Thread Status:
Not open for further replies.

Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Mar 22, 2018.

  1. Mark_W

    Mark_W Volunteer Moderator

    Sep 28, 2015
    4,036
    London
    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. gledhillda

    gledhillda Registered User

    Feb 3, 2013
    2
    HI as advised I am introducing myself. My dear late father had dementia, it was actually Lewi Body dementia which suddenly developed just over a week after falling downstairs (this was confirmed by the brain bank after death). I am trying to find out more about the medical reasons that this happens. I notice in the forum accounts of where other members have seen dementia suddenly occur after injury. For example in 50118 a dear lady of 92 suddenly developed dementia after injury and in the article Nebiroth mentions that it is well known that injury and infections can exacerbate dementia symptoms. I wonder if (s)he or anyone else is aware of any research into this? The doctors assumed that he had it prior to the fall, but there were no signs of that, even at age 84. The change was sudden and frightening. thanks for reading!. david.
     
  3. Trishbennettuk

    Trishbennettuk New member

    Mar 22, 2018
    3
    Hi i am new here . My Mum has not been herself for the past 3 years . she suffered from depression but the past year and a half she has changed so much . her memory is awful she gets so upset . she cant have conversations as she cant keep up or take what we are saying in . she repeads her self so much obsesses over things things that would seem irrational to others she has stopped sleeping of a night . mum is 62 yo ! Its so hard to explain with words but she is becoming a stranger . me and my sister do as much as we can for her but our father is a poorly mam so he seems to stay out the Way of mum as he cant cope . mum had chest pains last week so we took her hospital the nurse and doctors questioned was mum always this forgetful i said yes explained she had brain scan 2 years ago and came back normal mum also had CBT which she couldn't keep up with. anyway hospital did scan doctor said there's some changes but down to age . anyway memory team came out we give them the paper the doctor gave us over brain scan they said it was fine but will take a closer look . they are contacting me tomorrow once they have spoke with gp and mentioned doing a more in debt scan . i have worked in a dementia care home and the way mum is i see there has to be something going on . it isn't right the way she. is i don't believe its her depression she imagines things like people ringing .. For example she was convinced she is attending speech therapy when it was my nephew going to an alot today . we feel like,all the times we have been to GPS we are getting no were at all ! Our worse fear is the memory team dismiss her . they are calling tomorrow so wull hopfully know nire then .. people are noticing mums memory problems more and more she accepts it one day then the next she's being passive aggressive with us all and blaming dad for her being the way she is .. She's also accused dad of doing things he has not and saying things eben though we have been there to witness .. Any advice welcome .. My main question is about scans are they 100%accurate do they pick up all kinds of dementia . mum is changing rapidly .. I just want to get as much help as possible . thank you
     
  4. Tricot

    Tricot Registered User

    Jun 20, 2017
    84
    France
    Hello Trish, I'm so sorry to ready about your mum. It's so worrying and frightening for you. There are very experienced people here who will be able to help and advise you but I just wanted to say, as someone who has undergone testing and scans, that things don't always show up and it can take a long time to be diagnosed. I know how frustrating and upsetting it is that professionals sometimes don't seem able to see what the family see. Make notes for the memory team so they fully understand what's going on. I'm sure they won't dismiss you. Good luck.
     
  5. Katylin

    Katylin New member

    Mar 24, 2018
    1
    Good Morning,

    Recently, I invited a friend with AD (diagnosed 5+ years ago) to move in with me as I had a spare room. Prior to living together and only chatting or visiting infrequently while she lived 7 ours away, her AD seemed to not be too bad, RX had it controlled and prevented deterioration.

    Now I am seeing the truth of her condition and am having some difficulties. She won't eat leftovers over two days old, and tells me she doesn't like dishes she previously said she liked.

    I recently lost my job, went on retirement, but found another job, as I need these funds to keep us housed. I cannot afford the time or money to cook this often and she only wants to eat chicken. If I don't cook she eats very little. She doesn't seem too interested in cooking. She recently expressed anger that she's being told (by others I guess-family perhaps) that she's getting worse. I am noticing story telling and I am now getting confused and feeling like it's becoming contagious-not physically of course-but by the day-to-day dealings while still trying to support myself and my friend. Just needed a place for advice and to educate myself in this disease.
     
  6. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,830
    N Ireland
    Hello Katylin, welcome to TP. You have come to the right place as the members here are a friendly, informative and supportive bunch. If you have any specific questions or just want to vent frustrations don't hesitate to start your own thread as you will certainly get replies. In the meantime do try to have a good look around the site.
    I guess from your saying Good Morning that you are not in the UK. It would help from the point of view of getting advice if you confirmed your location as things may differ somewhat where you live.
     
