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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. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    4,036
    London
    #1 Mark_W, Jan 17, 2018
    Last edited: Jan 17, 2018
    Welcome to Talking Point :)

    This thread is for all our new members to say hello and tell us a little bit about yourself. For example, about your connection to dementia and your reasons for joining.

    Just click on the blue "Reply to Thread" button above this post, type your message and click the blue "Post Reply" button to make your first post.

    If you've got questions about how to use Talking Point click on these links below.
    • You can find answers to frequently asked questions here.
    • Our Help videos will show you how to navigate the different areas of Talking Point.
    • We also have a Quick Guide explaining how to use Talking Point including logging in, posting, replying, checking private messages and searching.
    • Also we recommend having a read through our Guidelines which are some useful tips and things to remember when posting.
    If you just want to know how to post your own thread please read on.

    Posting on a small screen
    (Click on the images to enlarge them)

    Firstly click this link to see a list of our forums: https://forum.alzheimers.org.uk

    Then scroll down and chose the most appropriate forum by clicking on it's name.

    Forum List Mobile.PNG

    When you're in a forum, click on the blue "Post New Thread" button.

    Forums Mobile.PNG

    Then, type a title, add your message and click 'Create Thread'.

    Post New Thread Mobile.png

    Posting on a big screen
    (Click on the images to enlarge them)

    Firstly click this link to see a list of our forums: https://forum.alzheimers.org.uk

    Then scroll down and chose the most appropriate forum by clicking on it's name.

    Forum List.png

    When you're in a forum, click on the blue "Post New Thread" button.

    Forums.png

    Then, type a title, add your message and click 'Create Thread'.

    Post New Thread.png

    If you have any questions about using the forum, please don't hesitate to contact the Talking Point team as we're here to help.

    We hope you find Talking Point helpful.
     
  2. Tubs1957

    Tubs1957 New member

    Jan 17, 2018
    6
    Hi I’ve just joined this site.
    I’m from Kent. I’m an only child. My 93 year old father has been in a nursing home since July 2017. He suffers from undiagnosed dementia and for the last year has been in a world of his own. Since a 2nd chest infection just after Christmas, he spent 10 days in hospital. He was pulling feed tubes and iv tubes out and taking very little food and drink by mouth. The decision was made to return him to the nursing home for end of life care. I agreed with this course of action. I haven’t been to visit him and the care home understand my decision not to, as I want to be left with memories of him in happier times. He doesn’t have a clue who I am, so a visit would not be advantageous. I gsther he is pretty much sleeping all the time. It feels so weird that although effectively he’s gone, he is still with us and I know at some point I’m going to get the inevitable phone call, I can’t believe he’s still here after all he’s been through and the state he’s in. Dreading the phone ringing but really wanting things to be over with now for all our sakes. Thanks for reading my epistle!
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hello @Tubs1957
    and welcome to TP
    such a sad reason for you to join us
    you'll find there's lots of information here and on the main AS site - and lots of understanding and sympathy from members
    best wishes to you and for your father
     
  4. Mipsydoo

    Mipsydoo Registered User

    Jan 16, 2018
    14
    Female
    Hi There ,
    My mums recently been diagnosed with the early stages of alzeimers & when not sleeping , over thinking , i came across this forum . Hoping to get advice and how to cope from people experiencing this same situation . I had suspicions about my mum for a year , conversations we had , repeating or forgetting . Eventually came to a head when my Mums work colleagues raised concerns about her welfare which luckily pushed the doctor appts and the recent memory clinic diagnosis. We are awaiting a brain scan but unfortunately my Mum believes i tricked her, believes shes ok & is ignoring me. I know its part of the illness but im not the strongest emotionally . Though i try to not take it personally , try and be delicate with her but it seems im not in her good books . I cant help but think of the long road ahead but i have grabbed optimism from posts ive read. Im hoping i can hold on to the Mum i love for many years to come & we can fight this thing together
     
  5. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hello @Mipsydoo
    and welcome to TP
    I'm glad reading around the threads has already been of help - I think that's the strength of TP, that we each come here feeling that there's no-one else in the same boat and no-one understands, to find a whole community of folk who also have dementia in their lives and generously share their experiences
    well done for getting the diagnosis process underway for your mum - sadly her responses isn't at all uncommon, as you've been finding out - I'd say as much as possible don't mention it all to her, just be there for her as you always have, but work away in the background to be as prepared as you can
    posting here will help a lot -so settle in and start your own thread when you have something on your mind
    by the way - fabulous username:)
     
  6. Runningman

    Runningman New member

    Jan 17, 2018
    1
    Hi,

    First use of TP. Wife diagnosed with Early onset Alzheimers, around 3 years ago now. Both of us mid sixties and married for 46 years. The fact I am a carer is only just sinking in, perhaps I have been in denial and caring does not come naturally. Everything in our relationship has gradually turned upside down.

