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.

Nothing, just endless nothing

Discussion in 'I have a partner with dementia' started by Mibs, Feb 21, 2015.

  1. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Hi folks, it's me again - husband with mid stage AD and me endlessly ranting.

    It's a year since hubby saw the consultant and was diagnosed - she promised to post some helpful literature and prescribe medication. NOTHING HAPPENED.

    Our doctor, fed up with the delay, prescribed Aricept - my husband took the tablets for a week, had instant explosive diarrhoea and refused to take any more. He then made a decision (probably the last time he was able to decide anything) not to go to the Memory Clinic again. Result? discharged from further contact with the psychiatric nurse. NOW NOTHING'S HAPPENING.

    He had a visit from an incontinence nurse - my husband cannot hold a conversation with anyone about anything, let alone loss of bowel control, so her visit resulted in NOTHING HAPPENING.

    Today, I've received a letter from the Alzheimers Society telling me that we are currently 'inactive' on their system and they won't be contacting us again. That definately means NOTHING'S GOING TO HAPPEN.

    My husband has been diagnosed with a terminal disease for which there is no cure - I understand that. I struggle with the complete abdication of responsibility and care - and downright interest - from members of the medical profession.
    I do, however, bask in the warm glow of constant attention from my doctor and helpful literature freely available. Crikey I hear you say - what life threatening condition do I have? Asthma - and just for the record from personal experience, it's life threatening and there is no cure.
    So why doesn't anyone care about dementia - I mean really care enough to ask how they can help? I know why, and so does everyone who posts on this forum. Nobody has a clue what to do, how to cure it or even how long it lasts - so empty promises and evaluations are made, boxes are ticked and backs are turned. It's a familiar story and we all tell it.
    Thanks for listening.
     
  2. malc

    malc Registered User

    it's election time so the politicians care about dementia at the minute,but the spin only shows old people,no mention that you can be working age and get it,my wife now 44 and getting worse,so you can imagine how p****d off i get with the lack of help and support,i'm sick of ads on the telly ramming cancer down my throat every 5 minutes.
     
  3. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Exactly the same here, Mibs. I've seen the difference between care after a stroke, and 'care' with dementia. Dementia care? Don't make me laugh! I won't go into everything again as happened to me, caring for my husband, but you never knew such a bunch of people, none of whom knew what they were doing, plus all the empty promises that came to nothing. And who gets the blame?

    Say no more.

    How many times have I told everyone who used to be involved with us that hubby cannot understand anything on paper? Enough times for it to make a difference. But it never did. They still send everything to him, expecting him to make any necessary arrangements for appointments himself. I wonder what'll happen when he ain't here no more. Yup. It's that bad.

    So I do everything myself as best I can. Perhaps leaving me to cope wasn't such a bad idea after all. It meant I found everyone on here who I chat with. Luckily, we've all got a lot of knowledge behind us, and can pass on what we know. At least that's something we can all do. I could not survive without Talking Point.
     
  4. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Anger is all I have Malc, and, of course, deep sympathy for your wife and yourself. I attacked my husband's dementia at first with a gung-ho attitude, asking questions, making appointments, sending off for literature, books, anything with dementia in the title. But it's futile, isn't it - there isn't anything to be done, and I find the vote catching aspect particularly disgusting. I wish I could be calmer, but for the moment, seething is what I do best.
     
  5. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Oh Chuggalug, how you've helped me (and the rest of us) with your - tell it exactly as it is - posts, and sympathetic help. Thank you for bringing up the letters, couldn't you just spit. I've never met such incompetent morons in my life, and when they insist on speaking to my husband, I always put him on the phone - bless him, he's away with the fairies, so no harm done. Sorry for ranting, it always gets to me in the wee small hours.
    Take care and get some sleep x
     
  6. malc

    malc Registered User

    been there done that with leaflets etc,even went to our local memory cafe with the promise of younger sufferers but soon realised north east lincs alzheimer's society was just jobs for the girls and they really didn't give a s**t about the members,which was quite apparent when we heard from a third party the woman who ran it for a while was leaving,actually in the queue for a carvery one lunchtime,then the head woman left without having the decency to tell the members,knew when the staff were going to her leaving do,government and benefits system aint got a clue either,i've realised for quite a while i'm on my own through this and nobody gives a rats,why can't alzheimer's be more popular like cancer,i might get some support then!!!
     
