I really can’t take much more...

Discussion in 'Welcome and how to use Dementia Talking Point' started by Rosserk, Jul 13, 2019.

  1. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    Hi all


    My mother’s dementia is getting worse by the day and I’m finding it extremely difficult to cope.


    She lives with us and every day is filled with confrontation, anger and accusations, it’s never ending. She is now convinced I’ve stolen all her money which of course I haven’t. I am literally spending my life hiding in my bedroom to avoid confrontation, I can’t engage with her in any way because she sees any communication from me as an invitation to go off on a rant. When she speaks with my husband or adult children she says terrible things about me, even the doctor told her she had to stop saying such disgusting things about me. He’s known me for 35 years and knows I’m not capable of saying or doing the things she’s accusing me of. I know I should ignore it and remember it’s the disease talking but that’s easier said than done when it’s so relentless and you do wonder if people think there’s an element of truth to what she’s saying.


    I think it would be better for my mother to live in a care home because I honestly feel like I can’t cope with her any longer but she’s making me feel so guilty. I have no quality of life and the strain on my family is enormous! She knows there is something wrong because in her lucid moments she pleads with me not to put her in a care home which makes me feel incredibly guilty. Physically she is fitter and more active than I am, which means I’m not physically capable of stopping her from leaving the house when she wants too if I can’t distract her, which is usually the case. I don’t think it’s safe for her to be going off on her own but I am powerless to stop her!


    Has anyone else been in a similar situation and if so what did you do? My father was sectioned under the mental health act because he was a danger to himself and others one of the reasons being he would go out on his own and disappear for hours or forget how to get home.
     
  2. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    35
    Hi there,

    My Father was sectioned 2 weeks ago under Section 2 and will likely continue in a Section 3 for a number of months. He was restrained and sedated that that they could rule out any medical issues which they did. He was diagnosed in the mid stages last year but his FTD is particularly progressive and we’ve experienced a lot of what you have described above recently. Over the last 6 weeks he has just gotten worse due to a rapid steep decline and we couldn’t handle him (he’s 60) he is also exceptionally fit and able but we think he’s now having an adverse reaction to the drugs that have previously worked for him. Unfortunately he is also super sensitive to medication so cannot have many meds that are recommended.

    Dad normally lives with us at home but we have to see how he gets on and if they can stabilise him, I think it will be 50/50 if I’m honest, but they are doing a great job with him and looking after him well whilst we ride it out and see what can be done.

    I’m sorry to hear of your situation and it must take a huge toll, I honestly think perhaps residential care of some sort would be potentially best. As much as we love our relatives with dementia, in my opinion you cannot ruin your own lives for the sake of keeping that person at home.

    We would love to keep my Dad at home but we’ve come to realise that even though he would want it too, it may not be the right and best thing for him.

    Do you have a CPN that you could talk to? Perhaps sectioning for your mother might not be a bad thing if they are able to help her?
     
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,717
    Male
    Bristol
    I have no experience of that problem, sorry Rosserk. It has to be stressful beyond anything anyone should live with though, even if your mum can't help it. I would contact social services for an urgent review and support, and not worry about guilt as she would be safer and well looked after in a home while you would be able to support her better without the stress.
     
  4. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
     
  5. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    Thank you, it’s really kind of you to take time to respond and much appreciated.

    SS are coming on Friday but it will be impossible to speak freely in front of my mother and I’m convinced they won’t help. I think they’re going to guilt me into looking after her at home. I also don’t know the practicalities of removing my mother from my home to a care home. I have visions of them dragging her out kicking and screaming!

    She was diagnosed a week ago after 18 months of trying to get her to a doctor we finally managed to get our Doctor to visit.

    He gave her some tablets and said he’d inform SS but that’s all the advice we’ve had.

    Kindest regards x
     
  6. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    35
    No problem, I use this forum for that purpose too and to help gauge my responses to healthcare professionals and how the disease affects others. FTD is Frontotemporal Dementia and CPN is Community Psychiatric Nurse, we were assigned one through the NHS when we were referred to a consultant and follow up care, although I know what people have access too differs by area. We have a RRT rapper response team for dealing with Mental Health Crisis, we had to get Dad to A&E where he was then further assessed and sectioned 3 days later. I would suggest as above, contacting the MH crisis team or similar and Social Services to see what they can do for you now.

    We have had my Dad in respite previously, and the first few times he was fine, but the last time a few weeks prior to sectioning, he was on a knife edge, running off, refusing to leave other peoples rooms, lashing out etc My only fear is that any care homes may not initially take your Mum if you deal with this on your own, I believe going through MH and SS and getting them to assess and set up a care plan for your mum, may be the best idea to try and stabilise her.

    This is just in my opinion/experience.
     
