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  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.

Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Sep 21, 2018.

  1. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Hello and welcome from me too @Stressed1234. No need to apologise for a rant as one of the reasons the forum exists is to give people a space to vent feelings/frustrations. We all understand.

    Depression can become a big issue in Dementia and social activity can help with that as well as the dementia itself. The confusion of dementia can make people become withdrawn and refuse help so leading to social isolation and depression etc. It may help to check out support services in your area as something like a Memory Café where both people with dementia and carers can meet can be very useful - just in case this is happening to your mum.

    If you think it's worth a try you can use the following links to see the informative AS Publications list and check your post code for support services

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
    https://www.alzheimers.org.uk/find-support-near-you?
     
  3. Trgg

    Trgg New member

    Oct 25, 2018
    1
    Hi My mum has dementia she's 81 and being cared for at home by my 83 father. I live close so visit them every other day . I try to also take them out as often as I can. Having a full time job means that I'm not always able to attend all asess ments or visits by the elderly mental health care team. Although my boss and work are really supportive and would always allow me the time of to attend. I struggle to always ask for the time off as I value my job and still want and to be honest need to be able to give my full commitment to work. I enjoy my job. But this doesn't stop me feeling so guilty about not being there. As I live close I will always be the first point of contact if my father needs immediate support and help with Mum when she is confused , upset or convinced that she is not at home and wants to leave. Does anyone have any good tips about the best way to reassure my mum that this is her home. I tend to try and talk about items in the room and when mum and dad acquired them but this doesn't always work. Thanks
     
  4. Jackski

    Jackski New member

    Oct 26, 2018
    2
    Hi,my family and I are just starting the process of getting a proper diagnosis for my mum who is in denial with regards to how bad her memory is.Although I have support from my Sister & Brother we are all new to this and so I hope to learn more through this forum of people's experience and how they cope with certain issues.
     
  5. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,728
    Male
    Bristol
    Good morning and welcome to TP Jackski. Sadly, an element of denial is normal with Dementia and memory problems, my OH was diagnosed 6 years ago and still struggles to accept what is happening to her. Having your sister and brother supporting you and your mum will help, but if you need any advice or just a place to let off steam this is a great place. When you are ready then if you post on the forum for seeking a diagnosis at https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/ you will get more specific advice and more relevant threads.
     
  6. Silversoul

    Silversoul New member

    Oct 26, 2018
    2
    Hi there just need support family are pushing for a dementia diagnosis for...parent lots of complicated agendas,being drawn in .
     
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Hello @Silversoul, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    I hope that you get a diagnosis sorted and in the meantime would invite you 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 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.

    Now that you have found us do keep posting with any questions or observations.
     
  8. try again

    try again Registered User

    Jun 21, 2018
    270
    Hi silver soul, an early diagnosis is helpful to check if any memory problems are because of other reasons. Also there are meds some people can take to help combat the symptoms.
     
  9. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,728
    Male
    Bristol
    Welcome to TP @Trgg. Sorry to say that even after 6 years I have no way that guarantees my OH will feel reassured when she gets agitated or wants to go home ( to a safer place where the world made more sense most people think). Patience and persistence are sadly the only guide. There is an old thread on compassionate communication which may give you some guidance on things to say or do https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/. People often feel intimidated by it and guilt at not always succeeding is part of caring, but you will find plenty of good advice and support.
     
  10. shazza18

    shazza18 New member

    Oct 26, 2018
    1
    Hi - my mum was diagnosed with alzheimers and vascular dementia in January this year - mum is 89 and still fairly active in that she lives alone, washes,baths, dresses, cooks her own meals, and enjoys doing her 'jobs' ie housework etc. which is all great - but its all the other things that are hard to deal with. Having read some of your posts I now realise how much harder my own situation could/will be but there are days when I feel very frustrated, guilty, and feel that the pressure builds up and i think i cant do this and that i should be a better person. I am attending a crisp 2 course next month so hoping this will give me some guidance on how to handle all these different things that keep appearing its all so very hard and i feel like i am drowning with the worry and responsibility of it all.
     
