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.

Fed up, but got to keep going

Discussion in 'I care for a person with dementia' started by Wookie101, May 5, 2019.

  1. Wookie101

    Wookie101 New member

    May 5, 2019
    3
    Female
    Bournemouth
    I've been caring for my Mum for five years now, and she’s been living with me for four, she has severe dementia and poor mobility issues, she’s also in continent, I’m in a situation where financially I can not put her into a care home, I can’t even afford to have Carer’s in, and yes I’ve looked into this, done too many financial assessments and the answer is always the same, so she’s basically stuck with me and I’m stuck with her till she dies basically.

    Me and my mother have always had a strange relationship, she didn’t always feel like a mother should, and I was12, when I realised that, she’s always been hard work, even before the dementia, to be honest I don’t even know why she bothered having me, the motherly love was basically existent, so why am I caring for her your wondering, well to be honest Guilt & I’m an only child, and since my Dad died, she’s got no one, and i really mean no one, so I have become the main and only Carer in her life.

    It’s not always horrible, she sometimes has good days, but her bad days are very difficult, but mostly I’m tired and fed up of the continuous monotony and I’m fed up with the abuse from her, she’s at a stage where she doesn’t know what she’s doing, or where she’s going, or who I am, and everything I say, she contests with vigour, it’s like arguing with a 2 year old, and she can been quite aggressive towards me, it’s great being slagged off to me about me, because she doesn’t know who I am and thinks I’m someone else, at 2am in the morning, I have broad shoulders, but as every day passes, they sag a little bit, I really don’t know how I’m doing it, oh and we won’t mention the incontinence, what a mess, she doesn’t care where she does it either, so I’m always bloody washing aswell..

    I also have my own family, a husband who always works, a daughter with MH issues, and a son with HFASD, so life’s great. Not..

    Thanks for the rant..
     
  2. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    Hi @Wookie101 I am glad that you have posted here as it is a good place to have a rant. I have had many and also had lots of helpful responses.

    One thing I do is that your mother is not your responsibility and you do not have to pay for her care, she does and if she has no money then the local authority pay.

    You seem to be doing too much and if your mother is behaving as you say, it is no wonder that your husband is always at work. You must get some help. Social services have a responsibility here, not you.

    Hoping you get some help soon.
     
  3. Wookie101

    Wookie101 New member

    May 5, 2019
    3
    Female
    Bournemouth
    Hi, I ve asked for help many times, but in a world where SS is stretched to budget cuts etc, all I’m told is that she’s better off living with me, and I’m left to deal with it on my own. They say there’s help, but there really isn’t,
     
  4. father ted

    father ted Registered User

    Aug 16, 2010
    684
    London
    So sorry that you are having such a bad time Wookie101.

    You sound utterly exhausted and defeated with all your responsibilities. I am sure others will come along to offer advise but for what it’s worth I will say this.
    You say you could not afford carers for Mum but SS would be assessing her finances- not yours.
    Your children’s needs must take up a lot of your time and, I think, should be your priority. I am sure you want to do right by your Mum. Often, regardless of what our past relationship has been like we are hard wired to feel it is our duty to care and this is hard to shake off so means many carry on beyond their caperbilities.

    In your shoes I would contact SS. You need support and help and it won’t be coming from anywhere else. Often when we are so tired of it all we dismiss things because caring renders you exhausted or inert in equal measure. You deserve more so on Tuesday call SS and read out your post to them. Good Luck.
     
  5. Normaleila

    Normaleila Registered User

    Jun 4, 2016
    653
    SS will say she's better off with you - because that suits them. They can't force you to have her live with you. They can't. Tell them you will take her to their offices - or your MP's next surgery - and leave her there. You have given all you have to give and can't be expected to do more. It won't be a selfish act - you'll be doing what needs to be done to get your mother the professional 24/7 care she needs.
     
  6. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,470
    Sorry I know it's hard but you need to toughen up for the sake of your family. Tell them you cannot look after your mother any longer. She is not your responsibility.

    You have done your best but your family is suffering from all of this and you sound like you have reached the end of your tether. You have to be strong about this or it will continue.

    Please try to help yourself with this.
     
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    You seem to be in a terrible situation @Wookie101.

    The people on the Helpline are very good and I think you may benefit from a chat with them. They aren't open on Mon 6/5, but the details are

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    Please note the Helpline will be closed on Monday 6 May (Bank Holiday). We will open as usual on Tuesday 7 May.

