1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Creacon

    Creacon New member

    Nov 15, 2019
    1
    Hello
    I have now been living with my parents as their full time carer since May. Mum has Alzheimer’s and Dad is in a wheelchair and starting to become a little confused about dates and anything IT related.
    The plan was for Mum and Dad to buy a flat in sheltered accomodation, but we realised just in time that this would not be enough, so we have rented a house together. We are now 5 with my husband and 14 year old daughter.
    It’s been quite a rollercoaster.
    I have given up my job and am gradually rebuilding a life, finding dementia cafés and local community activities to take my parents to.
    What I really struggle with is how to respond to Mum’s unpredictable and very changeable states of mind. Sometimes she is afraid of getting into trouble and being shouted at. No one shouts at her. She will shout when she feels frustrated and angry. There are days when I just don’t find the right words. Whatever I say does nothing to calm her fear and the anxiety often turns into a resentment, where she will say that she is a liar and she’ll say whatever we want, then we return to the notion that she will not get into trouble if she says what we want.
    I find this so hard to be with. I love my Mum but I run out of resilience and just want to minimise my interaction with her. Then I feel guilty for being so selfish.
    I wish I knew how to be better for her.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Hello @Creacon you are welcome here and I hope you find the forum to be a friendly and supportive place.

    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, such as the Memory Café that you have already found, in ones 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 Factsheets 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., if any of that hasn't already been done. There is also a Dementia Guide in the list.

    As communicating has become a bit of an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  3. charlie10

    charlie10 Registered User

    Dec 20, 2018
    376
    welcome to the forum @Creacon.......I'm not a hands on carer, but looking at what you have taken on, caring for your parents, supporting a husband and raising a daughter, no wonder you get frustrated and want to take time out from your mum. However much we love someone, we do sometimes need a bit of appreciation, or at least acknowledgement, for the efforts we're going to.....we're all human, not saints (tho I think many carers might be.....!) I'm sure you know this is the disease not your mum, but I expect it's hard to always keep that in mind when she catches you at a low point!

    There will be other more experienced people along soon to give you good advice, and you may not have come across a post called "Compassionate Communication" which may give you some ideas for interacting with your mum in a way that keeps her happy and is less stressful for you (sorry, can't remember exactly where CC is but I know someone else will post it for you). Keep posting, this forum is such a good support :)
     
  4. Andrew_McP

    Andrew_McP Registered User

    Mar 2, 2016
    224
    Male
    South Northwest
    First, whenever you're struggling, hang on to the fact that you're doing something that even professional carers working in shifts struggle to do. Some folk drift quietly and calmly into a bewildered, demented world of their own, but an awful lot go kicking and screaming into their decline, or are so emotionally turbulent that it's impossible to manage them successfully without a little chemical assistance.

    My mother was prescribed lorazepam, which I use very sparingly (half a milligram) but usually very effectively (sneaked into a piece of fudge or cake) when she gets herself in a real state. But for a long time I struggled with her paranoia, fear and frustration, and didn't dare to use the lorazepam as much as I should have done. We all live and learn, but when you're at your wits' end it's hard enough when you're dealing with one confused soul and no other responsibilities, like me; you have a lot on your plate!

    Assuming you have no chemical assistance to fall back on, the only way I could ever get anywhere with my mother was -- and still is, but she's less angry these days -- to accept her version of the world as true. Listen to what your mother's saying... really saying, sometimes it's not what you think they're saying... if that makes any sense! For instance my mother spent a couple of years wanting to 'go home' all the time. But sometimes she meant her bedroom, where she felt safer.

    Of course often it's 'just' garbled, incoherent stuff which you'd need an Enigma machine and Bletchley Park to decode. But you have to try. Accept your mother's reality and try to work out how -- if you were her -- you'd want to get out of that situation. Agree with her, try to become her confident rather than the person correcting her... to her it will feel like you're just constantly telling her she's wrong, wrong, wrong, even if you're trying to gently guide and help her.

    Mmm... it's so easy to pretend we know what we're talking about. I read this back to myself and I wonder if it would have helped me back when I was starting down this journey with Mum. Probably not! But you really do have to try to enter their world and try to work out what will give them at least a little comfort. My mother could sometimes be placated by me pretending to call the Police and talk to them about whatever issue was troubling her. I tried ringing her on the landline once and putting on a fake voice, but that didn't work. :) But you get desperate.

    I'm now desperate to get to bed, so I'll cut and run. But I couldn't disappear before at least trying to help a little. The nights can be very long when there's stuff on your mind.
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,960
    ((((((((((Hugs)))))))))))
    I don’t have the words right now so sending love & ((((((hugs))))))
     
  6. Avis

    Avis Registered User

    Nov 2, 2019
    67
    Being a carer is the hardest thing I have ever done. I don't think other people realise the depth of commitment it requires but we are all human and we do run out of energy and patience every so often. Take care of yourself and give yourself the same advice you would give to a friend in the same situation. Be kind to yourself. We are all in a similar position and send our loving support.
     

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