Thread Status:
Not open for further replies.

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

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Mar 22, 2019.

  1. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    4,036
    London
    Welcome to 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 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.

    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

    post a thread smaller screen.png

    reply to thread smaller screen.png


    2. To start a discussion, type a title, add your message and choose 'Create Thread'.

    create thread smaller screen.png

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

    reply screen smaller screen.png
    ---

    Any questions?

    If you have any questions about using 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 Talking Point to help you?

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

    Mark :)
     
  2. Liz33

    Liz33 New member

    Jan 5, 2019
    1
    Hello
    My mother is 97 and has dementia for atleast 7 years maybe longer ?She lives in her own home .She is also partially sighted.I am her daughter and her main carer.I have two brothers .Mum gave me the Lasting power of attorney after my father died 25 years ago saying she would like to remain in the family home as long as she could manage but then would go into a care home as long as I found a good one.
    Both my brothers are very anti care homes for various reasons though I suspect the main reason is the cost?
    I have and manage 3 private carers doing 4 visits a day.I visit practically every day for 2 or 3 hours and do her shopping ,manage her money.
    My brothers do help with hospital visits .
    My mother said a couple of years ago " what do those boys do "I think I will change my will if you take me to the solicitor .I said no but told them in the hope they would see her more frequently.Naughty of me but I felt they could do more .The older one still works for himself and the younger one too though not so much since he has been ill.
    They have especially the younger one who now often stays with her at weekends as he doesn't live close enough to pop in.I do worry when she is lonely if she has enough care .
    For 97 she is still amazing and goes upstairs though frequently says "is this my home ?Where do I sleep?
    She also has trouble with continence and while I cope with her asking me the same questions find helping her to cleanherself up after she hasn't made it to the toilet quite distressing though I'm getting use to that too.
    My question is will I know when she would be better off in a care home or is she better in her own home ?
    I do have reliable carers but sometimes feel annoyed that they sometimes claim for more time than they do though my brothers always say "Dont upset the carers"I expect a lot for her .
    My older brother thinks she wouldn't get so much individual attention in a care home and maybe he is right.
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
    Hello @Liz33, 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 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, when is the right time for residential care etc., if any of that hasn't already been done.

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

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    Welcome to TP from me too @Liz33. You will get support from others who have made the decision to put a partner or parent into a care home. I'm only at the stage of thinking about the cost and the guilt. It's good to read your brothers are getting more involved though.
    As for carers, we have changed agency a couple of times and I have reached the stage where I don't mind if they don't necessarily stay for the full time so long as my partner is happy, warm and clean when they leave.
     
  5. ScaredyCat

    ScaredyCat New member

    Mar 31, 2019
    4
    Hi, my mother was diagnosed with Alzheimers disease on Friday. I knew this would be the diagnosis and am exactly aware of worse case scenario outcome, should she not die before end stage alzheimers. This is because my grandmother and grandfather had it.
    My mother is still quite with it but I am still in shock and denial and alternate between crying because I am heart broken, crying because of how sad my mum must be and crying because U don't know how I'll be able to cope.
    Anyway, just saying :(
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,809
    Female
    South coast
    Hello @ScaredyCat and welcome to Talking Point.

    It is always overwhelming to be told the diagnosis, even when you are expecting it. You will get lots of support here because we all know what it is like. Have a mooch around and feel free to join in or start your own thread if you want to talk about or ask something specific.
     
  7. Captain Dinosaur

    Captain Dinosaur New member

    Mar 31, 2019
    3
    Hey everyone.

    I'm 34 and have recently started struggling with my memory.
    That is pretty much it...

    -Waves-
     
  8. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,470
    leicester
    Hello @Captain Dinosaur and welcome to the forum
    I would Suggest that your first point of call is your GP, there can be many reasons to be struggling with your memory and sometimes a blood test can pinpoint the problem quite easily.
    I hope that helps as I understand how worried you are.
    Now you have found us I hope you will continue to post for support
     
  9. Captain Dinosaur

    Captain Dinosaur New member

    Mar 31, 2019
    3
    Already had a blood test and came back clear. Just waiting to speak to a specialist to see if it's linked to my sleep disorder.
    I swear my dog is hoping I'll forget whether I've fed him or not as he hovers around his bowl more now lol
     
  10. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,470
    leicester
    @Captain Dinosaur I’m pleased that you are being proactive to finding the underlying cause of your memory issues, I hope you get some positive feedback soon
     
  11. linglitterbug

    linglitterbug New member

    Mar 25, 2019
    1
    Hi, my name is Linda, usually called Lin. I went to the doctors last week, and thought I was going about my knees. She started talking about Alzheimer’s/dementia, and then told me I have it. Shock isn’t the word! Can only assume my daughters had talked to her beforehand. I knew absolutely nothing about this, and it had not been mentioned to me. I am waiting for an appointment with the Memory Clinic, whatever that is. Just want to curl up and die! I’m worried, confused and frightened.
     
