dad displaying symptoms but refused consent for tests at clinic

Discussion in 'Memory concerns and seeking a diagnosis' started by Eowyn, Jul 27, 2019.

  1. Eowyn

    Eowyn Registered User

    Jul 27, 2019
    13
    I don’t know how to begin a new thread so I am adding to this one, hope this is ok.

    I would like some pointers please about a new behaviour that my Dad is displaying. My Mum is his primary carer, as you know, and things are getting to the stage where he does not like to be left and kicks off before she is meant to go out sometimes. This does not happen each time she goes out, in fact it tends to happen mostly just before she is due to pick up my MIL on the pretence that she is accompanying her to a physio appointment (but actually meeting for tea and sympathy). This doesn’t mean to suggest that he doesn’t like my MIL, in fact he really does and has a lot of respect for her, but he always causes an issue for Mum just before she goes out; and when Mum returns 2 hours or so later she usually finds angry notes around the house and/or him gone out, or him waiting for her to return so he can shout and her and then leave. He usually then comes over to mine (even if I am at work still, he will wait outside for me) to explain how mad she is and how he’s had enough. It’s all so hard.

    I've heard of shadowing, which he will do when Mum is moving from room to room, but because he’s able to function “normally” in so many other ways (he will happily sit and read for hours, research local history on the computer, even paint the garden fence) I am unable to explain or correlate this pattern of behaviour. Is this also fear of abandonment? Some insight would be appreciated. Thank you.
     
  2. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    395
    Sheffield
    My OH would get very angry when I returned from an outing it’s very frightening as he could try and kick me! I was very firm with him and told him I would not tolerate this behaviour. He did stop it and would look sheepish. Talking to him as though he is a child seemed to work.
    It’s very tiring living like this my OH has vascular dementia and Alzheimer’s he was diagnosed over 3 years ago.
    He just got worse and didn’t want me to go anywhere not even to visit our daughter and baby grandson. It was a battle to get him to come with me but I knew I couldn’t leave him alone as he would be nasty when I returned. He was ok when we got there and took him out for ice cream.

    Until you have lived with it you have no idea how frustrating and upsetting it can be.

    My OH is now in a care home because I had to go in hospital for an eye operation 7 weeks ago! He didn’t like it at first but he is settling now and when I visit he is so nice to me. He is not aggressive and less agitated. I feel better too although I do miss him so much but I know I can’t look after him on my own anymore. His short term memory has got much worse this year he doesn’t recognise his own home anymore!
     
  3. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    build up a diary & keep sending updates to GP social services- I made a pest of myself. Even contacted the Clinical mental health team- but still found myself in one pickle after another. Had hel from great social worker - amazing hel from a community matron with my Mums situation. Dads has had to teach another crisis punt before we are moving forward .
    not ideal situations to experience but you find with a little support you get the energy to keep pushing forward.
    Please keep pushing forward
    Best wishes
     
  4. Fishgirl

    Fishgirl Registered User

    Sep 9, 2019
    101
    Hi Eowyn, for me that behaviour has been the hardest symptom to cope with up to now ( although I know there are a lot harder things to come!) I’m sure it is a fear of abandonment and the need to feel reassured all the time, but it’s so difficult to come to terms with. My mother is one of four sisters, so there are lots of cousins, nephews and nieces are there’s always a wedding, christening big birthday etc coming up, and that would be brilliant for me, it would give me something to look forward to and a break from the long miserable days, but no I can’t go to any of them because of his need to constantly have me in his sight! he does the shadowing thing a lot as well! I feel as though I’m being smothered constantly! I hope your mum can carry on with her outings, it’s important to have a break. I gave in and now I wonder if he would have accepted it eventually if I hadn’t! xx
     
  5. Eowyn

    Eowyn Registered User

    Jul 27, 2019
    13
    Another very bad day yesterday, we seem to have more bad than good lately. We are still waiting for a diagnosis, which seems to be a long time coming. I hope it’s soon and then we will know what we are dealing with.

