1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Hello. I am really concerned about my mum. She is 72 and over the last few months her behaviour has changed considerably. She doesn’t appear to have issues with her memory but can suddenly become aggressive and so angry. She has become obsessed with time and will spend hours telling me that she can tell the time. She has started to bang doors and surfaces while ranting about time; this seems particularly linked to the tv schedule and her bedtime. It seems to be particularly bad late afternoon into the evening, I thought it was contained to the house but on Christmas Eve, I was approached by the manager of a cafe she goes to, daily, with my dad who asked if everything was ok. She has been banging the table there and shouting at my dad before walking out.
    I don’t know what to do. She won’t go to the GP and thinks that nothing is wrong. She sees no issue with her behaviour at all. My dad is 84 and in denial. I dread going to visit them. I can’t bear the thought of seeing her like this, knowing she wasn’t accept any help. I feel awful not being there for Dad - he tells me everything is okay. I can’t get him to ask me for help and I know he won’t accept any either. I was still supposed to be with them tonight but after a particularly tense two days, I had to leave. I’m now at home worrying about them both feeling totally lost. I am planning to call her GP tomorrow but knowing she won’t go to any appointment or acknowledge the issue I’m wondering what else I can do.
     
  2. Sam Luvit

    Sam Luvit Registered User

    Oct 19, 2016
    5,472
    East Sussex
    Denial is pretty common unfortunately. Many people have found a way round this, with the help of “love lies”, or telling an untruth for the best of reasons

    Phone your mums GP & explain the situation, accept that the GP cannot discuss your mums health with you & tell them you know this & are not asking for information, but giving them the facts as you know them & asking them to act in your mums best interests

    Ask if the GP will call your mum in for a “well woman” check to assess her. Hopefully, her GP will be able to run a few checks & start on finding an answer

    There are many possible reasons for her behaviour, so don’t automatically assume the worst. Your mum may well be worried about what is wrong & by not seeking a diagnosis can pretend all is well

    Keep posting, there’s usually someone around who can listen & make suggestions
     
  3. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Thank you. I will call the GP tomorrow. It seems her behaviour got worse after i left. I worry she won't attend any appointment but will make sure I ask the GP to act in her best interests. That is really helpful advice, thank you
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Hello @Aitchkbee, welcome to the forum.

    If you have further trouble getting your mum to the GP maybe a chat with the hel line would get you a few pointers as to what to do, 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

    Monday 31 December (New Year's Eve) 9am – 5pm
    Tuesday 1 January (New Year's Day) Closed
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    Hello @Aitchkbee Welcome to the Forum.

    I hope your mum has a good GP who will take action on her behalf. It might help if you put your concerns in writing, the behaviour which causes concern and the timing of her challenging behaviour. If it is worse at specific times of the day it may be significant.

    Your dad may be in denial because he is overwhelmed and frightened. It is often easier to be in denial than to take action.
     
  6. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    I called mum's GP yesterday to explain my concerns and she has agreed to send a nurse around 'sometime' next week. I just don't know how, or if I should tell Mum. The GP said she would go under the guise of a wellwoman check up.... I'm not sure how mum will react if she thinks I'm involved....
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,739
    Yorkshire
    hi @Aitchkbee
    personally, I would just let the nurse deal with the appointment - your mum may show her symptoms more clearly if the visit is unexpected or she thinks it is just what the GP organises - and it may help to keep you as the 'good guy'
     
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    919
    Personally I wouldn't tell her. If she says something afterwards just say this is normal for the GP to arrange these sort of check ups. My MIL never wanted to be seen as different from anyone else
     
  9. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,414
    Female
    Definitely don't tell your mum beforehand, it will just make her agitated. She may be more likely to accept it if the nurse turns up unannounced. There is no reason she will think you're involved unless you tell her. Well done on getting some action from the GP.
     
  10. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Hi all. I can't believe where the times goes. Mum's behaviour is getting progressively worse. I'm in touch with her GP but with no knowledge of whether or not Mum has actually been seen, I'm wondering what else I can do. I wrote to the GP, spoke to her and called the council's adult social care team. But without mums consent there's not a lot they can do or tell me. I've been advised to keep in touch with the GP.

    I feel like I'm not coping with any of this. Then I feel awful as my situation seems much better than it could be. My Dad is still in denial and they are both now lying to me about how things are. I am totally lost.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    Im sorry @Aitchbee
    Unfortunately you have probably done everything that you can at the moment. All the while your dad refuses to acknowledge the situation no-one can take anything any further. Many people have to wait for the crisis before they get the help they need and I feel that this is what is likely to happen. Be ready to pick up the pieces and at least the GP and SS are aware of the problems.
    (((((((((((((((((hugs))))))))))))))))
     
  12. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,739
    Yorkshire
    not an easy situation for you @Aitchkbee
    sadly, it's now a waiting game .... just keep the GP updated as suggested, keep a journal of what you notice for evidence later
    maybe don't mention any of your concerns with your parents, just visit, take treats and help out quietly when you can .... that way maybe they will not see you as against them in any way and will feel they can call on you when they need to .... and you take some pressure off yourself
     
  13. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Evening. Me again. It’s been a while and for a short time things seemed stable. But things have changed in the last few days.

