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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, Oct 18, 2019.

  1. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @xPollyx, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    Unfortunately what you describe is all too common. Try to make your GP your best friend and get Social Services involved for Needs Assessments, 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. There is also a Dementia Guide in the list.

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

    Cristal New member

    Oct 27, 2019
    1
    Thank you I am trying to sort out what I do, then I can write in . I will look through. Cristal x
     
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,305
    Merseyside
    Welcome to DTP @Cristal.
    You’ve come to a supportive & helpful place.
     
  4. xPollyx

    xPollyx New member

    Oct 23, 2019
    3
    Thank you so much for having me it's somewhat a relief to have this forum to be able to learn about this horrible illness and have some support
     
  5. Chrissie2U

    Chrissie2U New member

    Nov 3, 2019
    3
    Hi, my lovely mum became ill in 2016. She was very independent, drove her car, went out a lot, knitted, read, did crosswords etc, she was my rock! In July 2016 it all changed and she was diagnosed with Alzeimers early 2017. I never knew it would be so difficult, i have had to fight to get the care and financial support all the way! You feel very alone. I had to fight to get disability living allowance, fight the council to get carer's. When mum has been in hospital, they way she was treated was awful. I told them she needs to be reminded to put pads on especially at night and every day i would go in to find clothes sodden because the hadnt reminded her. I have had a visit from the dementia reablement team ONCE only! I also work and have childten to look after. It has been such a hard journey but i am now delighted to have found this forum as i have felt very alone going through this. X
     
  6. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,019
    Male
    Bristol
    Welcome to DTP @Chrissie2U. We can all relate to the struggles and loneliness that come with caring, but you will find help, advice and support here.
     
  7. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,757
    Female
    Dundee
    Hi Cristal ands welcome to the forum. I’m glad you’ve found us. Once you’ve had time to have a look around you can come here and ask anything or share how you feel - or even just have a rant! There’s always someone around to listen.
     
  8. Junipar

    Junipar New member

    Nov 3, 2019
    1
    Female
    Watford, Hertfordshire UK
    The connection that i have with Dementia - My Mum passed away on 14th February 2018 from Dementia, i am her only Daughter and i was her sole carer. It was tough to watch my Mum going in to decline from this debilitating illness. I still miss my Mum so much, she was always there for me, when i had a problem i could always talk to her.
     
  9. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
  10. Nanniesue

    Nanniesue New member

    Nov 3, 2019
    3
    Hi my name is Sue and Im a full time carer for my husband who was diagnosed with lewy body dementia about 7 years ago as well as our son who has Aspergers.
     
  11. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @Nanniesue you are welcome here and I hope you find the forum to be a friendly and supportive place.

    You have a lot to deal with there but 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. There is also a Dementia Guide in the list.

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

    Nanniesue New member

    Nov 3, 2019
    3
    Thanks for the warm welcome! My husband is middle to late stages but like a lot of others has always denied there is anything wrong with him. We have a lot of rainy days but just as you think it’s never going to end a rainbow appears and the sunshine comes out again! I love my husband dearly and want to keep looking after him till the very end or till I’m not the best for him. I think the hardest part is not been able to spend the quality time with the grandchildren like I used too. My husband can’t be left now and the only person he will allow to help him without getting upset is my son-in-law. On the plus side when he’s good he still loves the grandchildren coming ( in short bursts) and playing picture bingo or snakes and ladders to name a few it gives us both a boost
     
  13. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    I understand where you are with all that. I'm now a few years in since my wife's diagnosis and, like you, want to keep my spouse as well as possible, and with me as long as possible. Unfortunately we had a safeguarding issue a few months ago and the result has been that I can't let my wife out on her own again and her deteriorating condition also means that things like foreign holidays together are now a thing of the past, oh well. On the brighter side, she is now in Day Care 3 days a week and, luckily, loves it.:)

    I often think that dealing with dementia is probably like trying to eat jelly with chop sticks. A sense of control never seems to last long!
     