  11. Annakey

    Annakey Registered User

    Oct 26, 2018
    26
    Female
    hello. Husband has had Alzheimers for 3 years. Still in denial so I can't easily discuss things with him. He will see the dementia nurse but is all jolly and friendly whilst there and then criticises and moans afterwards. Does that with other people although the mask slips sometimes and people see how horrible he is to me.. Refuses to believe his behaviour is affecting my health and laughs in my face if I say I feel stressed. He used to be a kind sensitive man. I now dislike him and want out but know I have to put up with it. So I'm looking for how to deal with things and work how can I escape from the day to day misery.
    I'm not a 'born carer' and get no pleasure out of having someone so dependent on me. I don't mind shopping cooking, looking after finances but I can't tolerate his behaviour and when he can't look after his personal needs I won't be able to do them for him.

    I do have friends and interests and I am fighting to hang on to these as I'm not prepared to give up my life and become a full time carer.

    I suspect I come over as uncaring but I'm not it is a matter of how to survive with my health and personality in tact.
     
  12. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    Hello, @Annakey ....welcome to Talking Point. You don’t come across as uncaring at all...overwhelmed, maybe. It is a vile illness, and a horrible one to be a carer for. You will find this forum is a good place to vent these feelings, because the members here really understand what it is like. If you have any specific questions or concerns you will also find the members are a good source of support and information.
    Are there Admiral Nurses in your area? They are there to support carers, and in my area (Kent) the Altzheimer’s Society and Age U.K. provide a lot of support and practical help.
    Personally, I think it is good that you have boundaries about what you will and won’t be willing to do.
     
  13. Annakey

    Annakey Registered User

    Oct 26, 2018
    26
    Female
    thanks you Amethyst59 I will find out about Admiral nurses.
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,268
    Female
    Dundee
  15. doubledevondream

    doubledevondream New member

    Oct 27, 2018
    2
    I thought I was intelligent until I came to this website! Maybe I`m just too old to cope with 21stC tech.? Anyway, maybe I`m communicating with another human or maybe it`s all just shooting into outer space. Hello, the Mekon!
    J. is probably in the later stages of Dementia; I`m not sure, because no one seems to be prepared to describe how those stages may manifest themselves. I think she peed on the stairs last night; it was either her or the cat, but today I caught her dropping her trousers and about to pee, presumably, on her armchair. How to get around that then? Pads are pointless, she can drop those too; so, do I shadow her 24 hours a day? Or cover the furniture in plastic sheeting?
    Like the plastic, how thin is the veneer of civilisation.
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,728
    Male
    Bristol
    Welcome to TP, doubledevondream. You have reached a human being whose partner has vascular dementia, but sadly I'm not much help on this problem. Have you tested your partner for a UTI as that can make anyone with dementia act strangely. The beauty of this place is that someone will have better advice if that is no good.
    https://www.alzheimers.org.uk/about...-progresses/changes-in-behaviour-later-stages or https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/how-dementia-progresses may give some insight into how dementia progresses.
     
  17. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,339
    leicester
    Hi @doubledevondream welcome to TP, I’m sorry though that circumstances are such that you needed to find us.
    It sounds as if you are really at the point of needing extra help, maybe a new appointment with the consultant or the GP so you can understand just where ‘J’ is with regards to the diagnosis at this time.
    Also have SS been contacted to do a needs assessment and a carers assessment to see what help is available?
    I hope now you have found us.. mainly humans.. you will continue to post so you can get the support you need.
     
  18. SteveC59

    SteveC59 New member

    Oct 25, 2018
    2
    Hi, My name is Steve, I have a question, is this forum for paid care workers as well as unpaid carers?

    Many thanks
     
  19. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,268
    Female
    Dundee
    Hi Steve and welcome to the forum. Paid care workers have used this forum but it is important to note that it is against the rules of the forum to post as a professional - i.e. give advice as a professional.
     
  20. Arta

    Arta New member

    Oct 28, 2018
    3
    Female
    Australia
    Hi - my mum was diagnosed with mixed dementia 4 years ago she is only 62. We live in australia. My sister and I share care of mum. We are struggling with her refusal to take a shower. We need to give her 2-3 valiums before we can even approach the subject let alone approach her. This is really hard
     
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