  7. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,717
    Male
    Bristol
    Good luck on Friday, Rosserk. Can you find a way to intercept the social worker at the door and speak separately or send an email in advance to set out your concerns? They have a statutory duty of care to make sure your mum is looked after, and they can't expect you to do so in the present circumstances. Sorry, that comes over as a bit brutal, but it was the sort of thing you have to say to them in advance if you get the chance.
     
  8. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    I was going to get some email addresses on Monday and send an email prior to their visit. It’s really scary not knowing what to expect. I really just want all this to end as soon as possible and I feel like it’s going to go in forever.

    Thanks again x
     
  9. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    39
    Hi Rossetti,
    What you described was where we were at in Jan this year. I had been asking for help for over 18 months it was affecting the whole family.... I was told to give my mum notice to quit which I did by social services as my mother was still deemed to have mental capacity by CPN. It got very messy ... we where told to move out of family home & leave mum to it, she was vile about me & CPN believed every last lie she spouted. When notice ended social services collected her they put her in temp accommodation which lasted all of 3 weeks b4 putting her in a home. I have never seen her again . They have taken my mother to her bank to try & overthrow LPA’s. When I have tried to complain to local council have been told I can’t as they have safeguarding in place.
    None is satisfactory but at least I can now leave my bedroom without the verbal abuse.
    If she is still deemed with mental capacity she will be their client & will be believed whatever you say so you need to weigh up your own sanity & safety you have done all you can stop feeling guilty..
    As a side note SS took mum to a solicitor who told her I needed to serve section 21 which I couldn’t as she never paid anything for living in my home as she felt it was my duty to look after her in every way as I was her daughter
     
  10. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    #10 Rosserk, Jul 13, 2019
    Last edited: Jul 13, 2019
    My dad was sectioned because he could be violent I’m not sure if my mum would ever actually lash out but she’s definitely scary when she goes into a rage which is just as bad! Even if they medicated her so she was calmer and not so aggressive I still couldn’t cope looking after her. She needs constant attention which I’m not able to give. I have two autoimmune diseases Are exasperated by stress. Most days I can barely stay on my feet for more than a few minutes at a time and I’m alone week days while my family are working.

    When it’s just me I can stay in bed if I’m unwell or curl up on the couch, my mum doesn’t understand that I’m not well she just thinks I’m a lazy cow!

    Thanks again for sharing your experience x
     
  11. Abbey82

    Abbey82 Registered User

    Jun 12, 2018
    35
    I definitely think you need to go as you are through the SS option, but as said above by someone else, ultimately and legally its not your responsibility to have to care for your Mum, it sounds so harsh and uncaring but ultimately I think it would be best for her if she was cared for in a home, and see what they can do to try and stabilise her a little bit.

    Keep in touch, there's no one fits all, I've learnt a lot through others on here and also found better ways of dealing with things personally too.
     
  12. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    #12 Rosserk, Jul 13, 2019
    Last edited: Jul 13, 2019
    Oh my goodness that sounds absolutely horrendous. It must have been really difficult for you. I understand the toll it takes on family life we’ve been living with it for 18 months. She’s lived with us for three years and even though she didn’t have dementia the signs were there and she was always difficult but I put up with it because she’s my mum and I do love her.

    My mother definitely doesn’t have mental capacity so I don’t need to worry on that score.
     
  13. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    39
     
  14. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    39
    Has she had mental capacity test?
     
  15. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    She hasn’t had any tests yet other than what the doctors done. There is no way anyone would find that she has mental capacity. She can barely string a sentence together and she doesn’t understand anything that’s being said to her.

    Is the test carried out by a social worker, or the doctor? I know the doctor said she failed a test he gave her miserably he said she didn’t get a single thing correct.
     
  16. BluTinks

    BluTinks Registered User

    Dec 7, 2018
    39
    Mental capacity tests are normally done by a medical professional & a social worker
     
  17. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    Then I have no idea.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,880
    Female
    South coast
    @Rosserk - I think you said this behaviour started about 6 weeks ago and that he has just been diagnosed and given tablets.

    Were the tablets donepezil (Aricept) and did the behaviour start/get worse after she started taking them?
    The reason Im asking is that sometimes donpezil can adversely affect people with dementia (especially FTD) and make behaviour far, far worse. If this seems a likely cause then please do get back in contact with the person who prescribed them.
     
  19. Rosserk

    Rosserk Registered User

    Jul 9, 2019
    67
    Hi thanks for the response

    She has been given Lorazepam but only started taking it a week ago. Her behaviour started to go downhill about 6 weeks ago. The first couple of days she was taking the lorazepam I thought she was cured because there was a real improvement she was much calmer but by the third day she was back to how she was before. I think they just made her tired in the beginning.

    She’s also had some antibiotics just in case she had a water infection that was causing delirium but they didn’t work either.
     

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