No Idea How to Manage Today

Discussion in 'I care for a person with dementia' started by AdaC, Jun 1, 2019.

  1. AdaC

    AdaC New member

    Jun 1, 2019
    Most days, things go fine with mum. She's unable to do much without assistance (washing, dressing, using anything in the kitchen, walking far) but when she comes down with a UTI, I am finding her behaviour harder and harder to manage.

    Through her life, until she got dementia, she'd always be the ringleader and the organiser. I wouldn't call her a domineering mother, but I can tell she finds the concept of her daughter calling the shots very hard to swallow!

    She's finally settled in her chair and is sleeping soundly, after tears and insults (from her to me!) over the sort of trivial things that on a 'good' day, wouldn't merit the batting of an eyelid. I've never seen her so hard-hit by a UTI and the doc has prescribed Macro-BID for 3 days until the urine sample analysis comes back from the lab on Monday.

    One minute she says she's resigned to the fact that soon she will needs residential care; the next, she's clear that she wants to stay in her own home. It's the uncertainty that's so hard to take! I feel trapped in a limbo. I'm giving up my career in 4 weeks' time to spend more time with her and keeping everything crossed I can get Carer's Allowance, to keep up my NI contributions but sometimes, I just wonder how long it will all last.

    I know it's good for her that she has someone who she can treat like this and who just keeps coming back for more. More importantly, I know when she behaves like this, she's not really my mum - it's the UTI and dementia talking! The problem is, it really is affecting my health now and some days I am so terrified I'm going to snap and say something nasty back to her. It's all so avoidable (in theory) If she drank enough and if the carers made sure she was clean after going to the loo, maybe she wouldn't get so many infections. The reality is that she can't accept she needs help with wiping herself and insists on going to the loo herself - which I suppose gives her some independence.

    What do you do on days like this, when you are at the end of your tether?
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Welcome to Talking Point

    You step back and let professionals take over .

    The time may have come when your mother is unable to make a decision in her own best interests.

    Are you sure giving up your career at this stage is the best decision for you @AdaC?

    Your mother is as well today as she will ever be. If she continues to get frequent infections, each infection may have an adverse effect on her dementia.

    Maybe the time has come when you make the decisions for her.
  3. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I'm going to be blunt. Why is it good for your mum to have "someone who she can treat like this and who comes back for more"? What's the benefit for you? As others have said, you need to think very carefully about giving up your job for this scenario and this abuse. You need to take charge and make decisions for your mum ,often difficult ones. Your mum isn't independent, she needs help with toileting, however you might like to phrase it.
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #5 Shedrech, Jun 1, 2019
    Last edited: Jun 2, 2019
    Hello @AdaC
    and welcome to DTP
    I also would suggest you think carefully before setting aside an important part of your present and future ie work, wages and pension, social interaction, ability to do what you choose, when you choose - I did give up work, lived off Carer's Allowance and my savings … and it made a huge difference to my own financial, and therefore emotional, security .. I had a good relationship with my dad, and had paid off my mortgage so didn't have to move in with him ( he lived 10 mins walk away), but things were 'tight' for years … I didn't realise how much strain I was under until I was able to have a pension paid early and therefore some regular income and peace of mind

    do you have any support in place to take the pressure off you .. I hope your mum's care needs have been assessed by her Local Authority Adult Services and a care package in place ie home care visits, day care, respite ... as you mention Carer's Allowances, I guess your mum is already in receipt of Attendance Allowance and Council Tax exemption; the money really helps with funding care
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    South of the Border
    DO NOT give up your career - I did, and I have regretted it ever since. It has made me resent my OH so much. I and he would have been happier if I had kept my business.
    Do not make a martyr of yourself no matter how much you love your Mum.
    Being completely blunt - you do not have a Duty of Care for her.
    I have ruined my life by taking on a task that is too big for me - please, please do not do the same..........
    But do keep coming on here, there are so many lovely people who are happy to give you their view point, so look for more views than my own.
  6. tryingmybest

