Not coping with worry

Discussion in 'I care for a person with dementia' started by Sterling, Dec 6, 2015.

  1. Sterling

    Sterling Registered User

    Jun 20, 2013
    #1 Sterling, Dec 6, 2015
    Last edited: Dec 6, 2015
    My mum is still in hospital and despite 5 weeks of meds she is in complete denial of her diagnosis of Moderate Dementia with depression and Psychosis , is still delusional and now she has very swollen legs and ankles. I have been through a horrible time with the hospital.
    Firstly I let the OT visit at home with mum. Mum refused to put the heating on and when asked where the controls were she led them to the electric cupboard in the hall.
    She told them that she was not on any meds, that the government had stopped her taking high blood pressure tablets.
    She also spoke of how she was dragged from her house by two men who bundled her into the back of an ambulance and took her to hospital. She was apparently screaming out for me but the reply from the ambulance drivers was that it was all arranged by me. This did not happen as it was me that took her to hospital.
    I showed the OT the blackened kettle where it had been boiled dry so many times but mum refuses to replace it.
    When the OT asked her to pack for 2 weeks she just shoved 3 pairs of pants in her coat pocket, despite me asking her if she had brought everything home with her for the visit?She was sure what she was stood in was all she needed and the OT promised she would check when they got back.
    I visited her on Sunday and asked to see her room and sure enough, she had only the clothes that she stood in and the clean pants were still in her coat pocket. No toothbrush or toiletries, nothing. So on Monday eve,after work I took her clothes to her. The nurse there apologised.
    So on Thursday of this week, there was a message on my phone at 12 midday saying " hope you are on your way for the 11.30 Best Interests Meeting. I knew nothing about this meeting. I spoke to the OT because the consultant was busy who said the Social Worker didn't turn up either and the meeting has been changed to next Thursday as a Discharge meeting.
    During my visits to see my mum she has been awful. She didn't want to see me at all as all of this is "my fault". When I returned for the Sunday visit she said "Don't you go and open your big mouth and blow this for me. Don't you tell them I need more rest. I just want to go home and live on my own - I don't want carers. I have told them that you 'll do everything but don't worry I won't hold you to that"
    Being completely honest I can't handle being my mum's carer. I work full time, I have a husband who works in London and travels a bit. I have two daughters about to do A levels and GCSE's, one of which has Chronic Vestibular Migraine and is on strong medication.
    If they discharge my mum she will be back in the same situation before with all of the stresses from her delusions. She refuses any offers of help and says that I will do it all. I don't think she will take her meds because she doesn't think she is taking any now. I don't think she 'll put the heating on and I think we will go back into the section A&E cycle again. She can dress herself but she won't put the heating on - as happened last winter. She does go to the shops but she doesn't know her Pin No. She refuses to go to any Mental Health appts. She has no concept of what is a delusion and what is reality.
    Help I can't cope!!
  2. marionq

    marionq Registered User

    Apr 24, 2013
    Then that is what you must tell the best interests meeting. There is no disgrace in saying that you are overwhelmed with her needs and the authorities will have to take over.
  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Its a nightmare isnt it?

    TBH I think that even if you pacify her and persuade everyone that you will do everything for your mum and she goes home she will not remember it correctly and will still blame you for everything!

    So you might as well tell everyone the truth. If you will find it hard to actually say the words in front of her, then I would suggest that you print off several copies of your post here and give a copy to every person present at the Best Interest meeting and add that you dont want to say this in front of your mum.
    Good luck
  4. Sterling

    Sterling Registered User

    Jun 20, 2013
    Thank you for your replies. The meeting next week is not a Best Interest - they changed it to a Discharge meeting but I will email the OT with this and have copies with me. I am hoping they will suggest a care home for her to go into and be safe and stress free. I feel awful because a decision needs to be made. How poorly with this do you have to be before a home is needed? There is only me to pick up the pieces
  5. Delphie

    Delphie Registered User

    Dec 14, 2011
    #5 Delphie, Dec 6, 2015
    Last edited: Dec 6, 2015
    I was in a very similar situation to you Sterling. A husband with a demanding job, two boys, a job of my own, and a mum with Alzheimer's, living in squalor, paranoid and delusional, and in complete denial.

    I tried supporting her but it took a massive toll on me, my business, my health, and for all the stress and running around for her and the abuse I was subjected to when she, more often than not, had me starring in her delusions, what I actually managed to achieve was very little. I kept her 'independent' for a bit longer I suppose, but so what. There was no real benefit to her and the cost to me was enormous.

    So what I'm trying to say is don't be pressured or guilt tripped by anyone into becoming her carer if you feel you can't handle it. Even if you did you most probably wouldn't be able to keep her medicated, clean, warm, well fed and safe from getting lost or 'cooking' empty pans. She sounds like my mum, perhaps less need of care but definitely needing lots of supervision. So you would grind yourself into the ground only to postpone the inevitable crisis which will lead to residential care.

