1. Q&A: Medication - Thurs 22nd November, 3-4pm

    Do you have questions about medication and drug treatments for dementia? There's no drug to cure dementia yet, but it's often possible to relieve some symptoms.

    Our next expert Q&A will be hosted by Simon from our Knowledge Services team. He will be answering your questions on Thursday 22nd November from 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! Find out more and say hello...

Discussion in 'Welcome and how to use Talking Point' started by SerenaS, Oct 29, 2018.

  1. SerenaS

    SerenaS Administrator
    Staff Member

    Apr 7, 2011
    13,012
    London
    #1 SerenaS, Oct 29, 2018
    Last edited: Oct 29, 2018
    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.

    Serena :)
     
  2. Run61

    Run61 New member

    Aug 24, 2018
    2
    Hello. I care for my dad who has Dementia. My dad is currently in hospital with an infection, he has now been in hospital for 4 weeks. At the beginning of this week myself and my brother were told Dad was ready to come home, but that he needed to have a bed downstairs. We have re-arranged our living room, so it is now Dad's living/bedroom. The hospital bed has arrived and its in nicely. We visited dad last night and he seemed very confused again, I have asked that he is tested Just in case the infection has come back. I cannot have him home if he still has the infection.
    Whilst he is in hospital I have found it very difficult to communicate with him.
    His speech has gone due to the Dementia and I am not sure how I should talk to him. I am finding it very hard watching my dad disappear.
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    67,087
    Kent
    Hello @Run61. Welcome to Talking Point. I hope you get the support and answers you need.

    Communication when hospital visiting is difficult at the best of times. If your dad still has an infection it will have a much more detrimental effect on his dementia than it would if he was dementia free.

    All you can do really is wait until the infection is cleared and you get him home into a much more comfortable environment.

    I'm full of admiration for the preparations you have made for him and hope it all works out well for you and your dad.

    Now you have introduced yourself, it may help to start your own Thread In the sub forum I care for a person with dementia

    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

    This way all the replies you receive will be together and easier for you to access them.

    If you click on Watch Thread you will get an alert each time you get a reply.
     
  4. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Hello @Run61, welcome from me too. I hope you find the forum to be a friendly and supportive place.

    You mention that you find communication a problem. There is a useful thread about communication and also a Society Factsheet about all types of communication, such as non-verbal communication etc. In the hope that the contents of these will assist you I have included links for them below. With the link for the Factsheet, just click the PDF link for an easier read.

    Communicating (500)
    PDF printable version

    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

    Now that you have found us please keep posting as the members here have vast collective knowledge and experience and are very willing to give their support.
     
  5. Michelle48

    Michelle48 New member

    Nov 6, 2018
    1
    Hi my name's Michelle my parents are both affected by dementia. Dad has vascular and due to pneumonia is in a nursing home in CHC. Mum is at home. Just a question the stopped dad's AA and pension credit, and the benefit agency said mums has to claim pension credit as a single person is this correct very confused!!!
     
  6. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Hello @Michelle48, welcome to the forum.

    It appears that AA stops after 28 days in a home, unless you are self funding.

    Having said that, I know little about the system but I’m sure others will be along later to advise. I don’t know if it’s any use to you but if you click the following link it will take you to the Society’s Factsheet about benefits

    https://www.alzheimers.org.uk/media/1041
     
  7. Mojito

    Mojito New member

    Nov 7, 2018
    2
    Hello to all,

    We have recently just been given a diagnosis for my mum of early onset Alzheimer's. She is 72 years old and has been managing less and less well for the past 2 years at least.

    From reading some of the other posts, I think both my sister and I thought that Mum was just becoming 'a bit scatty' in her older years but now unfortunately we can see it is more than that.

    It makes me very sad that we didn't spot it sooner as I feel maybe more could have been done with preventative medicine etc but then I now understand that there isn't very much that helps in that area.

    We have had to recently take the car away from Mum as she went out for a drive and ended up in Gosport which is 25 miles away from her home! She knocked on some doors in the area and very luckily and kindly couple were going to visit their daughter in Emsworth which is near to Mum. It made me feel very happy about the kindness of strangers!

    The problem we have now is that my sister and I work long hours and Mum lives in quite an isolated area with no bus routes or shops nearby. We both see her at least once a week and are in touch every day. She has a cleaner who doubles as a companion and takes here shopping on a Monday.

    I would like to find out about other services or aid that maybe able to give Mum some company once a week so that she can have help with walking her dog or maybe doing some Art/Choral singing which she used to do a lot.

    This is all very new to me and I really have no idea who might be best and what might be available.

    Thanks so much for reading
     
  8. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Hello @Mojito, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    Do 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 I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  9. Mojito

    Mojito New member

    Nov 7, 2018
    2
    Thanks so much for your kind words of support and advice @karaokePete . I will certainly start looking at those links you have sent and start discussing these options with my sister. We both feel very lucky at the moment because my mum always so positive and even though she knows she has memory issues, she just 'muddles through' in her own words!

    Just reading some of the other threads has made me very sad as there are so many people out there who are in a much worse position. My heart goes out to them and I hope we can help in any way.

