Just started refusing carers.

Discussion in 'I care for a person with dementia' started by Champers, Apr 8, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    i know there quite a few threads about this, but I wondered what others had experienced, and how they either coped or got the sufferer to ‘come around’

    Mum was formally diagnosed with early Alzheimer’s in February. She lives alone and is fiercely independent- although this is partly to do with her always having been very anxious about others perceptions of her and doesn’t want to admit weakness. I’ve mentioned in previous posts that she has also always been an extremely contrary character and I’ve suspected that she may well of had undiagnosed mental issues. She was an awful parent, bordering on cruelty and in hindsight, possibly now she would have been guilty of child abuse. I am only child and despite her atrocious past behaviour, I can’t just walk away at this late stage.

    As I live two hours away, I’d put quite a few things in place, visits to the day centre, lifts to her church and carers twice a week for companionship and to help her unpack the online shopping order I have arranged. She has alienated every single one of these and today I’ve heard from the care company that she was absolutely hysterical about their visit and sent them packing. Her default position is to tell everyone she is too ill (whenever I ring I get the exactly the same story of how she feels weak and lightheaded) but she was furious when I asked her doctor to visit her! Ironically, the doctor could find nothing physically wrong with her - all bloods etc were normal - although she is in total denial about her real illness and accused me of making it all up. This, despite numerous hospital/clinics visits and correspondence to support.

    Following a visit by the hospital OT, it was suggested that I up her carers visits but after today, I think we’ve taken a step backwards. She’s keeping herself and her house clean, I’m not sure she’s eating well but I do ensure that she gets decent groceries delivered. She won’t entertain the thought of meals on wheels, has always turned her nose up at ready meals. She keeps talking about how angry she is with myself and others interfering with her life but I’ve had to step in and obtain a POA because she was all over the place with money, was buying totally inappropriate shopping etc and because her short term memory has gone, she was either forgetting to pay bills or paying them twice.

    I guess my question is; do I just step back and let a crisis happen? I know that sounds so callous but I’ve tried so hard get things in place - for my peace of mind, as much as for her quality of life - but I can’t force her to accept help and if she sends it away, I just feel so guilty that I’m not doing enough, especially when the memory clinic have suggested more hands on.
  2. marionq

    marionq Registered User

    Apr 24, 2013
    I think the main thing to realise is that you can't "put things right". You can do as you have done - arrange carers, shopping, alerted the GP and so on but beyond that if she resists then you have to let go until it all comes to a head. That may be complaints from neighbours or others but you have done all you can.
  3. Champers

    Champers Registered User

    Jan 3, 2019
    Thank you Marionq - I really appreciate you saying that. I think we’re all under pressure to “do the right thing” but there is only so much that anyone can do. I’ve just had a gentle chat on the phone with her about this morning’s issues and she clearly thinks I’ve lost the plot! It’s like it never happened and “why on earth would I send anyone away?” o_O
  4. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    I think as Marionq has said you can, to be honest only do so much. My mother-in-law was very similar she used illness all her life to gain control of people . She had mental health problems most of her adult life was emotionally abusive to my husband and his sister. We also used to get the continuing story of how family members could never do enough for her she never wanted any carers but according to her could always do everything herself although the reality was she could do little for herself at the end. We had carers 3 times a day and when she became abusive rude verbally aggressive to be frank with just ignored it and carried on anyway with a care agency . She went a couple of times to a day centre but according to her everyone there was nasty to her although the reality was it was the other way round. In the end my husband and I acknowledged that her state mind was such that she needed
    to go into full-time care she would refuse point to do that so we just waited for a crisis. Eventually it came last year she went into hospital and from there she went straight into a care home which we organised ourselves. Don't beat yourself up over this I think you've done well to get this far
  5. charlie10

    charlie10 Registered User

    Dec 20, 2018
    Can only sympathise @Champers .....we're resigned to waiting for the crisis as there is no talk of him not having capacity, and therefore it seems that he can do what he likes, regardless of how it affects his health or anyone else :rolleyes: even if a crisis happens, if he still has capacity I'm not sure it will change anything :(
  6. SewHappy

    SewHappy Registered User

    Feb 3, 2019
    I lived through similar. Mum is PWD and she used to live with my stepfather who was a hoarder and happy to be dirty and live in filth. He wouldn't accept any offers of help and shouted and raged at me if I tried to change things and I needed to keep contact with mum. Mum asked me not to fall out with him.