  7. RedSunset

    RedSunset New member

    Mar 25, 2018
    3
    Male
    Berkshire
    Hi all - I've just signed up and am this point following the guidance from the welcome message! My reason for joining is that my father has mixed Alzheimer's/Vascular Dementia. He was diagnosed with this just over 2 years ago, at the same time my mother was also diagnosed with Alzheimer's. She passed away just over a year ago and, I'm sure like everyone else on here, it's been quite a journey over the last year in particular. Dad is currently in a Nursing home and, whilst I've dealt with the Alzheimer's Society during the journey, I've been meaning to connect into this community for a whole variety of reasons, including sharing of experiences and feelings. So here I am!
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,855
    Female
    South coast
    Hello @RedSunset and welcome to Talking Point.
    It sounds like the past 2 years have been a roller coaster for you.
    Do have a mooch around and feel free to join in any of the conversations or, if you want to ask a specific question, start your own thread in the most relevant section.
    I look forward to seeing you around
     
  9. EdgsonW

    EdgsonW Registered User

    Jan 14, 2018
    85
    Male
    Bath
    Welcome. I am quite a new member and am a carer for my dear wife who was diagnosed about 18 months ago. It is quite a steep learning curve especially as I chose to move nearer the rest of the family and have had trouble selling our house.
    This site is helpful and I found out about sundowning however with daylight saving I am wondering how that will go now that the evenings are lighter??
    Anyway welcome again.
     
  10. MrsK.68

    MrsK.68 New member

    Mar 26, 2018
    1
    Female
    Newcastle upon Tyne
    Hi there
    I have just signed up today as really have no idea which is the best direction going forward to help and support my lovely Mum who has been living with Vascular Dementia since her stroke in December 2015.

    Mum is 77 years of age gone from being the most energetic fun loving non opinionated and least moody person ever always caring for others before herself actively involved in the church and the village life to person who is now no longer able to drive, very unsteady on her feet, always sleeping, some days will get dressed and go out others refuses to move, has become very agitated easily upset and very opinionated. The hardest thing for us as a family is loosing our best friend our ROCK. We have over the last 2 years adapted well we don't put any pressure on her respect her good days and bad days and learnt to bite our bottom lip very firmly on those days when she not so aware of what verbal abuse is coming out :(

    We know our Mum's Dementia was as a result of a stroke which we believe is from her being insulin dependent diabetic and taking other medication for heart issues. Again as a family we have lived with diabetes as Mum (Type 2 Insulin dependent diabetic) followed on her from her Mother and Grandmother. However they both lived until great ages of high 80's but they did not suffer strokes or any dementia issues so they were able to respect their illnesses.

    Last Summer Mum underwent a major operation to remove a mass from her pancreas (again diabetic related) she is recovering well from the surgery however we have noticed that her dementia is getting worse to the point now that she is forgetting to take her daily insulin and confusing her medication often missing dosages or taking it all at once.

    My poor Dad who is 80 this year is now finally admitting that he isn't coping as we fighting a loosing battle with the insulin and medication as Mum very argumentative and volatile if you ask if she has taken her insulin and tablets the more you mention it the more stubborn she becomes.

    Its a cruel cruel illness and really what I would like to know is if any of you guys have a similar situation and if you have any advice would be gratefully appreciated.

    Just want what is best for Mum try to help her to remain as independent as possible and understand we only asking because we care ...
     
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,722
    Yorkshire
    hello @MrsK.68
    a warm welcome to TP
    your poor dad; it can't be easy on him trying to do the best he can for his wife - good on him to be accepting that he alone can't provide all the care she needs
    has your mum had an assessment of her care needs by the Local Authority Adult Services as she has a right to this - and your dad has a right to a carer's assessment - from this a care package should be suggested, hopefully some home care visits to help with personal care and taking meds (she may be more accepting of eg a nurse helping her), and eg a sitter, some day care and respite, plus an OT visit to their home to look into any aids adaptations that may help
    any financial assessment to pay the care fees will be on your mum's income/savings only (the marital home is disregarded so reassure your dad that there is no question that he will have to sell to pay for care fees, or that he is responsible for paying for his wife) - also let him know that Social Services' policy to to support people to stay in their own home as long as possible, so it's unlikely that they will immediately suggest a move to a care home
    do also look into Attendance Allowance and then a disregard of your mum's Council Tax (so your dad will pay at the single occupier's rate)
    do have a chat with your mum's GP so that they are fully aware of her current behaviour - they can refer to Adult Services - and some meds may help with your mum's aggressive responses
    make sure LPAs are in place for both your parents, so that someone has the legal authority to manage their affairs 'just in case'
     
  12. Minky4

    Minky4 New member

    Mar 27, 2018
    6
    Hello.
    My partner has recently been diagnosed with PPA. He is 69 and over 20 years older than me.
    I am a bit lost and generally panicky and don’t know where to turn or what to do for the best at the moment. I work full time still. I have to as we are not married and I am still a long way off being able to retire and I fear the financial consequences of any long term care (I understand that the LA can sell the house we have lived in for 20years, but he owns, from under me potentially leaving me homeless).
    So, he’s on his own most of the day. I know I need to change this but even before his PPA he was an awkward so-and-so, he walks a lot and hates being cooped up so have to find the right option for him.
    It’s also broken my heart to watch a fiercely intelligent man become someone who can’t express himself or read books he loved and become more and more dependent on someone as useless as me.
    Anyway. I don’t expect anyone here to be able to solve my problems but it’ll just be nice to talk.
    Thanks
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,707
    Male
    Bristol
    Welcome to TP Minky4. I can relate to the horrible possibility of homelessness as my partner is the sole tenant of supported housing, not sure where you stand in your case and would advise speaking to Citizens Advice or the Dementia helpline if nobody on here can advise. That slow decay of intelligence and eloquence is hard to handle too.
    Please do continue posting on the " I have a partner with dementia" forum any time you need advice or just to vent.
     