    Lots of issues which are becoming more difficult for both of us. Looks like the forum could be helpful to share experience and see how others cope.
     
  7. Mipsydoo

    Mipsydoo Registered User

    Jan 16, 2018
    14
    Female
    thank you for the advice , much appreciated
     
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hi @Runningman
    a warm welcome to TP
    it's quite an adjustment to become your wife's carer as well as her husband, and find sometimes the roles don't seem to mesh together comfortably
    my mantra with my dad is 'expect the unexpected' to remind me that I can never be sure what's around the corner so to be as flexible as possible
    TP is exactly the place to share coping strategies
    so have a mooch around and join in
     
  9. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    242
    Southampton
    Hi, I've used this site before but not for some time. I have had concerns about my husband for several years. We have been seen at the local memory clinic three times. Twice by the same doctor (only twice because I insisted, after the first time she wanted to discharge) and then earlier last year by a specialist nurse following a second referral. I have been very unhappy with the way these appointments were handled in that I was expected to say anything I wanted to in front of him. On the first occasion I had taken copious notes which I was only able to surreptitiously thrust at the doctor as we left. I don't feel my notes or anything I had to say was listened to or understood. The outcome of course was that no diagnosis has been made. However my concerns remain, his difficulties have become worse and I'm left in limbo. He has been told he doesn't have dementia so he doesn't recognise his problems. We have recently changed to a new GP who I have spoken to following a terrific outburst from my husband which left me feeling dreadful. He first offered me help which I declined because I feel it's my husband who needs the help. He has proved a very good listener and now wants to see my husband on his own (I usually attend all appointments with him), my husband has agreed to go. I told him it was to talk about his memory problems, he said he won't go to memory clinic again. Since I made the appointment for him he has been compiling a list of things he wants to speak to the doctor about none of which relate to his memory. I don't know if he's forgotten he's supposed to be going about that or not. Since his outburst I've had to give up a lot of things I was doing eg voluntary work and seeing friends. I'm trying to keep things on an even keel by practising methods I've seen on this site. I just really need the medical profession to see beyond the memory tests and recognise that I live with this and he is worse than they realise. Maybe one day they will before I die of boredom!! Thanks for listening.
     
  10. susanb9370

    susanb9370 New member

    Jan 19, 2018
    2
    My husband was diagnosed with Alzheimer's in October 2016. He has always been quite controlling having been a successful businessman all his working life. However I got to the point that I could not deal with his behaviour and other people were noticing that something was wrong. He did not want to get medical advice and it took my daughter and I a great deal of effort to get him to go for a scan. He still does not accept that he has anything wrong with him and is also incensed that his driving licence has been revoked. He is 77 years old and I am 67. At the moment his aggression is in the form of shouting at me, but he is quite reasonable with other people. Having read some of the other posts, I am now very nervous that he may become violent. I have not had cause to be concerned yet but is this something I should expect and are there any signs to look for??
     
  11. susanb9370

    susanb9370 New member

    Jan 19, 2018
    2
    Hello,
    I'm new to this site so I hope you get this. Although my husband was referred to a memory clinic, he was given a CT scan which revealed the problem in the brain. Can you get your doctors to refer him for a brain scan?
     
  12. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    242
    Southampton
    Hi, thanks for your suggestion. I didn't mention that he did have an MRI brain scan before his first memory clinic appointment. This revealed some mild small vessel disease but he didn't tolerate the scan so they couldn't complete it! I asked at the time if it would have been better if they'd been able to do more but they said it wouldn't make any difference, if that was the case why would they want to do it?! His problems date back to heart surgery in 2010 following which they had problems with his oxygen levels and blood pressure stabilisation. First appointment at memory clinic 2014, second was 2017. My mother has vascular dementia so I know the signs and he gets more like her every day! But what do I know, I'm only his wife, that's how they've made me feel.
     