    Stepfather told everyone he was managing but we lurched from crisis to crisis. He openly bragged about ignoring medical advice about how to manage his diabetes. Loads of hospital admissions for diabetic hypos which relied in mum remembering enough to call ambulance. Also generated emergencies that I was supposed to drop everything to deal with.

    Finally one paramedic raised it as safeguarding. Two emergency social workers, then one social worker and doctor all swung into emergency action. Stepfather and mum had capacity but threats of court action if stepfather not co-operate and enable mum to have care. Not sure of basis of action and I didn't care as I wanted change.

    Started to get somewhere with truculent stepfather and action plan for proper care but then stepfather had fatal fall.

    Mum now safe and settled in lovely care home near me. Safeguarding issue was what it took to get stepfather to co-operate.
  7. MaNaAk

    MaNaAk Registered User

    Jun 19, 2016
    Dear Champers,

    It is almost a year since I was in the same position and it was at this point that I started looking at care homes first for respite care with eventual full-time care in mind. I think you should start looking now and put her name down for respite at least. Meanwhile I think you should approach the dementia nurse and tell her exactly what's been going and just maybe she can look at your mum's medication.

    Thinking of you

  8. lis66

    lis66 Registered User

    Aug 7, 2015
    Hi champers you could be writing about my mum AD for six years in her mind she doesn't need help ,with anything,she needs help with everything,also tells me she's lightheaded and dizzy ,often sore throat is mentioned aswell had her at drs bloods all fine !!!
  9. Champers

    Champers Registered User

    Jan 3, 2019
    Thanks for all your replies - they are more appreciated than you will ever know. Just knowing that one’s situation isn’t unique somehow slightly eases the burden.

    Things have since last week taken an interesting turn. Because mum has cried wolf so much throughout my whole life, it’s possibly backfired on her because no one took her seriously. Her doctor has requested a follow up blood test as mum is severely anemic - this wasn’t mentioned initially. The doc has suggested that this sort of anemia is usually associated with something like bowel cancer and the second result shows the anemia is even worse. I drove up to see her on Thursday only to find her in bed, fully dressed, at lunchtime. She said that she felt so tired that she had gone back after breakfast. When I got her up, i found towels under her with bloodstains on them. She was also complaining about a painful rectum, had a couple of small accidents and has lost a lot of weight in the last 10 days since I visited. I now feel terrible because I was so dismissive of her behaviour.

    I’ve made an appointment with her GP on Tuesday to talk about the whole scenario. Whilst discussing the anemia on the phone, she told me that, “if your mother does have something like bowel cancer, you might want to weigh up the pros and cons of putting her through investigative proceeds and treatment, given her state of health.” I assume this is a roundabout way of telling me that a) It’s a high possibility that it’s BC and b) that she doesn’t recommend treatment, only palliative care. I realise I’m second guessing but I want to cover all bases.

    Also, because mum is now clearly in pain and spending most of the day in bed, can I push to have her urgently taken either into hospital or nursing home to manage her pain relief? At the moment, this now seems to be more urgent than her Alzheimer’s, and it would be cruel to leave her alone when she will clearly struggle to even feed herself as she is very weak.

    Many thanks.
  10. charlie10

    charlie10 Registered User

    Dec 20, 2018
    So sorry to hear about your mum @MaNaAk ....as if dementia isn't enough to bear! I hope they are able to keep her comfortable and content, and that you don't get too overwhelmed by all the necessary decisions etc....take care of yourself
  11. LHS

    LHS Registered User

    Oct 5, 2018
    This is very similar to my mum's situation. She is very proud and very defiant and refuses any formal support. If I try to suggest some kind of external support then I often get a sharp remark made back to me or Mum bursts into tears but still refuses support. If anyone mentions golden oldies singing or Meals on Wheels she'll rip their head off.