    tryingmybest Registered User

    May 22, 2015
    #7 tryingmybest, Jun 2, 2019
    Last edited: Jun 2, 2019
    I gave up my job and moved my Mum in with me and am now in my fifth year of caring. Yes it's tough, very tough but after her being financially and emotionally abused by my sibling, I couldn't leave her where she was, so went through 3 very contentious and difficult Court of Protection hearings and the Judge allowed her to live with me. No matter how hard it gets, I'm in this to the end and will do my best for my Mum. She is completely and utterly dependent on me, as can do nothing for herself at all, although can hold a cup and has a little bit of mobility. The hardest part has been her losing most of her speech with Aphasia and I miss our conversations and life can be very lonely. Friends disappear as they don't understand and how could they? Uti's make life a lot worse, of course, but it doesn't matter how much I get her to drink or how much I clean her, she still gets them. She has been really horrible to me this week but I know that's not really her. I try to take her out everyday and I slip out into my garden for a few minutes whenever I can for a quick coffee to keep myself sane. I also have 2 hours off every friday to meet a friend for coffee, otherwise I'm with Mum as her sole carer 24/7, living in a very rural area where there are no day centres etc to give me a break. I'm a very strong and positive person and always find something to make me happy, however small, and that keeps me going. This situation is not forever and I will somehow find the strength to keep going for my Mum. I always think there are so many people in much worse situations than mine and that's a comfort. I wish you and your Mum well.
  7. acorns

    acorns Registered User

    Jan 25, 2018
    Mum used to get urinary tract infections all the time, but for the last few years she hasn't had a single one (although I hesitate to say that as she'll probably get one now). The difference is that either the carers or myself deal with all the washing and toileting and she's well padded up.That might not be connected though - maybe she's just drinking more now that we're in control of that too ...
  8. AdaC

    AdaC New member

    Jun 1, 2019
    Thank you to everyone who has responded - it's lovely just knowing there are other people out there going through / been through similar things and everyone's posts are very appreciated.

    I'm going to speak to the carers again. Mum came through the UTI and amazingly (well, not in UTI-World) by mid-afternoon, I had my mum back and she even agreed to a little ride out in the car and really enjoyed the rest of her day. We had a long chat about the UTIs and she's come round to realising that she needs assistance when she goes to the toilet. I'm going to speak to the carers who cover 1 bedtime and a couple of daytimes and make them aware that things have changed and they do need to insist she goes to the toilet while they are there and uses the commode, so they can check for strength and smell and make sure she's properly wiped.

    No, we haven't got a council care package - don't get me started on that topic!!! Mum pays for the visits, which gives her the choice of which agency she uses and that's how she (and her family) want it. We gave up with the local authority - it was honestly more distressing to mum to have them involved because they just didn't listen and treated mum like she was stupid. We do have a very good relationship with the local GP and he is always happy to do house calls and much more on mum's wavelength.

    Fortunately, I've never defined myself by my career and I am able to set up a little business to keep me busy and to work around caring for mum, so I'm very lucky in that respect. There's absolutely no chance of me regretting giving up my career (I've absolutely detested it for a few years now, so the final push to chuck it in and do something new is actually welcome :D)

    I'm under no illusions about how hard it's going to get and how hard it is now, but I'm in it for the long-haul. If she has to go into care eventually, so be it. We've talked about visiting a few homes while she's still having good days, so she can get a better idea of what's out there. She did do a fortnight's respite care once when I was ill and it was a disaster. It's made me very wary. The good thing for her is that she doesn't remember much of what happened. the short version is that despite a detailed meeting before she went in and an assessment visit at home, her records at the care home had her down as having no dementia and no visual impairments.

    I think the bad days are like childbirth! Once they're over and the sun is shining again, you forget the pain until next time! It's no more 'abuse' than a toddler's tantrum or a teenager's strop. Fortunately, just after I'd posted, a friend who is from a similar culture to ours rang up and we were able to have a really great chat - which made me feel loads better.
  9. Lyd

    Lyd Registered User

    May 27, 2019

    So glad the sun is shining for you today. Long may it last.
  10. myss

    myss Registered User

    Jan 14, 2018
    What I do on days like you had is to take step back or a deep breath and try to remember this point. At the most stubborn times, I've had to repeat it to myself.

    I'm glad to read on that you've had a better day since then. I understand that you're happy to give up your career/business, but please try to ensure that you allocate some assistance where you have a day or some time to spend on yourself. All the best xx
  11. wonderfulmum

    wonderfulmum Registered User

    Aug 20, 2015
    Hi my mum ended up in hospital with UTI problem and I started giving her a small glass of cranberry juice every morning and she hasn't had an occurance since. I also make sure she has some greens (in juice form as she really will not eat veg) I do a kale advacado bricholli and some fruit mix which I have too it's nice.
  12. RosettaT

    RosettaT Registered User

    Sep 9, 2018
    Mid Lincs
    I give my OH cranberry juice now, he's had 7 UTIs since Christmas. He also had green veg juice everyday until he was admitted and I've just started him on it again.
  13. myss

    myss Registered User

    Jan 14, 2018
    I just re-read my post and realised I quoted the wrong thing from AdaC's post. It was this line from her post I was referring to when I said that it's something I often tell myself when my dad's at his most stubbornest:

    More importantly, I know when she behaves like this, she's not really my mum - it's the UTI and dementia talking!


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