  14. Mickysmum

    Mickysmum New member

    Mar 27, 2018
    1
    Hi, I have just signed up because today is just 'one of those days!'
    My mam has Alzheimer's, diagnosed last year although had been refusing to see anyone about her memory for some time. After reading other threads, I realise it is mild at minute.....but some days it just hits you!
    Mum was diagnosed last year a couple months before my dad died of cancer. He lost cognitive thoughts and ability at the end. I have an older brother who lives with mum but has some social awkwardness.....and doesn't tend to think much for himself....we had several rows before he got to grips with how I'll my dad was. I am a single mum to a 9 year old boy, and I work full time.....sometimes I feel pulled in all directions, no-one has enough attention, the plates do not always spin and I am dragged down by the realisation that it will only get worse
     
  15. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,707
    Male
    Bristol
    Welcome to TP Mickysmum. You have a lot on your plate with your mum and your brother. Have you spoken to social services about a care plan to make sure your mum has some care at home from professional carers? That should take some of the pressure off you and your brother. Ask for a care needs assessment, for which she is legally entitled, so that you are all aware of what is available and they are aware of what is needed. I would also think about Power of Attorney to help you deal with your mum's affairs in the future. ask AgeUK for advice on the forms, they helped us a great deal.
    Best wishes,
    Rob
     
  16. Moshi

    Moshi New member

    Mar 28, 2018
    4
    I am a carer for my husband who has Alzheimer’s. Diagnosed 5 years ago although as a family we do know in retrospect it started at least 7 years before that. I am extremely fortunate in that I have a lot of support from family, and he still likes to go out and about a lot. This does cause problems as he likes to talk to everyone, and join in with strangers conversations, always with the same few words, again and again. We are also lucky that we live in a small town where he is known so most locals understand and are supportive.
    Everyone tells me I am a fantastic carer, but they haven’t seen me when I am so frustrated with saying the same thing again and again, that is when you feel guilty, but I try and tell myself I am not alone and other carers are in a far worse position.
    Last year I started a support group after going on a course about dementia,we meet monthly for coffee and some people also bring the person they are caring for. That is a great help as you realise you are not alone.
    After being on a plateau for about a year we have just had a big dip and memory etc is now extremely bad.
    I look forward to joining in on some of the forums.
     
  17. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,830
    N Ireland
    Hello @Moshi, welcome to TP, you will find this a friendly, informative and supportive place.
    It sounds as if you will be able to bring a strong contribution to the forum and I hope you find it a useful place.
     
  18. ianrut

    ianrut Registered User

    Jun 9, 2017
    11
    Male
    tunbridge wells
    Hello My name is Ian I am 81 and have been happily married for 58 years.My wife Mary developed dementia 3 years ago and I cared for her as things got steadily worse. eventually I could not cope with the stress of 24 / 7 and Mary is now in a Nursing home.
    My life has now completely changed from a full time carer to a lonely old man in an empty house full of memories.
    I visit Mary every day and she still smiles but she is no longer in my world.
    I am told by friends to try to move on to my new life but I cannot just abandon her after 60 happy years.
    I am sure there are many brave people out there . How do you manage in this situation?
     
  19. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,830
    N Ireland
    Hello @ianrut, I don't have personal experience of your position but am aware of someone in exactly your position - my next door neighbour.
    I know that my neighbour visits his wife every day and has done for 3-4 years now. He also keeps himself busy with whatever he is good at - in his case he is a retired bookkeeper and he now works part time for a local charity and also his son, keeping the books - even though he is 93.
    Loneliness is a problem so is it possible that you could attend something like a Memory Café in your area or have a person to person chat with someone to get a few pointers. The AS help line details are
    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.

    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    That helpline will close tonight at 5pm for the Easter break so other help lines that may be available and of use are

    The Samaritans: Open 24/7 on 116 123 (UK) or 116 123 (ROI)
    Saneline: Open 4.30pm to 10.30pm on 0300 304 7000
    Age UK: Open 8am-7pm on 0800 055 6112

    Of course, TP is always available and as we have members in many parts of the world there is usually someone around to answer a thread if you start one at any time of the day/night. Even if you just want an on-line chat do start a thread or join in some of the others as we do have a few threads that are used for this purpose. We are all here for you as we are all on the same dementia journey together.
     
  20. Liz Williams

    Liz Williams New member

    Nov 22, 2017
    1
    Hello my name is Liz and I have had Alzheimer's since 2014 and was diagnosed with motor nurion in 2015 I live near Caerphilly
     
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.