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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Jan 17, 2018.

  1. canary

    canary Registered User

    Feb 25, 2014
    10,719
    Female
    South coast
    Hello @Posie and welcome to Talking Point.
    I had to wait for a crisis before my mum got the care she needed. Please do not feel guilty about taking a step back. Why not look around at local care/nursing homes now, so that if/when a crisis happens you know what the places are like. Make a file containing all the details of local dementia facilities so that you have them on hand for when they are needed.
     
  2. Nitwit

    Nitwit New member

    Jan 19, 2018
    5
     
  3. Nitwit

    Nitwit New member

    Jan 19, 2018
    5
    Many thanks for your reply and it is indeed reassuring to have a platform like this to voice your emotions and thoughts. The journey is approximately 30 miles each way that is not too bad and my old dog and I have got a routine going each day that we have had since 4/9/17. Particularly bad day today that had me in tears with Marilyn suffering from delirious panic attacks screaming and shouting and not settling. The MAGNIFICENT staff there catered for every need and called the doctor out in case she had another UTI. Before I left, the exceptional Sophie told me that she would give her one to one attention and sat down with her comforting her and even got her knitting that is the first time she has shown any interest in anything despite all the attempts of the staff to introduce her to all sorts of different recreational activities. Knowing how depressed I was Sophie even took the trouble to call me at home to see how I was and tell me that she had settled Marilyn down!
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hi Nitwit
    well, all I can say is you're no nitwit at all - you've found your wife a cracker of a care home - they appear to be looking after her really well - how kind of the staff member to call you
    a family dog is a real friend at times like tnis
     
  5. SunshineandRockMusic

    Jan 21, 2018
    2
    Hi everyone,

    Just been feeling very alone the last few months and I am hoping to talk to people who understand what it is like to care for someone with dementia. My mother was diagnosed with early onset dementia as a result of a stroke when she was in her early 40s and I was still a teenager. We are nearly ten years down the line now and I feel like I am floundering. There is only me so I don't really have anyone to help out or talk to about it. She's so angry all the time now and it's pure venom towards me. I know my head tells me it's the dementia but, on those really hard days, it's so difficult to hear.

    Anyway, thank you for taking the time to read this. x
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @SunshineandRockMusic
    a warm welcome to TP
    with all the members here to chat with, you're not on your own any more
    what a lot your mum and you must have been through over the last few years
    do you have a local carers group to go talk with others in a similar situation
    you have a right to a carer's assessment which might be a way to access some support - contact your LA's Adult Services
    and keep posting here, there are plenty of folk to offer sympathy and suggestions and share experiences with
     
  7. SunshineandRockMusic

    Jan 21, 2018
    2
    Thank you. No local carers group unfortunately. I'm not sure if it was because of our ages or something but we never given any real direction or support. At the time, you just think you will be fine. Now, I'm at a point where I just haven't got a clue anymore. Thank you for your suggestion. I will certainly look into the Adult Services and see what is available.
     
  8. R-l Baksh

    R-l Baksh New member

    Jan 22, 2018
    2
    Hello everyone, I am so relieved to find this site. I have been clueless in figuring out what has been happening with my dad and this site has offered suggestions and help in getting me some answers...Even though I am new here, already I want to say thank you for sharing your experiences and your suggestions.
     
  9. Tiggybarnmung

    Tiggybarnmung Registered User

    Oct 17, 2016
    1
    My name is Jane and my mum has dementia. She swears and shouts a lot and won't let anyone help her. But she only eats marmalade sandwiches, never showers and rarely changes her clothes. I tried social services, dementia care and no one can help because her behaviour is so challenging and I am at my wits end. I should also say my dad is ill so is unable to care for her any more.
     
  10. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Welcome to the forum. You will find this a friendly and informative place.
    I have already posted a reply on your other thread.
     
  11. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi Jane, welcome to TP
    Assuming you're in the UK then google "Vulnerable adult assessment" and the name of the local authority they live in, you should be able to request and assessment for them both on-line.
    If they fobbed you off on the phone then that's lesson 1, never do anything on the phone you can do on-line or in writing, start a paper trail, that way it's all on record.
    Once you request an assessment then by law they have to do one, it doesn't matter if they're rich or they're poor (as someone once sang) if you request an assessment they have to do one.
    K
     
  12. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Hello and welcome to the forum. Although it's a sad situation that has brought you here you will find this a friendly and informative place.
    Your mum's behaviour may be explained by the fact that her dementia has left her scared and confused and also unable to communicate her feelings in the way she once could. A read at this thread https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ may help.
    The food thing can be a result of her taste being affected by the disease as sweet and sour tastes are sometimes all that is left. Maybe trying sweet fruits would work and be healthier.
     
  13. Posie

    Posie New member

    Jan 21, 2018
    2
    Thank you @canary, that's a good idea to collect up the information somewhere - it's always good to do something practical when I can't think what I can really do for the best too!
     