    2 weeks ago I got a phone call from the police that a neighbour had seen and prevented mum trying to get out of a first floor window . naturally my first thought was oh my god is Mum ok, then my next thought was that this would provide the trigger an absolute trigger for getting formal support for Mum. As it turned out the information was slightly wrong in that it was a ground floor window and that Mum was partially logically trying to get out of it because she lost her front door key to get out the house and myself and a friend were not available to contact at that point on a mobile phone. . However it does look like I can still use the opportunity because Mum agreed to have an appointment to have an alarm system fitted in her house that she can press and talk to someone if she is confused. That appointment is this Friday so we will wait and see if mum still goes ahead with it - it's a 50/50 shot at this point I think.

    In terms of further support for Mum - if she remains as defiant as she has been then it will need some kind of further emergency to happen. She is still aware enough that she cannot be deemed to have lost mental capacity and whilst she's still has awareness I want to spend happy time with her, not just go on about support for her however much she needs it and indeed that I would like her to have it.

    It is a brutal disease for everyone involved and in most instances there is no right or wrong way to proceed. I have drawn comfort and strength from many different posts on this forum in realising that others are experiencing similar difficulties and offering words of support and sometimes some practical tips too.
  12. LesleyG

    LesleyG Registered User

    Feb 4, 2017
  13. LesleyG

    LesleyG Registered User

    Feb 4, 2017
    I couldn't believe your Post as I could have written the same myself. I am an only child and yes my Mum has always been abusive. Especially when I was a child. Now with Dementia it has magnified probably what has always been some kind of mental condition. Like you, I do not live close by. And, like you I have tried to put everything in place to help. And, I know nothing will ever be right or be good enough. So, after three years, I am having to step back as much as is possible. We cant make it right. We couldn't as children, and we certainly cant now. It is so hard to give to someone who should have never been a parent in the first place! Then I feel guilty! My Mum and Dad live in a Warden Assisted flat together with Dementia. There are Safeguarding issues between them and I am in the middle. However, to save my own sanity, I have to limit the phone calls, and the visits. None of this probably helps. But, at least you know that someone else possibly feels the same as you.
  14. Super sixty

    Super sixty Registered User

    Aug 20, 2016
    Hi Champers,
    Like others you could be talking about my mother, although not abusive as such she had
    Four of us children & basically found coping hard. She was diagnosed April 2015 & is still
    In total denial , having carers 4 times a day, she frequently takes against one or another & is really
    Is so rude & nasty, causing call from care company, I add she's diabetic & insulin dependent. She frequently tells myself & my sister that she feels weak & shaky although she is also anemic but
    totally refuses iron or investigation, unfortunately you can't force or should I say reason with someone
    Dementia/ Alzheimer's to cooperate you can only be there & support them when it's needed. Good luck with everything, make time for yourself, remember you have a life also, your not alone x
  15. lewis08

    lewis08 Registered User

    Apr 13, 2009
    Dear All. have not been on this page for many years as getting my mum into a care home in UK was stressful but easy as I live in Australia and she has been well looked after for the past 11 yrs & I visited as often as I could to make sure she was well looked after. however NOW my husband has vascular dementia at the age of 80 and is denying everything the doctors say & will not accept carers into our home. I now need to go to court to be given Guardianship to make sure he can be put into a nursing home as he has been assessed as needing 24/7 care! At the moment I have had to care for him in our home as that is his legal right! I was diagnosed with osteoarthritis 20yrs ago which is getting worse everyday! I am at my wits end and cannot move forward! I am on 24hr notice should my mum become ill or worse & to top it off yesterday my husband decided to cook himself fried eggs & now I worry he could burn our unit down??? when I turn my back! The Legal teams for aged care need to be more considerate towards the carers of the aged!
  16. USoA

    USoA New member

    Oct 22, 2018
    Hallo. Just read the thread re people with this awful disease refusing carers etc. I was SO relieved to read that this is not unique to my situation.

    My Dad was diagnosed with Alzheimer's last year. He also has a rare and progressive heart condition which causes immense fatigue, and has had numerous falls from which he cannot get up. Some of these falls have required trips to hospital or the doctors. In addition my mother is suspected to have dementia but refuses to be tested.

    I have spent the last 15 months trying, and failing, to get help put in place for them but they steadfastly refuse. It is as if I am the one who is bonkers as far as they are concerned. The strain of worrying about them has taken a toll on my physical and mental health. I would love to have been able to instigate the help that all health professionals and the social worker says are clearly required by my parents but they simply will not accept that they need it.