    Live on-line advice is also available in the UK and you can see the details of that if you follow this link https://www.alzheimers.org.uk/get-support/national-dementia-helpline/live-online-advice

    It may also be worth trying the Admiral Nurses to see if they operate in your area. You can click this link to get to their website https://www.dementiauk.org/dementia-uk-helpline-extends-hours/
     
  8. Fullticket

    Fullticket Registered User

    Apr 19, 2016
    460
    Chard, Somerset
    I echo the above advice - SS will do what suits them but you need to look after yourself and your family. Ultimately, it is not your responsibility and if you are not coping then it is SS duty of care to look after her and you. It is an awful situation to be in but have a word with the helpline who will be able to advise you on your rights, your mum's rights, etc.
    I had always had a terrible relationship with my mum but stepped up and looked after her. I believe it was for the right reasons (which includes guilt!) not so that I could feel righteous. At times I despaired and offloaded a lot of grief on this site. However, with hindsight, which always had 20/20 vision, in the process I learned a lot and feel I am now a better and tougher person.
     
  9. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Hi Wookie,

    You sound at the absolute end of your tether, and I want to echo what has been said by others. You have no legal obligation to provide 24/7 (or in fact, any) care for your Mum, and nor do you have any legal obligation to fund residential care (or any other care) for her. If she can't afford it, then the LA DO have a responsibility. In my experience - and in the experience of a lot of others - its pretty typical that the LA, and other agencies, will basically lie, fudge, prevaricate and do anything and everything they can to leave you feeling like you have no option but to cope. Anything - rather than them step up and take the responsibility that lies legally on them - NOT you.

    I also want to add a bit about feeling guilty. Its something that I think every single carer battles, and something that is hard to live with. However, you have provided care to the absolute best of your ability for several years now, wihout support, and its clearly reached the stage where you can't continue - not because of any lack in you, but because the dementia your Mum has, has reached a stage where she needs more than you, or ANY carer can provide on a solo basis, at home. Its for her sake, even more than yours, that you need more help. I kept my Mil at home with us when everyone was saying that it was too much - an old promise that I would care for her, the fact that she was a wonderful Mum in law, the fact that I couldn't envisage or accept that a care home could actually be better for her (as well as us) and guilt - all these things combined to make me keep trying for a long, long time. 3 years on, when circumstances left me with no choice but to go down the residential route and I can see that where she is now is so much better for her. The carers aren't exhausted to the point that I was and can go home at the end of a shift - meaning they have more energy and patience. They are trained to deal with her behaviour, ave support from fellow staff on tap, have the equipment and resources to deal with the practical side of caring, and they can access help , from medical to practical, far quicker when she needs it, than I could.

    Insist on support, be it home care or residential, and stick to your guns. Use phrases like 'vulnerable adult', 'duty of care', 'carer breakdown' and keep reminding them that you have no legal responsibility - but they do. And keep in mind that residential care in particular, can sometimes (often) be the best thing not only for you and your family, but for the person you care fo too xxxx
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    @Wookie101 If the financial assessments are saying that they wont pay for things this means that your mum has savings/assets of more than £25,000. Is this true? You should not be paying for anything at all. Have your finances been accidentality included into her assessment, or is the problem that your mum has this money, but you cant access it?

    Something you can certainly do (and you should not have to pay for) is getting a referral to your local incontinence clinic where they will supply incontinence pads. You may have to top this up with extra, but, again, your mums money should pay for it.
     
  11. WanderingMary

    WanderingMary Registered User

    Oct 18, 2017
    12
    I just wanted to let you know I understand what you're going through and my heart and thoughts are with you. As an only surviving child I am my mother's only family member and care for her with no help. It's a very challenging situation, and as you say, there can be good days, but many are not. I can't give any great advice, but I will say again that I am thinking of you.
     
  12. lis66

    lis66 Registered User

    Aug 7, 2015
    239
    Sending hugs to you wandering Mary I to am an only child ,and care for my mother it's hard very very hard hope you get help soon take care xxx
     
  13. CandyCrushed

    CandyCrushed New member

    Apr 6, 2019
    8
    I too am my mother's only surviving child.
    I too, am a mother of 5 (and a granny of 3).
    I NEVER got on with my mother (especially after she shoved off with my stepfather and her new 'children')
    I feel for you.
    You aren't alone.

    No real advice from me - just huge hugs.
     

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