1. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    Evening all,

    Today we finally got a diagnosis of Vascular Dementia for dad - and I think we all feel relieved.

    The AS people were lovely and very encouraging, although they were very clear that there is no treatment available - just to keep healthy and hope it holds off as long as possible. We have now been 'signed off' by the health workers bar a GP check (they said every 12 months). We were given a load of literature and told to expect a phone call from the AS people in around six weeks' time.

    So, other than LPA (already sorted), kinda not sure what to do now for the best! Got DVLA to sort and all that goes with that, but what now? I'd be interested to know perhaps the one big (or little) bit of advice those of you with more experience may have for us.

    I think we've got a long road ahead of us - but I don't feel that we're alone now.
  2. Bod

    Bod Registered User

    Aug 30, 2013
    Keep reading and posting on here.

  3. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Take each day as it comes and enjoy the good times x
  4. Cinder

    Cinder Registered User

    Dec 14, 2014
    I have no personal experience of vascular, we are Alzheimer's carers, but a friend is caring for someone with the condition.
    I wish I could offer advice on a spiritual level, but I'm a practical person. I say, invest in very good, tumble-driable mattress protectors.
    Learn how to make nutritious soup and keep the brain active- puzzles, crosswords, music etc.
    And ask for help. We waited nearly 18 months before asking for help. Don't do that. Get all the help you can. It's a long road, but you don't have to walk it alone.

    Sent from my iPhone using Talking Point
  5. Beate

    Beate Registered User

    May 21, 2014
    Get his affairs in order.
    Apply for any allowances, benefits and exemptions he is/you are entitled to.
    Go to social events with him like Singing For The Brain or Coffee Mornings.
    Make friends with other carers.
    See what help is available for him and you as a carer. Don't wait for a crisis. Get that carers assessment you are legally entitled to. Interest him in day care.
    Learn about compassionate communication. Ask about courses about dementia.
    Go with the flow.
    Keep reading and posting.
  6. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Your pretty much organised by the sounds of. Well done. Its not easy when your dealing with a diagnosis of a loved one physically or emotionally.

    Have you asked social services for care needs assessment? ..for you as a carer and your dad! They are required by law its one of your rights..
    Doesnt mean you have to accept or will be offered help..just worth doing.for the future!
    It gives you a card that tells someone in an emergency that someone relies on you!.cheap leisure stuff etc. ..some comes via carers projects.

    Alzheimers society activities are great. I care for my dad who has dementia and have for few years now. I take him to some. Choir craft pottery ..they are for carers and people with dementia or cognitive memory impairment..really supportive.

    The best advice i can give is..
    If you need gp ring them when you need them.
    If you need advice from memory clinic or wherever the diagnosis was...you dont have to wait 12mths. If theres an issue ring them.

    If theres help available..take it small or large..you are not superhuman (says me who tries to do it all)

    If you get the brush off or cant get what you should then dont give in..speak louder...

    Read the factsheets on the alzheimers website..not to frighten you..but forewarned is forearmed. ..my mum get a shock when things happen..im expecting those things..and deal with them ..and move on. Theres enough to learn and enough emotions involved without having shocks all the time.

    Its ok to say no to them and you dont have to apologise for doing whats best for them when their behaviour changes.

    Never correct them if its not something important!. If he thinks his versions right go with it!..never say remember!!!

    If they say yes ive had my meds or yes ive turned the tap off...just double check without making it obvious. They will believe they are telling the gospel truth..

    Take a dementia friends session..its very informative. And your family can do too.

    Best wishes

    Sent from my GT-I9505 using Talking Point mobile app
  7. Bassetlaw Badge

    Bassetlaw Badge Registered User

    Oct 30, 2012
    Thanks everyone. Had a couple of days to take it all in but dad doesn't want to talk about it. Not sure if he remembers it!

    Taken the advice about not saying remember - and think I may have made a booboo on that one as I used to tell him that if he remembers to remember his phone he doesn't need to worry about forgetting things as I put reminders in there for him.......but it doesn't really work as he forgets what it's making a noise for!

    I foolishly thought that if someone else told him that there was a reason for his forgetfulness he would listen, but he still insists that it's all because he's 'not really paying attention'. I could go on but I'm sure that it's all too familiar to many of you.

    I just want to feel I am doing something vaguely positive and constructive about the whole situation and when the AS call comes next month to ask what we've been up to I don't want to say 'well, nothing really'...........
  8. Hardcore

    Hardcore Registered User

    Feb 4, 2015
    I recommend the book 'Contented Dementia' by Oliver James

    My Mum has recently been officially diagnosed with vascular dementia (this came as no big surprise!). I am aware that the carers role is an incredibly difficult one and the support I and my Mother have received from the Health Service so far has not filled me with much hope. But I have found hope through a wonderfully positive approach to dementia … 'Contented Dementia' is like a self-help book for dementia carers. I would warmly recommend this to you and your family.

    I had no idea what my Mum was going through but this book reveals what it means to have dementia and how a common-sense approach by carers is equivalent to emotional abuse… leading to challenging behaviour, dependence on medicine and eventual emotional shutdown - the cabbage state. :mad: So I would recommend this book as a life-saver. :) I can also recommend the Contented Dementia workshops held in Burford. I came away from the workshop with a deep understanding of dementia from the point of view of the person with the condition; and the tools/strategies needed so that my Mum can continue her life with her humanity and dignity in tact. No drugs required; just a lot of time spent getting on the same wavelength and making life a lot more stress-free and happy for everyone involved.

    All the best for your future journey with your loved one.

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