    Yesterday started off ok, but something switched suddenly and Dad became angry and very aggressive. He hoards newspapers and they were scattered across the lounge floor in a fit of anger (he immediately blamed me and said it wasn’t him, even though I was at work). After this he squared up to Mum and held her by the arm up against the wall, and screamed insults into her face. She is struggling to cope and is often on here reading tips and strategies, but in the heat of the moment it can be hard for her to remember: the point when he was restraining her he didn’t recognise her as his wife and he’s a big man so she was very scared.

    Later that evening he tried to ask her who had scattered the papers and she answered that she didn’t see who came in because she had had a busy afternoon. She then went upstairs for 10 minutes and by the time she returned he had snapped out of it and was calm again.

    This is all so hard, I’m sick with worry. We need a diagnosis and some medical intervention - how long is it supposed to take? The MC appt was just over 3 weeks ago, the head scan was 10 days; but it might as well be 10 years.
     
  6. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,153
    Nottinghamshire
    Your dads aggression towards your mum is obviously a huge worry @Eowyn. Does she have a safe place to go to when your dad doesn't recognise her and becomes aggressive? I think you should let your parents GP know of this latest escalation in your dad's condition and also ask SS for an urgent assessment stressing that your mum is at risk from your dad's aggressive and violent behaviour.

    Tell your mum to keep a charged mobile phone on her at all times and if she feels threatened again she should call the police for help. They are used to dealing with situations like these and can flag up the situation to SS which will help as evidence for needing extra care.
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    When your Dads in this fug you need to call 111, the more medical evidence you have the sooner he will get help.
    This must be terrifying for you all; the confusion & outbursts can be helped with medication. MyMum no longer lashes out - it’s a new experience & I wish I’d got her help sooner.
    It’s the right thing to do as your Dad could seriously injure your mum or you. He’s poorly & needs help
    X
     
  8. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,125
    Toronto, Canada
    I agree with @Bunpoots that she should keep a mobile on her person and call the police if this sort of situation occurs again. It will make a difference if the police are called out. It's something official on file.
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    Having been told myself to call the police on a loved one ( my Mum ) who flew into at times incomprehensible rages - I know how myself I was unable to do that.
    Also depending on where you live & the stretched resources of all of our emergency services nothing is ideally resolved by calling 999.

    So my experience & advice is that 111 is a good way of having a record of these issues & the PWD doctors surgery will receive a record of the issues raised.

    calling the police on a loved one can be for some a last resort when all other avenues are explored.

    I would recommend in my own experience ( not that everything has worked out so brilliantly at times- but improvement was made in care packages) documenting all issues as they happen in an email to the PWD GP, social services - the adult access team if a social worker isn’t appointed, CMHT - if in process of diagnosis & even if not you can directly forward on your concerns, community nurses ; all these people run independently of each other but liase in the care plan of a PWD. personal experience has taught me that by being the liaise pointe means not only do you have contact points but an excellent paper trail of needs & care issues.

    I hope that you receive the help you so desperately need soon
    My thoughts are with you & sending you love & positive thoughts
    X

    ps - my mum is on memantine & the transformation in her aggression is really noticeable. Stay safe x
     
  10. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,153
    Nottinghamshire
    After having been pinned against a wall by a large aggressive man @DesperateofDevon I would certainly be getting myself into a safe place and dialling 999 if I thought he was about to attack me again. This is an emergency situation and needs the input of emergency services.

    If @Eowyn or her mum called 111 they would escalate to 999 anyway in that situation and if an ambulance was sent they’d then call for police back-up.
    The operators on 999 know what they’re doing and will make a judgment call as to who is most appropriate to send in any given situation.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    I totally agree, it’s just as it’s your loved one it sometimes is an impossible situation & you cannot make that 999 call, but the 111 call is easier to make ; that was my experience & I just wanted to say that I can understand how difficult it is to make those phone calls. I totally apologise @Bunpoots if I didn’t express that clearly; I certainly didn’t want to cause offence to anyone. Apologies again .
     
