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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Sep 21, 2018.

  1. Tassie

    Tassie Registered User

    Jul 13, 2017
    18
    Female
    Durham
    I have been in the same position but changed dads GP which helped hugely and now getting far more support .. in the way of sympathetic ear but still if self funding you are expected to deal with everything yourself.
     
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,373
    leicester
  3. memel

    memel New member

    Oct 15, 2018
    1
    Hi my Mum has Alzheimers and Vascular Dementia, who knew you could get both, but we joke that at least with Alzheimers Mum forgets she has dementia - boom boom!! She's 83 and dad is 81 her full time carer at home bless him. I fought to get a diagnosis for 5 years and finally we had it in June this year and I have had to witness a very rapid decline of both my Mum and my Dad who is exhausted. I am unable to work full time now as I need to go over at least twice a week but I'm lucky as my husband supports me so I can go to appointments etc and work part time but it's so emotional but I get to meet a different person with every visit and I get to chat with someone that struggles every day to make sense of her surroundings now, even thought she hasn't moved and we've not touched a thing on purpose. The worse of it though is I feel completely lost, alone and angry that I have this incredible person just dying in front of me and I cannot do anything to stop it!!!! I find it consuming me and I don't seem to be able to talk to Mum anymore, I've run out of things to do and say so I'm desperately looking for anyone/someone to come in and just talk with Mum. She won't go out unless its in her bubble to the doctor or Morrisons believe it or not but they go exactly the same time every week so it's in her bubble. I paid for her feet to be done just so she had someone else to chat to. She no longer recognises Dad which makes him very sad and very angry with her but I don;t blame him even though I tell him its not her fault and please don't shout at Mum. They've been together since he was 18 and Mum was 20!!! who am I to try and tell him how to deal with this I get to go home at night at the moment. Thank you for reading I appreciate we are all in similar situations - it's a crazy, cruel roller coaster and the worse I know is yet to come.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,896
    N Ireland
    Hello @memel, 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.
     
  5. sjfowler1

    sjfowler1 New member

    Oct 15, 2018
    1
    Hi, my first time here and I came for a very specific reason...the time has come where my Mother can't stay at home any longer on her own. We have found a lovely care home and now waiting for Mum's assessment so we can agree a day for her move. The move, or rather how we 'manage' the move is what is deeply troubling me. Mum has always insisted that she would never go into a home but now, I feel, we are past trying to keep her in her own home with carers. How to I manage this transition...I don't want to lie but I also don't feel like I can present it as a choice that is hers to make. I'm looking for advice on how I can break it to her, I want to be kind but firm and then there is the whole practicality of packing bags, moving personal items etc etc...any sage words from other forum members?
     
  6. thaliadaniels

    thaliadaniels New member

    Oct 17, 2018
    1
    Hi all. Just got in here. It's nice to feel like there's a place where everyone understands what others are going through.
     
  7. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,896
    N Ireland
    Hello @sjfowler1, welcome to the forum, which I hope you will find to be a friendly and supportive place.

    It's always tough when it's time to hand care over to a home but there does come a time when what is needed outweighs what is wanted.

    I know some members tell their loved one that they are going for a period of recuperation on doctors orders and then don't discuss the matter further and do things like the packing in secret. I hope others with experience will be able to tell you how they managed the situation.
     
  8. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,896
    N Ireland
    #108 karaokePete, Oct 17, 2018
    Last edited: Oct 17, 2018
    Hello @thaliadaniels, welcome to TP. I hope you find the forum to be a friendly and supportive place. It’s very true that everyone here will understand when you have a question or want to vent feelings.

    Do take a good look around the site as it is a goldmine for information. When I first joined I 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 and thought these were useful. 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 sorting out useful things like Wills, Power of Attorney etc.
     
