1. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    Hi All,
    I haven't posted in a while following my Dads death in November, it's still difficult times but I do read the heartbreaking posts and respond where I can to give support however I always wish there was more for everyone in the way of support in local communities, I remember with Dad the issues we faced such as sleep deprivation (because he was up all night wanting to go home when he was at home), the incontinence issues which are so difficult to deal with and the bizarre behaviours that left us totally flummoxed as to what to do and how to help Dad, it's such a disturbing and confusing time and you often feel you are so alone, I thank goodness for TP who helped me with many questions and gave endless support which I will always be grateful for however so many people don't know about the group or don't have the ability to go online, it also seems very hit and miss as to how much help people get.
    I have read the government's pledge of £300m towards fighting Dementia and of course as we all do I pray we will one day find a cure........but it led me to think what is the wish list of the people going through this today from both the sufferers and carers perspective...........this may have been asked before so sorry if it has but I would like to create a wish list that if we had these things it would help us today deal with this horrific disease that erases our loved ones before our eyes and leaves us feeling so helpless, for example on my wish list I would like to see a local Doctors Surgery support group for newly diagnosed sufferers and their carers so they can get an understanding of the illness and where they need to go for help...........something at a very local level and someone they can sit with in a small group and discuss their concerns.......the group would be local enough to support each other through tough times ahead.
    My wish list is long and this is just one of many but I would love to know what's on other TP members wish list?
     
  2. keywest67

    keywest67 Registered User

    Mar 19, 2012
    169
    Coventry
    We always coped ok in the day, Dad was manageable until around 6 in the evening when he would start asking to go home, by 10 he would have a bag packed and then through the night he would be up, looking for things, hallucinating, getting aggressive with Mum, a total nightmare........I wish there was some support or even a night care centre so that carers can get some sleep.........it's impossible to look after someone 24/7 with so little sleep
     
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    That so rings a bell! My husband is pretty good during the day but by early evening it starts and I am up with him most of the night!


    Sent from my iPhone using Talking Point
     

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