1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Agzy

    Agzy Registered User

    Nov 16, 2016
    853
    Moreton, Wirral. UK.
    So with you and sympathise as the extreme mood swings are the worst to cope with as they come out of the blue. That coupled with the anti social feelings she now has make for difficult decisions but thanks to family and neighbour support I am managing to escape on holidays for solo travelles but for how long? Nobody knows or can guess, good luck.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    I totally agree - it is so relentless. I am fed up of everything being about him- down to the last detail - it is so BORING not to be considered at all.
    It's almost as though I am invisible. Like old time servants who the 'master' never saw..... I really sometimes wish he would go back to his family to live - and then other times, I think' poor old soul' it's not his fault...... and he thinks everything is OK - that's soul destroying in itself.....
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    My friend's husband just had a bad accident, he was in the Trauma unit and suddenly had to be discharged. There were no community beds. One hospital refused on the ground that they did not have a specialist nurse fo his spinal injury. Ironically on Friday she was told to take him home, she pointed out she was not a specialist nurse either, she mentioned a private nursing home, the idea was grabbed. She has signed the contract, she says she had no option.
    Over the weekend he was too ill to be moved, he had an infection. He is being moved today. How much it will cost is as long as a piece of string in this upmarket place, she talks of downsizing but houses are not selling she is very stoic and proud.
    She is old and disabled herself so could not care at home.
    He is autistic but never diagnosed. He has hallucinated for years. Noise and light upsets him.
    It makes me thank my lucky stars.
    As a group Carers our needs can be invisible perhaps because we are too busy to fight, but individually we must 'hold our Space'. Our self worth. We do the most worthy work.

    I read today there is a move to tax online shopping and deliveries to 'save' the High Street.
    Sometimes I just tired of fighting, but what choice is there? So if this is more than a rumour back to the letter writing.
    What we need is someone to take a Case for Carers support on all levels to an Ombudsman.
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    A local County Councillor, and prospective MP, has been trying to raise Cares Causes at County level. She asked me to go and speak in Committee last September -which I did. She, herself, raised an issue last JUNE which she was told would be discussed ..... she is still waiting, and her reminders are ignored.

    If this happens at County level, what hope is there?

    Alice in Wonderland seems quite sane, compared with the way things are run by our politicians.
    upload_2019-2-21_9-4-33.png
     
  6. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    I don't think I'm too busy to fight, I think I'm too mentally exhausted to fight. I do feel as though I am invisible, to the point where I wonder who would listen.
    There has been talk for some time about a tax on online shopping, a cost which obviously the retailers would pass on to the consumers - us.
    But yes, someone to take a Case for Carers support, someone we can call on to speak for us. If only...
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    I wrote to the County Councillor last Autumn carefully explaining the issues or no transport since the austerity measures axed the bus service. She replied asking me what I wanted her to do!!!

    We need a Dedicated Senior Minister with one job only, that is to fight our corner.
    Every issue should be considered with first considering the impact of the policy on unpaid carers and the disabled.
    They have taken the public transport away and now have an idea to tax for deliveries!
    See you all down the Rabbit Hole!
     
  8. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    Exactly - the only way we can get groceries is if Mr Tesco brings them!
    On a slightly different tack - I had a phone call yesterday from Devon Carers - I had filled in a questionnaire back in January, and made rather a sarcastic comment that the form was ideal for me, as I was large percentage Irish - and ideally suited to a form where the pages were not collated in order - ie page 24 followed page 21 ! I then responded to the question they had asked, and now they think I was complaining.......
    They want to ring me back in a week or so, to discover what I was complaining about.,.... so I asked them what was the question above my answer - seems simple enough question - but they did not know because it was no longer there...... hang on a mo... have I time for this nonsense?? No, I haven't. So go away please and let me get on with a day that is daft enough anyway!
    [​IMG]


     
  9. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    This is the whole point isn't it. We do not have the time, the energy or the expertise.

    My hopes for today have already been tipped upside down, I emptied a cupboard and am running out of time to put stuff back. I am sitting here recovering from the things that have held me up today. Well, upward and onward best look at the fridge to devise a quick lunch. X
     
  10. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    472
    Female
    High Peak
    There were a bunch of workers knocking on doors here the other day. Turned out they worked for the local MP and wanted to know about any local issues.
    Well, they got me on a bad day and I had a long rant about the cost of nursing homes and how the LA pays far less (for the same room) for the residents they fund than self-funders like my mum.
    I didn't expect to hear anything but she (my MP) got back to me and is - apparently - looking into it. I replied pointing out some of the many difficulties carers have negotiating the system together with the lack of support and implored her to read the posts here on TP.