  14. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,077
    Yorkshire
    hello @Tiggybarnmung
    I hope you've seen the responses from karaoke Pete and Kevinl
    I'm concerned that you say your mum's behaviour is challenging and that's why no-one will help - and also that your dad is ill and unable to care for your mum
    contact their GP and tell them exactly what the situation is and say both need help, so a home visit is needed and a referral to Adult Services - don't just phone, send them a letter and/or e-mail (ask for a response) so there's a document trail to show you have raised your concerns
    and I agree - go back to their Local Authority Adult Services and say an urgent re-assessment of both their care needs is required - say that both are 'vulnerable adults' and each is 'at risk'; your mum because of dementia and her behaviour; your dad because of his illness and his wife's behaviour - make it clear that your dad has reached carer breakdown and cannot cope with caring for his wife - let them know that you know the LA has the 'duty of care' and you will hold them responsible if anything happens to your parents - ask that some respite be organised to give your dad a chance to recuperate while his wife is looked after
    and don't be afraid to tell Adult Services that you cannot take on their care - otherwise you may well be left to carry on
     
  15. bemused&confused

    bemused&confused New member

    Jan 22, 2018
    2
    Hi, I'm new to this Forum. My mother has not been diagnosed yet, but over the last two years since a minor car accident, her memory has deteriorated substantially to the point where she does not know what month it is, what year it is and has no recall from conversation after five minutes. I believe some of this is due to a urine infection which she has had for five years. She did have some treatment over two years ago, but decided not to pursue this as she saw it as a waste of time. I don't think that going to the loo every 20 minutes is normal, nor the moaning that accompanies it. She is a very determined, obstinate and independent woman. So over the last two years she has continued to suffer whilst being adament that she does not need treatment. I have tried to organise appointments to the Medical centre, but the first time in June 2017 she flatly refused to go when I went to pick her up. The second time was a couple of weeks ago when the appointment had been agreed by mum and arranged at her home with the practice nurse who had called on her at my request (and desperation). However, when I took her to the surgery she said she was going to cancel it and didn't need treatment. and wasn't going on with it. The whole episode was so distressing for her and me that I have given up on this route. She became violent and abusive hitting my husband around the head when he tried to gently restrain her in the surgery. At the moment I have managed, with difficulty, to arrange for a practice nurse to call on her at home to assess her personal health. She is unaware that it is me (which makes me feel like I am lying to her) she thinks that the medical centre are just checking on their patients if they have not seen them for a while. I feel guilt, frustration and helplessness in the current situation. The practice nurse has said she is very clever in hiding what she can't recall and has substantial memory loss. Lately, she has begun to talk about 'children in her bed' and she constantly thinks that my sister (who has lived in France for over forty years) is with us on our outings. This can happen in the matter of 20 minutes, usually after she has been to the loo.
     
  16. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,033
    Male
    Bristol
    Hello @bemused&confused and welcome to TP.
    Sorry your mum won't accept help. Lying about the practice nurse coming on a routine visit is a good tried and trusted ruse, so if it means your mum gets help starting with Anti Biotics for a possible UTI then don't let guilt put you off.
    Best of luck.
     
  17. bemused&confused

    bemused&confused New member

    Jan 22, 2018
    2
    Thanks for your reply. I'm not a good lier! This is hard and I know I need to toughen up a bit to be of any help to her, even if she doesn't want me to. Like so many others say on the forum 'This isn't my mum'...
     
  18. Goodenough

    Goodenough New member

    Jan 19, 2018
    4
    Hi, I have just joined this forum (is that the correct term?). I have joined as I have just taken my Muim out of residential home and am caring for her myself in our own home. She is very ancient, and very forgetful. Dont know if it is dementia. She has improved since coming to live with us (only second week), and is now smiling, initiating conversation, and generally much brighter. I have to have night carers as she is up about 12 times a night going to toilet. I have agency carers who sit with her to enable me to get away for a couple of hours. I have it a lot easier than many carers, but am finding the adjustment to not being able to go out unless carer here quite hard. My mother cannot be left alone as there is a high risk of falling. Sometimes, although I know many would love to have their parent to care for, I feel at a low ebb and would love someone to chat to about care and non care topics. Every day is providing personal care for mother, taking her to toilet, cleaning, washing and cooking, Husband is pretty good on whole, but is feeling hard done by as we cannot go away together on holidays, and he may go away on his own. (not good for relationship, I fear).
     
  19. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    Regetably you’ll become deft at loving lies, always be positive, “everyone at *age gets this offered, it’s your right” . Browse through other posts and threads and you’ll find many of us deserve an Oscar. Remember, when you feel guilty you’re doing it for the best of reasons.
     
  20. geo-b

    geo-b New member

    Jan 15, 2018
    1
    Hi, my name is geo - b I’m 62years old and I’m from Northern Ireland I have been diagnosed with vascular dementia just before Christmas and two years ago I was diagnosed with bladder cancer and been in hospital three times now to have the tumours removed. This is my first time on any forum and joined to try and understand more about vascular dementia and what to expect.
     
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