  13. Thomson

    Thomson New member

    Nov 2, 2017
    4
    Hi have been a member for a few months and I have gained a lot of knowledge and good tips on looking after my father he is in very late stage dementia eating and drinking very little sleeping a lot and probably only 5 stone in weight. I have had excellent support from our doctors and due to age and having tuberculosis twice in the fifties has reoccurring chest infections but I am offered hospital at home care so the nurses come to us do everything they would do in a hospital but he stays safe and contented in our home. The past 18 months have been a huge learning curve for me and I would like to thank all of the members for their invaluable threads
     
  14. Chalkie

    Chalkie New member

    Jan 19, 2018
    8
    Hi - I am halfway through my neuropsychology assessments but it's pretty obvious that I have some form of dementia. I've just found this facility and look forward to giving and receiving support.
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hello @Chalkie
    a warm welcome to TP
    you have found a wonderful site to share your experiences with folk who understand and have much sympathy and knowledge - there's lots of support and advice on offer here
    start your own thread or join in any of the existing discussions - and do pop into the tea room if you fancy a light-hearted chat
     
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hello @Thomson
    good to read that TP has been helping you in what sounds to be a challenging situation
    and I'm glad you have a lot off support in your home
    now you've started, do keep posting - it is helpful to read around the threads - it's also good to have your own posts replied to with supportive responses from other members
    best wishes to you and your father
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hi @susanb9370
    welcome to TP
    I wish there was a simple answer to your question - sadly what you describe will be familiar to many carers here
    this may help
    https://www.alzheimers.org.uk/info/20064/symptoms/92/aggression
    and have you come across this thread on compassionate communication
    https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired
    my dad can get very agitated and as soon as I see this, I back off, apologising even when I've done nothing as it seems to help him to pass the buck (no big deal, just 'oops, sorry that was a bit daft of me ..') - I let him settle in a quiet room with lowish lighting and maybe some quiet music, even spray lavender - then I let him be so he has no stimulation to play off against - definitely no explanations or discussions or arguments, that just fuels his anxiety (and boy did he used to be quick at turning whatever I said against me, however flawed his logic, he was convinced he was right) - I quietly pop in to see how he is, no talking to him, and either back away or then take a coffee and chocolate biscuit, as he loves them and he can't argue with his mouth full so it's a good distraction - then I carry on calmly as though nothing happened - not easy, but doable most of the time
     
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hi @yorkie46
    how very frustrating for you - hopefully this GP will be a more on the ball
    I appreciate that you have already spoken to the GP, but before your husband's appointment send/hand in a letter with a bullet point list of all the changes you've noticed to back-up what you said when you saw the GP and for them to refer to - include all your concerns and the effects on you, so that there is a written record of your husband's behaviour and your worries
    until then, I'd not mention anything to your husband so he doesn't build up any resentment towards you
     
  19. Suzec

    Suzec New member

    Jan 19, 2018
    1
    Hello everyone, I have just signed up today. My 84 year old Mum was diagnosed with vascular dementia about 8 years ago. I remember visiting her at home and finding her crying a lot and talking about her childhood, she had a difficult childhood after her parents divorced. The crying became more and more frequent, and I noticed she was becoming more and more depressed. Until one Christmas 8 yrs ago she took 100 paracetamol, luckily my younger sister was staying with her and heard her being sick in the early hours of the morning. She survived. The doctor at the hospital gave her an MRI after I had described her recent behaviour and found brain atrophy and signs of mini strokes. It has been a long hard road since then. Family feuds, depression, anxiety and many sleepless nights. Grieving while she’s still here, for the loss of someone I’ve taken care off for many years who is now in a home, guilt that she is in that home.
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,205
    Female
    Dundee
    Hello @Suzec and welcome to Talking Point.

    I'm so sorry to read of your situation but I'm glad that you have found this forum. There is always someone around to give a listening ear and a word of encouragement.

    When you're ready you might want to think about starting your own thread in the I Care for A Person With Dementia area of the forum. If you click on that link you'll see the kind of threads posted there. Many people find this a good way to keep responses to questions and concerns in the one place. Of course you don't have to do that! Use the forum in any way that you find helpful.
     
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