    From what I understand, the LA rate round here is about £480 per week whereas my mum is paying £775 + extras. That's a heck of a difference! I'm not against people paying for their own care if they can afford it but I do object to self-funders being charged so much more for the same care in order to make up for LAs not paying enough.

    I'll let you all know if anything comes of it... (But an MP is involved so don't hold your breath.)
     
  11. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    I have pleaded with many 'official bods' to come on here as a guest and spend a little time seeing how we are functioning - only one ever said she would - and I have never heard from her since...... ignorance is bliss I think.
     
  12. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    I think I had a Tipping Point this morning. My first move every day is to get downstairs and have a coffee and a look at my email and/or TP and get ready to face the day before tackling husband and his nonsense. At 8 am my 83 SIL appeared at the door to tell me that since she went to the dentist on Monday she can't hear her TV. She's profoundly deaf!

    I can only assume she hears some high tones normally and has either turned the sound down or has lost that little bit - nothing resembling actual hearing.

    The temptation to take her by the scruff of the neck and fling her out the door was huge. My few minutes in the morn ing are precious.
     
  13. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    funny how we all do the same.... my few mins are having my porridge in the conservatory, with a book - and woe betide himself if he wanders in....... we need time to get our head together don't we?
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,413
    I have a similar routine, my quiet start is essential for a calm day.
    For a while I was being woken far too early, now he sleeps in, a real blessing.

    This week I have been sorting out paper work, things we were involved in.
    This disruption causes unrest, I have had to reassure. Without a quiet start it would be impossible.

    Yes, I enjoy porridge too! A dip into a book, a bit of brain exercise!

    I shall think of you all doing the same!
     
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    473
    Female
    Basingstoke, Hampshire
    Oh I wish.....my husband can be snoring one minute but as soon as I try to get up he's awake and out of bed in a flash. I've asked him to stay in bed for a short while so that I can arrange things such as breakfast but he just says he'll get up and give me a hand (which he doesn't). I don't get a moment on my own in the morning.
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    I think I have reached tipping point this week too.
    On Monday OH woke me at 2.00am washing his hair in the sink. When I asked him why he was doing this at 2.00am he said it needed doing. Well, yes, but why now!!!
    On Tuesday night he was up and down for about half an hour. I asked him what the problem was and he said his neck felt rough. I had a look and he was just feeling the normal wrinkles on his neck! I put some anti-itching cream on just in case....
    Last night I could hear him moving around his room at 1.30am so I went in and found him stark naked on all fours with his back to the wardrobe with a mirrored door!! Turns out he wanted to see whether his hemorrhoids were getting worse so he was looking between his legs into the mirror to check his backside :confused::eek:

    I think he is waking up at night feeling anxious and his mind is scouting around and latching onto a "reason" that he is anxious that needs sorting out then and there.
    No he hasnt got an infection
    Oh god, dont tell me he is starting to sundown
    :(
     
  17. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    You've got to admit @canary that if you were drawing a cartoon to illustrate dementia that image of your husband inspecting his piles at 1.30 am would fit the bill.

    I've had good things and bad today and so annoyed that on such a lovely day I lost my rag. Husband taken to the toilet at 2 pm stood for a full half hour staring at it and would not go. Yesterday he did the same and peed into his pad around 4 pm so today may well be the same.

    It is such a simple thing to do. Toilet, bowl, adjust trousers, pee.
     
  18. Pop66

    Pop66 New member

    Feb 1, 2019
    9
    Oh @canary I can't tell you how much you have cheered me up. I have had such a tough week which culminated in me crying my eyes out when the memory clinic called to find out how my OH was... It all came out, cwarts and all. Poor woman, she probably wished she had never called. I then pop on here today just to touch base and remember that my chaotic world is normal within this community, and you had me laughing out loud with the image of your husband inspecting his piles! I haven't laughed in such a long time, and I feel soooo much better. Thank you - what an absolute tonic
     
  19. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,318
    Female
    South of the Border
    Here is another funny one, told to me this morning by our carer.

    She had gone to a previous client who had a catheter, and was wet all down his trousers as it had leaked. He said it was OK as he had rang his 'Piper Alarm' for help. Just then the phone rang so the carer answered it for her client.

    The Piper Alarm person reassured her that all would be well, as she had called the plumber who would be right round!!!!!

    Carer had a great deal of trouble keeping from laughing as she tried to explain it was not a plumber that was needed in this instance !Q
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    OH has had a bad fall. Has just gone to A&E in an ambulance. Im now off to follow on behind in the car
     

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