    To end on a positive note, my mum is doing very well in a care home. I didn't think I'd get her into one (I lied to her and said we were having a holiday together in this lovely hotel... ) and then I didn't think she'd settle, but she did and we're both massively better off for it.

    Never forget that you're important too. Good luck.
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    You must be honest with the people who are dealing with your mother`s care Sterling. It will not be held against you. If your mother is considered at risk it will be in her best interests residential care is recommended to keep her safe. It is also important to define whether or not your mother has capacity.

    I know it may sound hard hearted , but better this than an accident at home.
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Im afraid I dont know how they judge it. I can only say that mum was at a similar stage of dementia when she went from the hospital to a CH and has been there ever since.
    I think the problem will be if she is judged to have capacity and she refuses to go into a CH (which she will!). In this case they may 1) send her home with 4 visits by carers a day. That will probably turn out to be a chocolate teapot solution, but if it happens then you will need to go along with it for a while and then start agitating SS. Or 2) send her to a CH for a period for reablement (may have a different name) and assessment followed by a Best Interest meeting.

    Unfortunately, sometimes you have to jump through the hoops. The main thing, though, is to make it quite clear that you cannot look after your mum. If SS think that you will (even reluctantly) then they will send her home and let you get on with it :(
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    Agree 100%.
    As for being in denial, I honestly wouldn't waste time or breath trying to get her to accept or understand. Past the very early stages my mother honestly thought there was nothing wrong with her - her short term memory was then so bad that she could never remember that she could never remember anything, if that makes sense. She could not remember and was genuinely not aware e.g. that she could no longer even make herself a cup of tea. If anyone had said this she would have denied it most indignantly. And from all I gather this is not at all uncommon.
    Good luck - don't let anyone persuade or bully you into undertaking care you just can't manage any more.
  9. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    I can so relate to your post Sterling. My parents both have AD and no insight into it. Unbelievably stressful when they were at home - kitchen accidents, paranoia etc everything you describe with your Mum.
    I felt constantly on call and with a young family, husband who travels etc everyone was suffering.
    I moved them to a CH in July. It's been the best thing I did. For everyone.

    You must tell the discharge / best interests meeting the truth. About the delusions, her demands and the level of stress you are under. When logic is gone it is in the remit of the professionals and all the assessment processes need to kick in. They have to find a solution that is manageable for you and is best for your Mum ...a residential situation or a care package at home that works for you.
    If it is a CH situation then be prepared for your Mum not to be happy and the guilt monster to be there in a big way. This is often where I'm at with my parents but they weren't happy at home either and the guilt monster was there then too. Your Mum needs to be safe and cared for. And you need to have your family life protected too.
    Even when my parents are upset at me for moving them to a CH I still think I've acted in their best interests. And in mine too. And when they are having a good day in the CH (generally believing they are on holiday) it is such a vast improvement on where we were this time last year that I can't believe I didn't do it sooner.

    I hope the meeting goes well
  10. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    You will need to make it clear that you can't care for your mum, or they will believe her when she says this.
    My father was sent home from hospital (south of england) with no support in place, he had told them that his daughter (me) would do everything so no problem

    They were surprised when I phoned and explained that this was not the case as I live in Scotland.

    You would think that they would check, but I suspect it is much easier and cheaper to believe the person with dementia
  11. Delphie

    Delphie Registered User

    Dec 14, 2011
    This is a very important point, I think. It's one thing to run oneself into the ground to preserve a good level of contentment, but so often this simply isn't the case.

    Hindsight is a wonderful thing... I'm not being too hard on myself but when I look back I really feel I let things drag on for too long. My mum was deeply distressed most of the time as she battled her way through a world that no longer made sense to her, I was stressed beyond belief, my husband was stressed seeing me like that, my boys had very little of my time... So even if my mum wasn't as settled in care as she is now, she would still be better off (clean, warm and fed at least) and there is no question that having her be taken care of is much better for us as a family.

    One more thing to remember is that when care is a constant battle, it's easy to lose sight of other stuff, and by that I mean that when my mum was at home and at her worst, screaming abuse at me and my boys, it was hard to see her as mum and grandma. My relationship with her was never perfect to start with so I could deal with that but it broke my heart that the boys' relationship with her, previously so good, was being affected. Why would kids want to spend time with a grandmother who starts with horrible accusations the minute they walk into her house? Of course I told them it was the dementia talking etc, but it's hard enough for us grown ups to deal with these issues.

    Now, things are much better. They gladly visit her, and although she's starting to forget who they are to her now, she's thrilled to see them. She's almost always thrilled to see me too, which is lovely...

    Sorry to go on, but I really feel that residential care doesn't have to be some terrible final step, or a failure reflecting badly on us carers. :eek:
  12. Sterling

    Sterling Registered User

    Jun 20, 2013
    Your advice is very much appreciated!!

    I wake up at 6 am and it's on my mind all day until my bedtime at 10 pm. I can't escape from it unless I am at work which is proving to be a wonderful distraction.

