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 New member

    Jul 27, 2019
    7
    Hello. I’m new here and looking for answers and support regarding my father, who has been displaying symptoms exactly as you have described for about 2 years: behind closed doors he’s paranoid, controlling, aggressive, contrary and dangerously forgetful, but to the outside world he’s charming and playful, managing to pass his forgetfulness off as stress and/or just having a lot on his mind.

    After quite an effort, which first involved my mum and I going to see his doctor to basically beg for help, he was referred to the memory clinic. Getting him there was another battle for us because he kept insisting there was nothing wrong with him, then in more lucid moments he accepted it would be a good idea to go and have a chat. The morning of the appointment came (yesterday) and after claiming he had not be told he was being sent there he got angry and refused to go. My mum managed to persuade him to go, but once inside the clinic he kicked up a fuss and refused to sign the consent form, claiming he was being tricked and that they just want to take his house away from him. The nurse said therefore she had no choice but to end the meeting. So my question is, where do we go from here? The fact that he is clearly showing signs of mental incapacity - he failed all 3 the cognitive memory tests and showed signs of confusion when the nurse tried to confirm his identity - must mean he isn’t in a position to refuse help, or does it? He spent all day yesterday following the appointment sulking in the garden, in the baking heat, refusing to speak to or even look at my mum, and when he did finally go indoors he began yelling at mum that she was mental and needed to see a doctor. It’s so upsetting, none of us know what to do now as we feel like our only lifeline has been lost.

    I must say, finally, that he fell asleep again after he’d eaten his tea (he sleeps more than he’s awake) and woke up at 9pm grinning broadly and making friendly chatter with mum about the programme on the tv. Clearly the events of the day had been forgotten - but not for us. Please help!
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,897
    N Ireland
    Hello @Eowyn and welcome to the forum. You have come to the right place for information and support.

    Unfortunately what you describe is all too common and sometimes a family has to wait for a crisis to occur before the matter is taken in hand by the Health Services.

    You mention the ability to decide and this is a very fluid situation as the person only has to be aware and have capacity in the moment. Due to this people like clinic staff, carers or Social Workers will often step back from a situation - hence the need for a crisis.

    I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in one's own area. If you are interested in these, clicking the following links will take you there.

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Fact sheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

    Members with experience of the situation may be along later to give the benefit of their experience, however, if you want to discuss the overall position with the experts on the Helpline in the meantime, 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

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

    Good luck with everything, dementia is tough enough without such stresses.
     
  3. Pacucho

    Pacucho Registered User

    Dec 20, 2009
    521
    Wembley, Middlesex
    Hello Eowyn,

    I see you have already received some good advice. In addition to this it may be worth pursuing whether the Memory Clinic can do a home visit under the auspices of a "general/annual health check", especially as they now have evidence from the nurse the difficulties you and your mum are facing. If you were give contact details for the memory clinic it is worth pursuing. I know some clinics do this.
    Hope this helps,

    Paco
     
  4. Lawson58

    Lawson58 Registered User

    My husband was and still is in denial that there is anything wrong with him and it took us a year to get a diagnosis. My GP is incredibly supportive and he and I worked out a strategy to get him to agree to the neuropsychological assessment. As my husband was quite paranoid, he insisted that everything and anything I said was wrong and all I wanted to do was criticise him so GP challenged him to do the assessment to prove that I was wrong and he was right. He thought that was a great idea because then he would be able to gloat and tell me how stupid I was.

    So he was given the diagnosis and prescribed donepizil which seemed to calm him down considerably. He did have some tummy problems with it so now uses rivastigimine patches. That was five years ago and he is declining quite slowly.

    I hope that you can get something sorted out soon. The years before the diagnosis were dreadful and we still have our ups and downs but it is easier for to deal with now that he is receiving appropriate treatment.
     
  5. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    Thank you to each of you for taking the time to reply. You have given me some useful advice which I have been following up on and making several calls to the MC and GP. Sadly though I see it all hinges on his actually asking for help, which is unlikely. Things have rapidly declined this last week since the failed appointment, culminating in my dad locking my mum in the porch late at night and then ringing my uncle to complain to him that she was screaming at him from the doorstep. It all happened over a conversation about their wine cooler and that the plug was getting hot in the wall. Mum said to unplug it for now and they would look at it the next morning, but dad started to panic about it being a fire risk. As mum reached to unplug it anyway he locked the door behind her. After a while mum could see and hear him on the phone as it was near the door, and so she started calling out that she was locked in. At that point my dad unlocked the door and freed her. He hasn’t mentioned it since, although he was quiet and sheepish the following day. I feel so frightened and helpless; I’m worried he will hurt mum or himself. He needs help, but as he won’t ask for it, he won’t get it.
     
  6. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    This is so upsetting. We had another difficult day yesterday, which ended with my Dad turning up at mine in tears to tell tales about how loopy (his words) my Mum is, and how she’s hiding their finances from him. Despite me being in the middle of cooking my tea - which he did acknowledge - he sat and rambled for over an hour about how nasty she is. He also mentioned suicide, but not in a way that makes me think he’ll do it, more likely it’s a bad taste comment to articulate how low he feels. I’m at my wits end with it. Last week he made an attempt to exit a moving car, after Mum said something he disagreed with, and she had to grab his arm while he fought her off as she tried to bring the car to a stop. It’s getting to be too much and I’m worried sick for them both.

