1. Little moth

    Little moth Registered User

    Jul 18, 2014
    24
    My Husband has been diagnosed with Parkinson's Dementia. I have been looking at the forum for a while and now is the time to log in.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,890
    Female
    Scotland
    As it is 2 am I guess you are unable to sleep and feeling stressed. Do you have any help with him? Personal care in the mornings or a befriended to sit with him while you get a short break? Are you getting Attendance Allowance which helps to pay for care. Would he go to a day centre?

    Tell us a bit more about the issues you are dealing with.
     
  3. Little moth

    Little moth Registered User

    Jul 18, 2014
    24
    Hi marionq, the d
    Hi marionq. Thank you for replying. I phoned the Parkinson's helpline and someone is phoning on Friday. All we have is POA , finance, it's very much a learning curve. My husband is mobile but even though it is mild dementia it has an impact. I try to go online if he is in the shower etc as he is upset by it all.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    Hello @Little moth.

    I wonder if you may find any local support services like a memory café to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you

    The full list of the very informative Factsheets can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    If communicating becomes an issue, a few handy tips can be picked from the useful thread that can be reached with this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,890
    Female
    Scotland
    Whenever you get a chance to talk online someone will be here to answer.
     
  6. Lirene

    Lirene Registered User

    Sep 15, 2019
    108
    Hi and welcome. My husband has was diagnosed 13 years ago but had symptoms long before. He now has advanced Parkinson’s, psychosis, paranoia, dementia and every stage 5 symptom you can name. He has broken his hip, same one, twice because he is so unsteady, and is currently in rehab. He is not medically fit to have any more operations his orthopaedic surgeons say if he falls again it would be a catastrophe! He needs two people and an etac machine just to get him out if bed! He has fallen out if his chair twice and actually managed to get out of bed once. I had a CHC late October everyone agrees he should be fully funded with 1 to 1 at night. However, before it even gets to panel stage, more and more evidence is being requested. If he falls and attempts to walk he will be seriously injured or worse.
    My advice to you is to get as much information as you can documented, write down everything that happens, keep a diary of daily events, problems, tantrums, arguments etc. Get as much help as you can from Parkinson’s UK, Alzheimer’s Society, Social Services, GP, Neurologist everyone and everything that can help because believe me you will need it.
    My thoughts are with you and I hope you get an easier time than the sheer, stress, frustration. hell and heartbreak I am having xx
     
  7. Cazzita

    Cazzita Registered User

    May 12, 2018
    511
    Hello @Little moth, hope you have a chance to look at the links above and gain as much information as possible. There will always be someone here to try and help you as much as they can. Wishing you luck on this journey x
     
  8. Little moth

    Little moth Registered User

    Jul 18, 2014
    24
    Thank you all for the advice and support, I don't feel so lost now, I know that I can come on here and say how I really feel. I will look at the links and keep track of things. x
     

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