    Kind regards
     
  10. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    TP is a great place for mutual support from people travelling the same bumpy road so I hope to see you around. Never be afraid to make observations if you want to join a thread, or start a new thread if you want to ask a question or just vent feelings.:)
     
  11. Matlot2020

    Matlot2020 New member

    Nov 8, 2018
    2
    Hello all

    My Mum has early stages of dementia. Her memory is going, she can no longer cook, and increasingly finding it hard to write, and is baffled by tasks such as writing a cheque, etc. She's living with my Dad who is mentally well, but is in the end stages of Leukemia, so is unlikely to be alive for more than a few months. He is getting increasingly tired chasing up a diagnosis for my Mum and is worried for her.

    We're really struggling to get a proper diagnosis, assessment and treatment/intervention plan, despite having her first memory test at the GPs in early June. She had a CT scan in September but the local memory service have said she won't be able to have her follow up tests until sometime after Christmas. If we're lucky, and she gets the tests in early January 2019, that will be more than half a year before she can get a diagnosis and treatment/care plan.

    I'd really appreciate it if anyone has any experience of dementia diagnosis and assessment in East Sussex (specifically in the High Weald Lewes and Haven CCG area). What do I need to do / Who do I need to speak to get my Mum seen? What is the local care pathway? And what is a reasonable amount of time for her to get a proper diagnosis and treatment and/or care plan?

    Thanks very much for reading this.
     
  12. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Hello @Matlot2020, welcome to the forum.

    I can’t speak for the area where your parents are located but in my home area, N Ireland, it took more than a year to get a diagnosis for my wife.

    I think resources may be stretched across all areas of the UK as many new members mention the long delays in getting a diagnosis.
     
  13. Teech

    Teech New member

    Nov 8, 2018
    1
    Hi. My Dad has just returned home after 6 months in hospital and then a care home following a fall which resulted in a broken hip. Prior to this we had visited the GP due to his memory difficulties. Further
    tests were done during his hospital stay and Dad now has a diagnosis of mixed dementia. It's been an emotional roller coaster over the past 6 months and we have had to fight all the way to get Dad home where he was desperate to be. He's been home just over a week. The care package is working really well but Dad's behaviour has changed. Prior to coming home he kept ringing Mum up, asking who she had at home and suggesting she was having an affair. We thought he would be reassured when he was home with mum but it seems to be getting worse. He has started to go into Mum's bedroom in the middle if the night, waking her and accusing her of having an affair. This is obviously impacting on Mum's well being. We want it to work but need mum to feel safe . Should we discuss with the GP or has anyone got any hints and tips on how to address thiso or who to turn to for help?
     
  14. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Hello @Teech, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    Do 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.

    The problem that you are now experiencing seems common enough as I have seen it mentioned a few times. I think your own idea of consulting the GP is sound as issues like anxiety, depression and paranoia are common in dementia and medication can help. My own wife is medicated for these things as well as her Alzheimer's.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  15. Matlot2020

    Matlot2020 New member

    Nov 8, 2018
    2
    Hi @karokePete, thanks for your reply. It seems depressingly common that services for dementia are under resourced, although a year sounds very unreasonable. I'm sorry that you had to wait so long.

    Over the past couple of days I've been calling around various services in the East Sussex area, including the service provider, individual services and the clinical commissioning group. I have been very disappointed at the lack of information / signposting from Sussex Partnership NHS Foundation Trust - they have been opaque and disorganised. However I've been pleasantly surprised about the response from the CCG. I shall now wait to see if they are able to move things along any faster.
     
  16. KJE

    KJE New member

    Saturday
    3
    Hi everyone,

    I've joined this forum as I am a carer looking after a lady with Alzheimers. While the information online through Alzheimers.org is amazing, I just felt that sometimes it is nice to be able to ask a specific question, and get responses from people in similar circumstances. Looking at the threads here, and the way everyone supports one another, I know this is going to be an invaluable resource.
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    6,537
    Yorkshire
    hello @KJE
    a warm welcome to TP
    you are absolutely right, there's nothing like the support and helpful suggestions offered by members here
    so settle in, have a mooch around and start a thread of your own when you are ready
     
  18. Puzzleman

    Puzzleman New member

    Saturday
    1
    Thank you for your welcome I'm new to this as you will know my wife has just been diagnosed with Alzheimers after having all sorts test latest being a pet scan which showed why her memory has got worse a long with other symptonsshe as stage 4 so yea its not sunk in yet so not sure how we should acting
     
  19. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    4,832
    Male
    Bristol
    Hullo and welcome to TP, @Puzzleman.
    I'm sorry your wife's diagnosis has brought you to us, and know it does take a wee while to sink in. You probably have information leaflets coming out of your ears, but I'll post a link to the Society factsheets in case it helps https://www.alzheimers.org.uk/about-dementia/types-dementia/alzheimers-disease.
    Take your time t browse a few threads and settle in, but you may want to find memory cafes in your area and you may want to see if your wife will give you power of attorney for which Age UK were helpful in our case. Best wishes and I'll hopefully see you on the forum.
     
  20. karaokePete

    karaokePete Volunteer Host

    Jul 23, 2017
    3,260
    Male
    Cyprus
    Welcome to the forum from me too @Puzzleman.

    Just to add to all the info being passed to you, here's a link to a part of the forum where you can do a post code check for support services in your area https://www.alzheimers.org.uk/find-support-near-you

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

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