Caring for my wife who has Vascular Dementia

Discussion in 'LGBT people with dementia and carers' started by katesmate, Jan 16, 2016.

  1. katesmate

    katesmate Registered User

    Dec 8, 2014
    1
    My wife & i are a gay couple who have been together for 47 years,& Linda has vascular
    Dementia & many other Chronic illnesses. i feel utterly alone & isolated . I care for Linda myself 24/7 yes it is hard ,. I have had negative results from social services ect & thats putting it mildley. We live in rural wales & most of our family are in the midlands where we originate from. I tried the carers wales but they are no support. Is there any where else to go ? Cathy.;)
     
  2. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I should carry on banging on the door and shouting loudly until you get the person who does their job and cares Sorry I have no better advice .They are out there.
     
  3. chris53

    chris53 Registered User

    Nov 9, 2009
    2,929
    London
    Hello Cathy, a warm welcome to Talking Point, so sorry you feel so alone and with no support, herewith a link which may be of help to you and Linda
    https://www.alzheimers.org.uk/local-information/dementia-connect/#!/search
    Please know that you will get support snd understanding here, it can be hard and so isolating when you are a carer,add dementia and sometimes you don't know which way to turn:eek: you can always call our helpline who may be able to offer more ideas to help
    https://www.alzheimers.org.uk/helpline
    Above all please keep posting, always someone around to lend an ear
    Take care,best wishes to you both
    Chris
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    Oh my goodness poor you, poor both of you x

    I'm so sorry that you haven't found your carers organisation to be more help. I'm guessing that this is partly because of your very rural location. I live in a town and the carers cafe was my lifeline - well one of them, the other was the lunch club/day centre.

    Are you receiving attendance allowance ? If not you need to be and it is non means tested and very helpful with some of the extra expenses you will be incurring already I'm guessing.
    I have put together some basic info that covers a few of the questions that people ask first of all and has some phone numbers, ignore what you don't want, from your post it is a bit difficult to guage where you are in the process and what you might actually need.

    here goes, come back and ask lots of questions, there is a lot of support and friendship on here


    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it
    http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf

    You can also ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.

    If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081.

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.


    The Dementia helpline is a useful number to have

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    I saw earlier today that someone had information about admiral nurses (specialist dementia nurses) which you might find particularly useful as your wife has multiple health issues as well. This is the number they gave Admiral Nursing Direct on 0800 888 6678 FREE or email direct@dementiauk.org

    I would normally advise you to phone for an assessment for Linda but you said you had not had any help from social service adult care - i'm not sure why but when you've have a bit more time on here you might want to share that experience.

    As I said pls feel free to disregard anything that isn't useful. I hope that you will now begin to get the support that you need xxx
     
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi Cathy, welcome to TP
    You're not alone in feeling that the social services are less than useful and I guess if you're rural this is even worse as you probably don't have any support from things like Age or dementia cafes.
    I went for 18 months doing it alone until my wife was sectioned last week and I won't lie it was hard, very hard, but I found this place and the people on here helped a lot, if nothing else it makes you realise you're far from alone in what you're going through.
    Keep posting.
    K
     
  6. Lizzie10

    Lizzie10 Registered User

    Aug 11, 2015
    17
    Scarborough
    Vascular dementia diagnosis

    We are a gay couple we live in Scarbrough and inside 4 weeks have been offered more help than we need right now. Also friends are being very helpful 2 of them rotoring car rides for me and company to go to the Big Sing for the brain
     
  7. helenmiller1985

    helenmiller1985 Registered User

    Jul 5, 2016
    12
    One of my relatives was getting care from a private nurse/carer, but that was not cheap. I understand that situations are different. And I am sorry to hear that Social Services were not very helpful.
     

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.