    The only light at the end of the tunnel is that Mum & I are seeing his GP this week to have a chat about next steps. Following his failed appointment to the MC we’ve had no contact from his GP and I’ve had to make this appointment for us to see him to ask for help. I feel so let down by the system; the GP will by now have received the report submitted to him by the MC, and yet he’s done nothing with it and has not invited Dad back in to even discuss.

    In closing I’d like to ask a question: can the GP prescribe mood stabilisers without the patient being present? He has sufficient evidence to know there is something wrong, but since Dad’s experience at the MC he’s very suspicious of the doctor and so I’m unsure how to get him there to see him.
     
  7. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    441
    The doctor at my mums local mental health trust prescribed risperidone without having seen her. As mum lived alone with no help coming in and got in a muddle with the other(non-critical) medication she took the GP and I thought it wasn't a good idea. Now she's in a care home they are going to get someone in to see if risperidone or similar would help her
     
  8. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    Thank you Sarasa, that is so helpful. I will speak to the GP about it, it cannot hurt to ask after all.
     
  9. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,935
    Yorkshire
    hi @Eowyn
    well done on arranging for you and your mum to see the GP
    don't hold back at all, be brutally honest about your dad's behaviour and how it is affecting your mum (she herself may tend to play things down) as she has a right to feel safe in her own home
    maybe copy out your posts here, they should give the GP food for thought
     
  10. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    Very disappointed after our visit to the GP yesterday. Basically he said there is not much he can do other than to recommend a visit from social services. Feel really let down. When I started to talk about the anger and aggression and he stopped me and started talking to Mum about moving out and/or divorce (yes, really). We were both amazed by this; as my Mum pointed out, he’s sick and she cannot contemplate divorcing him when he needs so much help to just stay alive.

    I asked about medication too, during which he also interrupted me and told me to prescribe without consent (unless the patient requires sectioning) equals assault, is against the law, and he cannot “collude” with us to do it. He made me feel dirty and evil for even asking.

    We both left feeling very deflated and without much hope. He did agree to invite my Dad back in to discuss his visit to the MC, but if Dad does not want to go, or does not agree to any offer of treatment, there is nothing that any of us can do for him.

    It makes me cross to think that despite having permission to speak to the GP on Dad’s behalf, my Mum is unable to obtain assistance for both him and her, and instead we have to wait for Dad to “break a leg” before the problem is picked up during a stay in hospital.

    Our hopes now lie at the door of the social services and the results of a potential social care assessment.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    699
    So this reads like my life since 2014 with Mum. I am so sorry I know how exhausting & draining this situation is. My mum was aggressive towards my Dad & myself & I have found myself locked out as was my Dad on many occasions.
    Firstly it’s a safeguarding issue, the GP has a duty of care not only to your Dad but to the carers & family members whether they like it or not!
    Email the surgery with all your concerns & send a copy to social services.
    A paper trail is very useful.
    Your Mum will have to step back a little from this situation - she must be distraught with this all.
    Age concern, Alzheimer’s uk - phone them- talk to someone please ; I took years before I did this & cant tell you how much I wish I’d done it years ago!
    Keep posting
    Let us know how things are going - believe me it helps.
    ((((((Big hugs)))))) to you & your Mum.
     
  12. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    I don’t want to speak too soon but I think the tide has changed. Mum managed to get Dad into the surgery today as he’s been suffering pain when urinating. I suggested it could be a UTI and, owing the wealth of advice on here, I saw that it can exacerbate dementia symptoms. During the consultation the doctor asked Dad about his visit to the MC and expressed concern that he had left after refusing consent. Dad got defensive at this and insisted there was nothing wrong with his memory and that the woman he saw was an “old goat”. The doctor said he was sorry that he saw an unsympathetic member of staff there, but he must disagree with his assertion that there is nothing wrong with him. He added that Dad is a nice chap and he wants to see him happy, but he cannot help him until he receives a report from the clinic. At the mention of the doctor helping him my Dad then agreed to try again, but added that if “that woman” is there he will refuse to see her. The doctor went along with him and said to basically grin and bear it because once they’ve seen him he will be back under his care. My Mum has also set the ball rolling and is meeting the social care nurse on Thursday to ask for her help if and where possible.

    Finally, he does have a UTI and has been given some antibiotics. I must express my thanks for the shared knowledge and experience within this community.
     
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,438
    Female
    Dundee
    That’s such good news @Eowyn. I’m so glad that your GP seems supportive and sensible! Fingers crossed that things start to fall into place for you all.
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    699
    So pleased that progress is being made.
    Fingers crossed
    X
     
  15. Eowyn

    Eowyn New member

    Jul 27, 2019
    7
    Is this what is meant by sundowning?

    My Dad has developed a pattern of behaviour where he sleeps for much of the day and then wakes up really early in the mornings with severe confusion. Frequently my Mum has gone downstairs to find him agitated because he cannot operate the TV having sat in front of it for hours and unable to turn on the news. She has written this down for him but he still insists he’s never been shown.

    Part of his evening ritual for some time now has included touring the house 2 or 3 times to ensure all windows and doors are closed for security reasons, but lately he has increased these tours to 7 or 8 times, and even gets out of bed to check again, then he gets really angry if Mum tries to reassure him that he has already checked the locks and that he should go to sleep etc. I’ve read lots of advice about how to deal with sundowning symptoms, including to “let it be” if the person wants to do something over and over, which is something she can do, but if this is what he has what practical experience can you give us to help to lessen or try to prevent the behaviour? What has worked for some of you? My Mum is so tired from it all, although she is finding that walking away and leaving him to it is helping to diffuse it.
     

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