives with me gets regular UTIs and is doublely incontinent so it's impossible to take a sample. However, I know the signs and so have in the past, phoned and spoken with a doctor who has prescribed a general A/B. Recently they have started to only give her 3 days worth due to cut backs, and this is just not clearing them up. It's ridiculous.
  12. Louise7

    Louise7 Registered User

    Mar 25, 2016
    A 3 day course of antibiotics may not be due to cutbacks - some types are only intended to be given for 3 days. If they don't clear up the infection within that timeframe then a different type of antibiotic may be needed.
  13. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    Had out of service doctor out to house. Blood in urine but he said its not really an infection because it didn't change to purple on the stick. He said to follow up with the GP.

    Was also worried about a chesty cough she had during the night but during today was fine. her chest was clear.

    She has slept an average of 2 hours a night, sometimes less, over the last week.Her language has gone downhill rapidly(was declining anyway but very fast this week), she doesn't seem to recognise things or people and thinks there are men in her room. Shes had a terrible week, as have we!So tired.

    We had taken her off sedatives but doc said its ok to give her one tonight so she might sleep.

    Not a fan of them as she is dazed, at risk of falls, hard to get her to the toilet.Her myoclonic jerks are worse on them also.GP doesnt believe it but the jerks pretty much disappeared while off the sedatives.

    Gonna try and contact the consultant if possible.
  14. totallyconfused

    totallyconfused Registered User

    Apr 18, 2016
    GP said no trace of blood or any infection. I said out of services doc found traces of blood the day before and said to follow up to find out where blood was coming from. She said his test stick might have been contaminated(he took out a new stick from the box).

    She went downhill so fast we thought she must have infection. Im not sure about her contaminated excuse.

    She has also dismissed out of services docs before and said two uti diangosed with anti bioticcs dont count as they werent sent to lab.

    So do we just not use the out of services doc anymore?its so confusing.

    Also in the conversatino she repeatd the need for my mother to go into respite. One or two weeks away wont solve the problem.We are gonna go to consultant for advice.
  15. Trekker

    Trekker Registered User

    Jun 18, 2019
    Brilliant! Well done.
  16. AliceA

    AliceA Registered User

    May 27, 2016
    Just how do you manage to get to consultant, ours diagnosed then that was it! X
  17. Trekker

    Trekker Registered User

    Jun 18, 2019
    There has to be some change that, maybe, they can medicate. My mother became psychotic again a while back, after having become increasingly agitated for about 2 months with nothing like a UTI to explain it. She had a previous psychotic episode that responded to risperidone but this was stopped after 12 weeks - in accordance with guidance issued to GPs, although it turns out is not appropriate in someone with psychosis as part of their dementia. I suggested a few times to her very nice GP that something was definitely brewing but every time he saw her she presented well aka hosting and he said he couldn’t justify starting it. I requested a review by the psychiatrist and 7 weeks into her deterioration he saw her and we agreed trying risperidone, on the understanding that while it can be effective it also increases the risk of stroke and death. I told him that my mother, could you contribute to the discussion, would far rather die than continue in this distressed state, ie it was a risk taking. It took 10 days for the medication to be delivered ready for her to take, the same day she fell and was taken to hospital, psychotic once more. All of which is a long way of saying, if you want a psychiatric review, ask/insist that the GP make a referral to the local mental health team. The GP may not think it will help but with the best will in the world they can be wrong.
  18. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    East Sussex
    I was shaking in my boots the first time, but after I was proved right ... I got braver. In the end it was just what I had to do :rolleyes:
  19. Palerider

    Palerider Registered User

    Aug 9, 2015
    North West
  20. AliceA

    AliceA Registered User

    May 27, 2016
    Thank you all. The advice is useful. When a new GP took over our care she wanted a review by memory clinic but this was refused as the condition was progressive.
    I was not too concerned myself. We were managing to deal with things as they occurred.
    I suspect that it is the GPs nature to like things cut dried and labelled. Life is messier than that!

    I am going through, as most of of us are as Carers, an exhaustive time just caring.
    My lifestyle is not as healthy as it was, physically. I can no longer get out much to exercise for a start.
    Over 24 hours I sleep enough but it can be disturbed. My husband disturbs me! Not worry! When I am concerned, I do what I can but I also know little is in our control.
    The GP has said three times she thinks I am depressed, she has offered a serotonin re uptaker blocker.

    Sleep is important as are my dreams, I remember these. I am not suicidal, I am not racked with guilt. I find meaning in every situation, I do not feel depressed, I still find joy in life, pleasure in the things I do.
    Yes, my muscles do ache these days if I lift or carry something heavy, I wake when needed, I slept through a mega storm last week. I am gaining weight but lack of exercise is the issue, I do not drive so walked everywhere. One of the descriptions of depression is anger turned inwards. I really can not see how that applies. We are both a grand age, we have lived interesting lives I am grateful for that.
    my work was and still is counselling although now informal and ad hoc. I am very aware that we fool ourselves.
    Try as I might I do not think I am depressed. Have other Carers been offered such medications?
    Carers Cosh? We need action politically, support, transport etc. etc.
    Yes, it is fairly early but I have always been a morning person. I have had seven hours! My husband is in hospital so no disturbance!

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