  9. Esprit_645

    Esprit_645 New member

    Oct 18, 2018
    1
    Hi, I am helping my Mother to look after my Father who was diagnosed with Alzheimer's about 5 years, we have been ticking along ok but we are at a transition point now. Oh, quick note, Mum has problems of her own including ME. Dad is 80 and up to now has been quite a spritely 80 year old but he appears to be changing now. We have two visits to A&E in the last 4 days and basically he has a combination of tremors and what I can best describe as lock ups... I am in touch with the council to get help and also starting to talk to GP in an effort to coordinate things. I am working through my list but is not the easiest maze to work through. Up until the latest espisodes we were doing OK as a family but now we are struggling. I will get back on here soon to describe the lock ups and tremors when I get time, I am sure others are dealing with the same thing so if they are, maybe they would be kind enough to share some tips on best way to help,
     
  10. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,373
    leicester
    Hello @Esprit_645 and a warm welcome to TP.
    It’s a friendly and helpful forum so I hope now you have found us you will keep posting
     
  11. Tracynb

    Tracynb New member

    Oct 19, 2018
    4
    Hi,
    I’m new to this forum. My mam had the memory test at GP surgery. She is now waiting for the memory clinic referral to come through. Nothing is happening quickly. I just want my mam to be able to get support when she needs it. ( I think this will be soon ) it’s heartbreaking watching the changes in her. She phones frequently asking the same questions. I am constantly checking on her to make sure she is eating and looking after herself. She is getting up in the night frequently. I help as much as I can but feel very guilty that I can’t do more
     
  12. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,896
    N Ireland
    Hello @Tracynb, welcome to TP. I hope you ind the forum to be friendly, informative and supportive.

    Unfortunately getting a diagnosis can be a slow process but you have come to the right place to ask any questions you may have.
     
  13. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,813
    Male
    Bristol
    Hullo and welcome to talking point, @Tracynb. It certainly can be hard work and heartbreaking caring for someone and we can all support each other as we are on the same road. You should never give in to guilt, we can only do what we are physically capable of and you need a few hours to yourself occasionally if you can. I hope you get the diagnosis soon.
     
  14. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,896
    N Ireland
  15. Sunflower80

    Sunflower80 New member

    Oct 19, 2018
    2
    Hello there,
    I'm new to this group and new to forums in general, I want to join this group as over the last 8 years Alzheimer's Society has been a great support to my family and I.
    My Grandmother was diagnosed with Vascular Dementia 8 years ago. Since that day it's safe to say we've been on a journey. Some happy times but more sad...
    I'm personally feeling extremely vulnerable and sad at the moment. This week, my Grandmother has suffered from a number of seizures and as we speak is in hospital.
    I guess I would like some advice from those that have faced this stage of the disease and what to expect from here. A real account, not a watered down version that the hospital is currently offering us. To add some content, Grandma is 80, now bedridden and has been for the last 7 months, the hospital have placed a line into her and giving her morphine when needed, she's agitated and not taking on fluids, a sign was placed on her hospital bedroom door last night which said 'nil to mouth' however she took a few mouthfuls of custard today which the doctor said was 'comfort eating'
    Can anyone tell me if they have experienced this and is my Grandma leaving us? Many thanks for your responses.
     
  16. chris53

    chris53 Registered User

    Nov 9, 2009
    2,930
    London
    Good evening Sunflower, a warm welcome to Talking Point, am so sorry you are feeling so down probably to lack of information from the hospital, am guessing,only from experience that the nil by mouth may be because of her being on morphine,as it can make someone vomit which in itself can cause even more problems, my mum in law has been in and out of hospital for many years and each time we are told..it's only a matter of time,needless to say she is still with us,although has been bed bound for the last year.
    It may be worthwhile phoning the help line over the weekend,to see if the experts there have come across this situation and can point you in the right direction if you don't get any members being able to advise you. The 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
    Take care X
     
  17. Sunflower80

    Sunflower80 New member

    Oct 19, 2018
    2
     
  18. Janes1

    Janes1 New member

    Oct 20, 2018
    2
    Hi my name is Jane My dad has been in care home since January with Lewy body Dementia and my mum dies two years ago she had not long been diagnosed with Alzheimer's.

    My dad was diagnosed and has been on medication for around five years yet i still struggle with it
     
  19. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,813
    Male
    Bristol
    Welcome to TP, Jane @Janes1. Sorry you have had to care for both parents with dementia. You will find many fellow strugglers here if you need advice or a place to let off steam. I hope you will keep posting.
     
  20. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,373
    leicester
    Hello @Janes1 welcome to TP but am sorry to hear of the situation that caused you to need to join us.
    This is a friendly and informative forum I hope know you have found us you will continue to post for information and peer support
     
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