  12. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,153
    Nottinghamshire
  13. Eowyn

    Eowyn Registered User

    Jul 27, 2019
    13
    Hello all. After a difficult few months the results are ready and we are heading to the clinic today for a chat with the consultant. They have referred to the appointment as “feedback”, which has puzzled me a little as I’m assuming this is for a diagnosis and not a “how did we do” type meeting.

    Anyway, Dad is still in denial and doesn’t understand why he’s having to go, but at least he’s still compliant. I’m feeling really anxious and don’t know what to expect either during or after the meeting. I feel as though our lives are on pause while we wait to hear the news we are all expecting but dreading nonetheless.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    Hope it went well
    X
     
  15. Eowyn

    Eowyn Registered User

    Jul 27, 2019
    13
    We met the consultant yesterday to get Dad’s results and I’m now slightly more confused and worried.

    The meeting didn’t go as well as I’d hoped as Dad didn’t allow the doctor time to speak. Instead he kept interjecting to tell him about all of the important people he has known over the years, which he often does as a means to validate himself and prove he’s not a terrible person. It’s his defence mechanism. Unfortunately the doctor did not identify this as denial, as such, and instead put it to him that Dad was demonstrating he didn’t want to continue and he would stop if that’s what he wanted. Thankfully Mum jumped in at this stage and reminded him that he does indeed have trouble remembering things and the doctor wants to help him with that, allowing the meeting to continue.

    When it came to a diagnosis, things weren’t very straightforward there either. Aside from the doctor only being able to speak in short bursts, he told us that the scans showed some furring and plaques, but the area normally affected by Alzheimer’s is ok. However, owing to his symptoms and a family history, they suspect it is AZD and have prescribed donepezil 5mg and given a diagnosis of ‘unspecified dementia’.

    More troubling however was the presence of a bulge in the brain which was why he was referred for a second scan. The results are not yet in for that but the doctor told us that this was outside his remit anyway and Dad’s GP will be calling him in about it. Following this, and in the absence of any further explanation, I googled it and am now more frightened than before. Thankfully Dad is taking meds for his BP and cholesterol, so that’s something at least.

    Once home he fluctuated between suspicion & regret (said he should never have gone, he knew this would happen, they just want to lock him up) and manic highs, which included excitable behaviour and making inappropriate jokes. It took at least two hours’ debriefing to try and help him to see that this would be happening regardless of any conspiracy (I didn’t use those exact words, I’m only summing up on here) and that the doctor was on his side. On reflection I needn’t have tried because his illness affects reason, but it pained me to see him crying - not from the diagnosis, but through paranoia.

    Mum is planning to speak to his GP today to see about the test results, then perhaps we might be able to take one more step forward.

    It is a long road we travel.
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,701
    Female
    Dundee
    I’m so sorry to read your update. What a stressful time for you all. I hope the test results make things clearer for you and you’re able to plan the way ahead.
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,700
    Kent
    Hello @Eowyn

    My experience of these very early stages, with a frightened and paranoid husband, was the least discussion with him, the better it was for all of us.

    It does sound as if your dad has similar fears.

    Instead of discussing symptoms and behaviours in my husband`s presence I used to send letters at least a week in advance of the appointment, telling it as it really was. When the doctors asked the questions and my husband insisted everything was `fine` the letters showed the reality.

    I do hope the medication begins to help your dad.

    This might help you.

    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,585
    My Mum to dreaded the diagnosis & put it off for years.
    Giving a name to how you feel doesn’t change how you feel.
    That’s the line I use continually! xhope it helps x
    Also say a lot you are allowed to be frightened by the name of a diagnosis but it doesn’t change how you feel - but the medication might now help you.
     

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