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Welcome to Dementia Talking Point! Find out more and say hello.

Discussion in 'Welcome and how to use Dementia Talking Point' started by SophieD, Nov 18, 2019.

  1. SophieD

    SophieD Administrator
    Staff Member

    Mar 21, 2018
    1,611
    London
    Welcome to Dementia Talking Point :)

    If you have dementia, or care for someone who does, you're very welcome to join our community and get support from others. Find out more about how to join and say hi to our friendly community on this discussion!

    Finding out more

    If you've got questions about how to use Dementia 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 Dementia Talking Point.
    • We also have a Quick Guide explaining how to use Dementia 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.

    Connecting with others

    Head over to our list of forums to find people who are in a similar situation, people at a similar stage of dementia or an information topic that interests you.

    Here are some tips on how to post a reply or start your own discussion...

    1. When you're in a forum, look for the blue "Post New Thread" or "Reply" buttons at the top or bottom of discussions
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    2. To start a discussion, type a title, add your message and choose 'Create Thread'.


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    3. To add a reply just add your message and choose "Reply"

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    Any questions?

    If you have any questions about using Dementia Talking Point, you can email us on talkingpoint@alzheimers.org.uk or Use our Contact Form - we're here to help.

    Saying hello

    This is our welcome thread - the place many members start. Our volunteer hosts and regular members are here to say hello to you and to welcome you to our community.

    Why not tell us a little about your experience and how you'd like Dementia Talking Point to help you?

    Whatever you're facing today, we hope you find our community to be helpful and supportive.

    Sophie :)
     
  2. BubblesF

    BubblesF New member

    Nov 24, 2019
    1
    Hi
    We recently moved into a new house with my father in law who has a mixed dementia. So far it’s been a bit stressful, we knew that moving him in with us as opposed to him living on his own would create as many problems as it would solve. He was drinking quite heavily until the summer, so has never really been properly assessed but saw a psychiatrist (I think) about 2 years ago who gave the mixed dementia diagnosis. I don’t really know what I want to achieve from the forum here, just hoping it will help us understand what is going on, how others are coping and give us some coping strategies
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    70,152
    Kent
  4. P0werPlut0

    P0werPlut0 New member

    Nov 28, 2019
    1
    Female
    London
    Good afternoon. My Mum has just been diagnosed which is a relief, so we can support her and utilise all the wonderful resources available. Therefore my only question is however helpful I can be as the eldest daughter who lives 4 hours away and only visits sporadically, but rings weekly. Are my infrequent visits positive or negative? Are my telephone calls helpful or problematic. One borther lives with Mum and the other is very close by. I would like some concrete answers before speaking to my siblings so I am well informed and can minimise problems/assess the risk. I do find our weekly telephone calls a bit difficult and would also appreciate any guidance about these too, as helpful or not. Any help gratefully received.
     
  5. Birdseed

    Birdseed Registered User

    Nov 28, 2019
    16
    Hello. Talking point was recommended by a visitor from The Alzheimer's Sciety. She spoke to our group on its last day of a 7 week course (1 half day per week) about dementia for Carers. Her talk and the course have been very helpful with lots of info and handouts. I will probably often be on here to find help from those in similar situations, maybe offer help if I can. I care for my husband who has dementia. His brother also has it, as did my father. Getting on with it, trying hard:I just wish I had more patience......... We get out and do as much as possible, and my husband now goes to a day centre 1 day a week, which helps.
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    60,154
    Female
    Dundee
    Hi @Birdseed and welcome to the forum. I’m glad you followed up the recommendation and I’m sure you’ll find lots of help and support here.

    Looking forward to ‘seeing’ you around.
     
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    60,154
    Female
    Dundee
    Hi there and welcome to the forum.

    I’m sorry to hear about your mum’s diagnosis. You will find lots of help and support here. I know that there are many members of the forum who, like you, live a distance from their loved one. I’m sure people will share their experiences with you.

    I’ve not been in this situation myself but I think it might be best to have a conversation with your siblings now so that they can tell you how your mum is following your calls or visits.
     
  8. jmg156

    jmg156 New member

    Nov 28, 2019
    7
    Male
    Hi everyone

    I've been reading the forum for a while but decided to join today

    I live with my dad who's 83 and was diagnosed with dementia in 2011. However since then he's not really declined apart from a slight loss of memory (which he acknowledges) so I'm thinking it's possible he may have been misdiagnosed. I think that because he's still extremely independent and he's still of very sound mind

    My dad's recently been in hospital with a chest infection and had a bad episode of delirium but he's now mostly back to his usual self. However today a GP came to the house and confirmed he still has a chest infection which explains why he's quite lethargic and not eating that much. He's sound mentally but so far he's not really improved since getting home from hospital so I may ask 111 for some more advice tomorrow if he's still the same

    Sadly however whilst my dad seems alright my granddad (my mum's dad) wasn't. He passed away from Alzheimer's in 2012 at the age of 74 after declining very quickly once he got to the latter stages

    All the best
     
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    60,154
    Female
    Dundee
    Hello @jmg156 and welcome to the forum. I’m glad you decided to join today. Now that you’ve introduced yourself I’ll look forward to seeing you around the forum.
     