    I did get in touch with the local adult social care team who seemed positive they could help. After a couple of phone calls they agreed to just pop round unannounced to assess the situation under the guise of a wellbeing check. This didn’t happen. They phoned first and both mum and dad stated they were fine and didn’t need help.

    I decided I did need help and have started counselling which, while it’s still early days, looks like it might be some extra support for me.

    But now, after a particularly stressful Saturday, I feel like I’m back at square one. Mum has declined again, seemingly over a matter of days. During my visit at the weekend I begged Dad to talk to the doctor and told him that although I could only imagine what it was like for him living with this 24/7, I was finding things increasingly hard to cope with and don't want to come home as often....he said he couldn’t explain it but he just didn’t want to call the doctor.

    My sister has spoken to him today and he is apparently now ‘thinking’ about calling the doctor.

    Should I call adult social care again? Would explaining that Dad is close to excepting the situation perhaps prompt some action? Someone suggested to me that staying away for a few days may actually help.....if I’m not there to deal with things and calm the situation, Dad might accept how bad things are? He wouldn’t be able to deny it?

    Where do you find the strength? Right now I want to hide from everything and everyone. How can I explain that both parents are now vulnerable and need help; but don’t seem capable of making this decision..........

    Sorry for the rambling - I thought I had things under control but in a matter of days feel completely lost again...... Mum needs support and I can’t get it for her
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    I would contact the doctor, because symptoms that come on quickly could be caused by an infection

    It sounds heartless, but I think that staying away for a few days soon might be the best thing.
    All the while you are there your dad doesnt need to face the fact that he needs help and it also sounds like you need a break.
     
  15. MimiLexis

    MimiLexis Registered User

    Mar 31, 2019
    25
    God bless you! It must be so hard when your parent digs their heels in and refuses to accept anything is wrong and wont admit they need help.

    Our parents are suppose to have things under control and they are grown not needing help, this is so not the case all too often when our loved ones age and things are not how they use to be.

    I think until dad admits defeat and has no option but to ask for help, things will pretty much stay as they are.

    We realised simething was amiss with daddy several years before his diagnosis and it took my brother calling our GP like you did and airing our concerns. GP called him in for an appointment and he could clearly see what our concerns were. This started the process of the very long and intense series of tests which in the end gave us his Alzheimer's diagnosis.

    Daddy knows he has Alzheimer's but I don't think he knows what it means to be honest. He never talks about it and he hasn't ever mentioned it over the last 3 years.

    I live with daddy and do everything for him. You will get there and it will be a long process but it will be worth it in every way. I pray your dad comes round to the idea as soon as possible so you can access the help your mum so clearly needs. Good luck ((hugs))
     
  16. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Thanks for the support. I feel so lost and overwhelmed and that I'm letting them both down so badly.

    I have just had a message about mums behaviour and it seems she went out in just a cardigan today and lashed out at everyone. I've left a voicemail for adult social care but with Dad now admitting she needs help but refusing to ask for it (is it a generation thing, he is 83?) I just don't know what to do.
     
  17. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Dad finally wen to the GP yesterday and a nurse practitioner saw mum this afternoon.

    I had more information about Mum’s behaviour over the weekend from the staff in their local cafe. The decline seems to be so rapid now. I called ASC and the GP on Monday unaware that Dad had finally gone too.

    Long story short.... Mum will need blood tests to rule out any other possibilities but did allow some tests to be carried out at home today and it seems we are now one step closer to an official diagnosis.

    I can’t believe that Dad went... after so long. I’m so worried about him at the moment. He is 85 (typo in my last post put him at 83... he’d prefer that!!!) and suddenly seems so tired and overwhelmed.

    I am relieved but still anxious. Grateful but still concerned. I’m exhausted.

    xx
     
  18. canary

    canary Registered User

    Feb 25, 2014
    9,881
    Female
    South coast
    The first step is the hardest one.
    I hope you get some help soon
    xx
     
  19. Lyd

    Lyd Registered User

    May 27, 2019
    28
    dont tell her. but if you dont tell her dont tell your dad if you think he will tell her because that would be a worse way to find out. :eek:
     
  20. Aitchkbee

    Aitchkbee New member

    Dec 26, 2018
    9
    Evening. It seems that we hit the crisis point today that we were warned was coming.

    Mum got a GP diagnosis of frontal lobe dementia, with sun downing about 3 weeks ago and since then has had what the GP described as an excellerated decline. I went over this afternoon to take mum and dad to a funeral and was heartbroken to see that mum had an infected finger where she had a ring on that had become so tight, her finger so infected that she may well loose it. I was surprised that she agreed to go to the GP who sent her straight to A&E. I was able to express my concerns to him about her decline but he could see for himself how bad it was.

    We went to the hospital and the staff were incredible. There are no other words. Mums behaviour was appalling. She was aggressive, violent outbursts and extreme repetition. I felt so ashamed and then guilty that I was ashamed.

    Long story short...she’s been admitted and from the evidence doctors saw, is unlikely to return home. She will be treated for the infection which will hopefully save her finger and then they will place her in a home, but, I left her there. I can’t believe I left her there. I feel I abandoned her. I know it is for the best, for her and dad. But I feel awful. I know things can’t continue at home. She simply isn’t safe at home. And Dad, who seems a lot more accepting of the situation seemed so low these last few weeks that I’m relieved for him.

    But how do I get over the guilt. Have I done the right thing?
     

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