  14. Nanniesue

    Nanniesue New member

    Nov 3, 2019
    3
    Yes no foreign holidays ☹️ And definitely 24/7! My husband wouldn’t entertain day centre although I have recently brought it up again and he’s not as objective. I was put off by an admiral nurse and someone from the rapid response team whom both seem to think it was a bad idea more or less said they’re not any good ones. He had an infection a few months back and we had a really bad few weeks but with the infection gone and his tables reviewed he’s a lot more settled again. I think it’s something to look into just the same experience tells me you’re right about those chop sticks!!!
     
  15. FuzzyDuck

    FuzzyDuck Registered User

    Nov 6, 2019
    18
    Hi. I have a difficult situation in that my mother is in mid-term Alzheimer’s and is cared for by my Father. The main difficulty I have is living overseas, which makes visiting both difficult and expensive. I try to get back 3-4 times per year. I have a brother who also lives a long way from them (he is in Essex, they are in North Yorkshire) so dad is quite isolated.

    Dad is in many ways doing a great job, but is struggling. He’s a proud Yorkshireman and so is reluctant to look for help. When we call, usually “everything is fine”. When we visit, plenty of things are far from fine.

    You may now get fed up of hearing from me, because I am trying to address the “not fine” things by advising him. He will take some advice but, sadly will ignore most, but all I can do is advise. Sometimes, I don’t have answers, which is why I am looking for some of the answers here.
     
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,735
    Kent
    Welcome to Dementia Talking Point @FuzzyDuck.

    Long distance caring is so difficult when you have to rely on as much as your father wishes to tell you.

    Now you have introduced yourself it will help if you start your own Thread in the section I care for a person with dementia. This way all support will be easy to find under one heading.

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

    No one will get fed up of hearing from you. :)
     
  17. Klonky

    Klonky New member

    Nov 8, 2019
    1
    Hello everyone,

    I have joined this forum because my mum has early stages of dementia, hope to find out what type soon, but all the signs are there.

    I have called myself Klonky because that is what my mum used to call me when I was a little girl and I might have to use again if she asks "who are you"?

    Pretty sure I will be posting more and more.

    Love to you all xXx
     
  18. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,019
    Male
    Bristol
    Hullo an welcome to the forums @Klonky. You will certainly find plenty of advice and support here as you find your way around, though you appear to be preparing your self already with a wee bit of humour.
    If it is any use to you during the process of diagnosis then the factsheets and links at https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis may be worth reading. If you need to find local memory cafes or any other support services then put your postcode into the box at https://www.alzheimers.org.uk/find-support-near-you
    All the best to you too.
     
  19. Amethyst18

    Amethyst18 New member

    Tuesday
    1
    Hi..I just need to talk to someone that understands...my brother died suddenly 3 months ago...he lived with my mum and as he was retired was her primary carer. I live close by and see my mother every day ..my mother has dementia but has only now been formally diagnosed after displaying symptoms for around 2 years...Following my brothers death I didnt want to leave my mum on her own so moved into her home where I have been caring for her while continuing to hold down a full time job. I have now recognised the severity of the illness and have managed to put in place a care package with social services who have now started coming in to help 3 times a day....this will hopefully allow me to move back into my home...the problem is my mother wont accept the help that is being offered..She lies to the carers by telling them that shes already eaten when they offer to cook her a meal..wont accept help in showering etc and whilst I understand she is trying to maintain her independence there is no way she can live by herself without this help . I have had door sensors put on the doors to prevent the wandering..she has a wrist alarm in the event of a fall and a hand rail to help with the stairs. I feel as though I can do no more..she doesnt want me in her home...she makes up stories about me accusing me of wanting her house/money etc and now wont even be in the same room as me... she spends most of the day either slerping or crying and I am on the brink of a breakdown myself....I need to move back to my home for the sake of my sanity....am I being selfish?
     
  20. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @Amethyst18 and welcome to the forum.

    No, you are not being selfish. Unfortunately these circumstances are all too common and sometimes a carer has to wait for a crisis to happen before they can get the help that's needed put in place.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience, which they will share in a friendly manner..
     
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