  10. trying too hard!

    trying too hard! New member

    Aug 28, 2019
    5
    Ok I am not sure if I already introduced myself, months ago, or not. Since I joined things had changed, but now, Dad has died. He was carer for Mum, who has reasonably advanced dementia.
    As Dad was well into the 90s, caring for Mum 24/7 was too much for him now, and we had Mum in daycare 5 days a week. Privately funded so she was there from 10 til 6 Monday to Friday.

    Then, Sunday a week ago, Dad went, reasonably well, but with a catheter emergency, into hospital, via A and E. Unexpectedly and sadly we lost him a week later, still in hospital despite everyone's efforts to get him home.
    As things panned out, we got Mum into emergency respite on the Friday, and on Monday they confirmed she may stay. It is at the same place as daycare, so familiar surroundings and staff, and they do understand the troubles I have financially as the EPA registration has not come through!
    They have said it is OK, they will care for her and trust us to pay up!

    We told her on Monday afternoon, that Dad had passed, and she had a small lip wobble, and said, 'oh I am sorry. That is sad' and that is the end of it.
    Luckily, the care home is right over the road from me, I can just drop in at the end of my work day for 5-10 minutes, and see her, and now I can start to plan for occasional weekends away if I want, having not been able to since I do not know when.

    Several people have commented that this will be better and the stress I have lived with being there for them every evening for I do not know how long will be relieved. I wish it had not been relieved. I want my Dad back. even with the stress.
     
  11. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    575
    Female
    South East
    Hi @trying too hard! , I am sorry to hear about your dad , sending condolences . People just don’t understand how encompassing caring is. I’m sure they were trying to point out the positives but after the so very recent loss it hurts .it’s been 8 months since I lost my dad at 72 years old and people so oh that’s young nowadays , yes it is but doesn’t change the fact. It hurts badly but it does get easier to manage in time . It’s good you are close to Mum and can pop in and see her and that she is settled. Take care of yourself . Hope the EPA comes through soon.
     
  12. ebas

    ebas Registered User

    Aug 8, 2019
    71
    This ebas I think I have started a conversation with Vitesse instead of a new thread Occasional outbursts of aggression
     
  13. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    60,154
    Female
    Dundee
    Hi. I think it would be best if you start a new thread. I’ve messaged you.
     
  14. Kingsbridge

    Kingsbridge Registered User

    Dec 8, 2019
    33
    My mum has just gone into a care home and I'm feeling overwhelmed and sad
     
  15. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,523
    leicester
    Hello @Kingsbridge and welcome to DTP
    I think it is a very common emotion when it comes to that decision no one makes it without a lot of heartache
    I hope now you have found the forum you will continue to post for support it is a very supportive and friendly forum
     
  16. andreasss86

    andreasss86 Registered User

    Dec 10, 2019
    13
    Hi everyone. My name is Andrea and I've joined the group to get advice and to offer some of the advice that I've gained so far. My grandma has dementia. Me and my parents have been her caregivers for almost 3 years. A few months ago we've decided to get a private carer for her, as it was getting too much to handle. I'm not as involved as I used to be, as I've recently progressed higher in my career.
    But I really just want to help my parents with whatever advice I can find. This feels like a really nice community and a place to learn from.
     
  17. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,523
    leicester
    Hello @andreasss86 and welcome to DTP
    I’m glad you are finding the forum helpful I hope now you have found us you will continue to post
     
  18. andreasss86

    andreasss86 Registered User

    Dec 10, 2019
    13
    Thank you so much!
     
  19. Caringfromdistance

    Caringfromdistance New member

    Dec 19, 2019
    5
    Hello there!

    My mum was diagnosed with dementia a couple of years ago. Unfortunately both me and my brother live a long way away, so can’t help day-to-day.

    We have had a live-in carer with mum since January this year (through an agency). As I’m not working at the moment, I try to spend around 10-14 days every two months with mum and now the carer. (It’s a 9 hour drive from my home to mum’s.) I basically do troubleshooting, purchasing of equipment that is needed, liaising with doctors, dementia nurses, etc whilst I’m here. I guess feeling guilty is part of the territory - if I was here with mum more, I think my marriage would suffer. Hubby is brilliant, but saying that I can “live” more with mum is one thing, being apart for extended periods of time is another.

    Mum’s standard repetition loop used to be 10 times a day (classic being “I’ve had a stroke”). We are now lucky if it’s no more than 10 times an hour.

    How do you all cope?!
     
  20. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,238
    Male
    Bristol
    Welcome to the forum @Caringfromdistance. Sorry, I've never had the problem of juggling family life and looking after a parent, but that is hard to do. As for the repetition, that is part of the new normal. There is some good advice on communication and distraction at https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/ which may help you.
    I see you have started another thread and hope you find some answers there from our knowledgeable members. Good luck and keep in touch.
     
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