    Like others in this thread, I too have therefore had to withdraw from my parent's lives and just wait for the inevitable crisis to happen. I feel so very guilty in doing so but they are so stubborn and all we have done in the last year is fight. I am not an only child but my sister lives 3000 miles away and realistically cannot help that much. Though she feels guilty about that too.

    The whole situation is awful.
  17. Fearnodarkness

    Fearnodarkness Registered User

    Jun 10, 2014
    We had to tiptoe around Mum for years just to get her to accept people doing her shopping with her, and some extra cleaning. That was it. She lost touch with her friends, but hounded any visitors or carers out of the house, despite claiming at times that she would accept more help. In the end she had a fall - ironically on a day we were there to get her a doctor's visit for her cough, and her mental health nurse came and said how wonderfully mobile she was for her age (I didn't agree and wonder now why he thought so) - and at the end of the day she was in hospital with a broken hip. She healed up very well, but now she is in care and ... we have a whole lot of new things to worry about. She was a very intelligent woman, and I always thought I was reasonably intelligent, but now I see that Alzheimers strips away a person's ability to consider what is happening to them and act on it ... and the pressure eats away at your family. I don't have any answers any more, we just manage the situation a day at a time.
  18. ThreeOfUs

    ThreeOfUs New member

    Apr 28, 2019
    Dear USoA

    I feel for you and I hope you know that you have done what you can. Everything you have said here is happening to me. I too am not an only child but I am the only one living in the same country and I happen to live 3 miles away. My mother, the sweetest, loveliest person has turned into a banshee when carers try to come in and my father who does not have dementia but is very sick from a variety of serious conditions including extremely frail tells my mother when they come round not to let them do anything. He shouts at them to get out and my mother follows his lead because she always asks him what she should do.

    He has been using my mother as his carer for some time and is furious that she is more or less unable to help him properly. He deliberately fell in their home (he confessed to me) so that he could get two weeks in hospital to get a rest from her. I arranged carers for my mum when this happened as I couldn’t take more than two weeks from work and he discharged himself from hospital so he could be there to stop them from helping, as his two weeks were up. He was horrible and rude to everyone in the hospital (he had a condition that needed hospital treatment but was told he would have to wait for a bed and that their were obvious complications due to my mothers condition. So he decided to speed things up, knowing that if an ambulance came to their house they would admit him)

    I managed to keep the carers coming until this week when he refused them entry. I have had the Dr come round for a intervention because he was being so difficult and preventing my mother from being cared for. But he fobs people off and they believe him, so when they leave he turns to me and says he’s not doing that. My mother is not washing herself properly, doesn’t change her clothes and doesn’t eat. But she is on auto pilot and makes my Dad breakfast (toast and orange and tea) and is constantly getting up to see how he is. When he was in hospital she slept most mornings, ate sandwiches I made for her and could relax. She has lost about 24lbs over the last year. When he came out of hospital he told the neighbour not to bring in sandwiches for her because that would take away her independence and shouted at the carers to not make any sandwiches as she wouldn’t eat them.

    I have power of attorney for her medical care and POA for both their finances. Which is why I could organise the carers. I have had the District Nurse call me to tell me she is worried about the safety of my parents in particular my Dad because he is so frail but he is also very manipulative (which he has been his whole life) So, this week I have had to call social services to report my father for abusing my mother. I can not describe how I feel about that because I am numb to it all. It has been going on for so long (probably about 3 or 4 years now, of turning away help) that I just find solace in copious amounts of chocolate and cakes, which isn’t doing me any good at all). I am waiting now for the Community team from Social Services to visit and let me know what their verdict is and find out how to proceed from there.

    Like you, my parents have made me feel like I have been over reacting. But my father has told the carers that he makes the decisions and not his daughter. He is in charge. Unfortunately, my mother is suffering as a consequence. I do have great support though, I speak to my brother and sister weekly, the Dr called me on the way home from work to tell me I’d done the right thing and I have his support, as well as the neighbour who has been popping in everyday to make sure my mum is alright.

    Hang in there and know that you have done all you can. X

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