    She has reported a Roofing company to the Police and Trading standards because of a delusion and also accused someone of running a Facebook campaign of hate which she also says she reported to the Police and they put the 'Frighteners' on this person. She does not have computer or internet access. She was "told". I cannot find any evidence of this and if you google the peoples' names it comes back with nothing.

    She doesn't feel safe and it's affecting others as well now.

    She is a very strong character who is very tricky to get along with.
  13. Dog Lady

    Dog Lady Registered User

    Dec 22, 2014
    You could be writing about my MIL. I have gone through roughly the same as you and didn't know how we would cope if she went home again. To my utter dismay the best interest meeting went well and the SS, Drs and OT all agreed to her not going home as they had assessed her and could see the real person she is, and her troubles with her memory, etc.
    I'm not saying it will go the same way for you but it is a possibility.
    Have you got a diary you could give to the Drs with evidence of problems, this really helped us.
    Don't worry about the discharge meeting seeming as if she's going to be discharged home, it might mean discharged from hospital to another ward or possibly care home.
    I hope the meeting goes well.
  14. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Sterling before mum went into care she called the police quite a bit. They were lovely and had me on record as mum's contact. This ensured I had some idea of what was happening. Have to say I did learn to dread phone calls.
  15. mrjelly

    mrjelly Registered User

    Jul 23, 2012
    West Sussex
    #15 mrjelly, Dec 6, 2015
    Last edited: Dec 6, 2015
    I thought a Best Interests Meeting would only be called when there is lack of capacity. So the person who called the original meeting must have believed your Mum lacked capacity from a capacity assessement that had been done or expected it from an upcoming capacity assessment. Does the change to a Discharge Meeting mean they have changed their minds and now think Mum does have capacity? Or parhaps they planned a capacity assessment but never got around to it.

    I think it would be worthwhile to clarify this point, and provide any evidence you might have of your Mum's delusions and the risks in sending her home.
  16. Sterling

    Sterling Registered User

    Jun 20, 2013
    I have repeatedly asked for a Capacity Test to be done but it's not happened so far and also I want to know the interpreted results of the brain scans she had 1 month ago.
    Today I have sent an email to the Consultant listing all of our concerns and the times when we have had to intervene. It was supposed to be just one A4 side but I thought of more and more things to add to emphasise the point. I did Mark it as confidential and definitely not something my mum can read. I did keep a diary last year but as things became more and more common, I stopped listing it all.
    Thank you again for all your comments xx
  17. mydiamondmum

    mydiamondmum Registered User

    Nov 10, 2015
    Dear Sterling

    My heart goes out to you and I can so understand where you are coming from, it reflects how I have been feeling especially the past couple of days. I spent all day in bed yesterday and didn’t eat, just a few sips of water. The same half of today but am up now and have been drinking tea for the past few hours.

    I am now going to get myself together again, it is important not to let it all get on top of you and have some rest if you need it.

    What good will we be to our loved ones if we don’t take care of ourselves first.

    My mother spent half of 2014 in hospital in 12 different admissions.

    It would result in the same outcome each time the hospital would not listen to me when I told them that she is not coping at home and sending her out with carers did not work as she needed more than that.

    I was in tears at least twice at the hospital as they were too busy to listen to me and were not taking on board what I was trying to tell them.

    One doctor just patronizingly told me to ‘visit her’ when intact I would visit her every 3 days approximately even when having radio therapy (I couldn’t let her know about that or the reason I was having it) but the doctor had just made assumptions that I was not bothering to visit her much.

    Another time my mother had told me that if she had to go back to her flat and stay there alone she would die of loneliness. I was in tears and told this to the doctor on the front desk. He just smiled and said ‘no she won’t’ he was making his judgment because she was quite jolly in hospital, but I knew it was a different story when she was home alone, even though I called her approximately 4 or 5 times a day.

    Then at last they got her into a temporary care home where she has been for almost a year while we have been waiting for sheltered housing or extra care sheltered housing. She has been well and happy since then.

    I have just posted recently as she is going into extra care sheltered housing and I am hoping all will be ok.

    I have found speaking to admiral nurses a great help and Age UK. They are very supportive and give a lot of valuable information.

    You have stated that you can’t cope and you must now let the powers that be know this. I realise now partly from reading you post that we can only take so much then we must get ourselves some help and support to keep us well and strong.

    Best wishes
  18. Sterling

    Sterling Registered User

    Jun 20, 2013
    Thank you so much for all the posts I really appreciate your thoughts!

    Just an update: mum is still in hospital.

    A social worker rang me today to update me on her feedback. She has decided that mum lacks capacity to make a decision about her future, so the SW is requesting that an impartial advocat be put in place ready for a Best Interests Meeting in the next 2/3 weeks. She has promised me that mum will not be discharged without a care plan in place. Phew!

    The OT feels that mums best option is to be in a 24 hr supported environment. That is also my opinion so I need to start visiting some care homes and see which one would be my choice.

    Starting to see a way forward now thank goodness!!

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