  12. ScaredyCat

    ScaredyCat New member

    Mar 31, 2019
    4
     
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    hello @linglitterbug
    a warm welcome to TP
    I'm sorry you've come to us confused and frightened but really glad that you have found this wonderfully supportive community so you know there are folk here to talk with
    I guess your daughters may have been worried about your health and asked your GP to give you a check up
    I'm not sure how your GP has made the diagnosis, so it will be helpful for you to attend the memory clinic and have a chat with the consultant there
    maybe as things pop into your head, write out some notes of anything you would like to ask so you have a prompt when you go to the appointment
    I hope you have someone who can go with you for support

    do post here with anything that's on your mind as members are very helpful

    maybe start your own thread when you are ready, here possibly
    https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
     
  14. nitram

    nitram Registered User

    Apr 6, 2011
    19,277
    Male
    North Manchester
    @linglitterbug

    As has been said it looks as if your daughters have been proactive in talking to your GP.
    Well done to them and also well done to you in accepting the diagnosis, denial often leads to problems.

    'Memory clinic' essentially is 'referral to a dementia specialist' in
    https://www.nhs.uk/conditions/dementia/diagnosis/


    Again, to keep all queries and answers in one place you could start your personal thread on https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/
     
  15. Scrimjay

    Scrimjay New member

    Mar 31, 2019
    5
    Female
    Hi, Just joined the other day. My husband was diagnosed with dementia just over a year ago. It's quite difficult to understand the condition as sometimes he seems to be aware of what's going on that day, then other times he can't remember a conversation 5 minutes ago!

    He also has osteoporosis, so is struggling a bit to walk very far. I got him an exercise bike, which he enjoys, but I find it very hard that he mostly refuses to go out of the house. He says things like "I'll go out when I'm better" or "I don't want to give them (referring to a friend) what I've got". Our daughter & I have tried to take him out for coffee or something & he says "you two go out & enjoy yourselves, I don't want to hold you up". I think its partly that he doesn't want people to see him, but I wish there was a way of persuading him to go out as I'm sure it would strengthen his back (and on the odd occasion when we've got him out, he's enjoyed himself)!!

    If I leave him for an hour or two, he just sits watching his favourite tv programmes, that is, until he hits the wrong button on the remote, then can't work out how to get back to that programme, which is very frustrating for him.
     
  16. karaokePete

    karaokePete Registered User

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

    People with dementia will cling to the familiar for security and a general anxiety, that often accompanies dementia, may be producing the behaviour you are seeing. My wife is treated for depression and anxiety as well as her dementia.

    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 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.

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

    karaokePete Registered User

    Jul 23, 2017
    5,022
    N Ireland
  18. Scrimjay

    Scrimjay New member

    Mar 31, 2019
    5
    Female
    Many thanks, i'll have a look. He is taking an anti depressant, which has helped a bit. He used to be so active, always wanting to go off walking, cycling and away for short breaks etc with me, so this completely different attittude (for want of a better word) is very hard to come to terms with, for both of us.
     
  19. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,895
    Kent
    Hello @Scrimjay

    My husband also had osteoporosis and also said `you go by yourself` and like you I`m sure it was a bit of self protection and hesitation because he had lost confidence.

    The difference is my husband would go for walks by himself. I`m sure it was so he could keep his head down , concentrate on his walking and make sure he wouldn`t have to socialise.

    Is your husband capable of going out alone? Would he be safe? If so, could you persuade him just to have a walk round the block just to strengthen his back.
     
  20. Nims22

    Nims22 New member

    Apr 4, 2019
    2
    Hi. I am looking after my mum who lives independently up the road from me. At the mo she is capable of looking after herself and feeding herself. She can no longer look after her flat and has memory for about 1minute. She has refused to go in the scanner as she is scared to go in it so remains undiagnosed. I have recently put her on an automated pill dispenser as she overdosed on blister packs a few times. I get daily phonecalls that she has run out of tablets/ the machine is broken.. She managed to break into it one day and took 5days worth of antipsychotics for her schizophrenia. I am struggling with the paranioa, the fact that she is well but not well enough to cope but not ill enough to get external help bar dementia nurse. I feel so guilty that I am not supporting her enough... Or my young kids. Even my dog gives me a hard time. I have nursed people who have died of dementia, I know what is coming. Thankyou for listening.
     
Thread Status:
Not open for further replies.

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.