  7. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    I've decided that it's the expectation of, and waiting for help that winds you up the most. I really fell for the 'Memory Clinic' - seriously, I did expect a fully staffed clinic, reception, nurses, doctors, literature, sympathy. I thought the clue was in the title. What we got was a airless, windowless cubby hole of a room, with a nurse who had a facial tremor. This meant that when she asked my husband a question which required the answer 'yes' - she was shaking her head from side to side, and so he answered 'no'.
    You couldn't make it up. Yes, I know she couldn't help it, but is she in the right job?
    The plus side is we still laugh about it, well my daughter, who came with us, and I still laugh. My husband has long forgotten.
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,782
    Salford
    Hi Mibs
    I think you hit the nail on the head with a couple of your comments "it's the expectation" and "Nobody has a clue what to do". I did the whole memory clinic, doctors, measuring, questions and all the rest with my late mum some years ago and although it all had really good names none of it really did anything because there's nothing that can be done.
    Lots of fancy job title, but all they do is diagnose and desert (and I don't mean the kind that comes in a dish with ice creams and a sparkler).
    I had vaguely hoped they had done so little for my mum because she was in her late 80's, however, when some years later my wife was diagnosed in her mid 50's same story. You get lots of assessments, appointments and a few tests but once it's diagnosed you're on your own, no Thunderbirds are go...International Rescue don't turn up with all the kit to help you, nurses don't parachute in to help, they've do their bit and off the go.
    The reason you're disillusioned is because you had expectations, the reason nobody has a clue what to do is because...well...because nobody has a clue what to do so they leave you to sink or swim and occasionally throw a life belt to the drowning.
    Meanwhile the PM has promised to train doctors, nurses, porters and cleaners in the NHS to be Dementia Aware, why when the first thing the NHS does is desert you?
    K
     
  9. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    I think I belong here too ....sadly! Been looking after my husband for 4 years , nearly 5! Haven't had any help whatsoever . Our problem is mainly at night! Hubs is up at least 4 times and as you can tell by now I give up trying to get some sleep! Most of the assessments are done during the day and we always get "complimented" how well we cope!!!???? John has capacity still but struggles with word finding, memory , mobility and gets a bit muddled and confused at times. He is so aware of his dementia and it's heartbreaking at times. It's beyond me why the NHS don't treat dementia as an illness ! Why do we get no support and why do we struggle on our own. So so wrong! There's no dignity and no morality and we are told to wait for a crisis to happen before the services jump in!!! I am not prepared to put my husband into a crisis situation!!!!! Why should I , how dare they suggest that! As he has also COPD, Epilepsy and mini TIA,s , he is limited to what medication he can take so no sleeping pills. I am very sleep deprived and dog tired but soldier on ! I have to


    Sent from my iPhone using Talking Point
     
  10. Adcat

    Adcat Registered User

    Jun 15, 2014
    290
    London
    Hello Mibs,
    I just read your post which was rather timely as I am up with my dad (mixed dementia) currently he is wearing 2 pairs of trousers, 3 shirts and 2 jumpers.
    I am trying to stay cool and calm but my throat is sore, I have earache and I'm exhausted. I have just made us both a cup of tea and I am praying that he will go back to sleep.
    My mother had lung cancer. 24/7 there was someone I could talk to for support
    Aside from TP I don't know anywhere else that has any understanding of what we go through.
    Have you thought about contacting your MP? I bet that would assist given that the election is around the corner.
    Take care x
     
  11. truth24

    truth24 Registered User

    Oct 13, 2013
    5,726
    North Somerset
    So sorry to read all your posts and wish I could offer you some comfort but don't think I can other than cyber hugs. We did get a lot of help in the end but think that was due to my daughter's rather forceful managerial manner (she doesn't take any cr..p from anyone) together with her DIL's insider knowledge (works in care services in another part of the country) that they got things moving for us and continued pushing when necessary, but it shouldn't have to be like that.

    Sent from my GT-N5110
     
  12. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    I don't know what to say. This is appalling. So many people just left to get on with it. It's just wrong, so wrong.
     
  13. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    You're at the stage I went through, Mibs - the angry part. It ain't nice being abandoned mate, but after a few years of it, we'll learn how to cope. We won't always be very good at coping, but we'll do it.

    Quite honestly; at the stage we're at now - from all the hoops I see people having to go through to get anything, I've decided I can't be bothered to fight it all through. It would possibly drive me insane (not joking there), if I had to go through being called a liar, or being threatened again. I'm just not going to do it and have a quieter life. If I've managed alone for six years, Mibs, I can manage the rest.

    Love to you.
     
  14. Mibs

    Mibs Registered User

    May 26, 2014
    73
    Derbyshire
    Dementia on the NHS - Diagnose and Desert

    With thanks to Kevini for a brilliant slogan - my question now is what do we really really want? I want to connect with someone, a medical professional who can show me a path to take to care for my husband. Not a singing group or a memory cafe because that's a social solution, a big 'make the best of it' plaster. My husband couldn't sing before he had dementia, and he's too young for the survived the war generation. We looked in at a memory clinic, my husband can't hold a conversation with family let alone strangers.
    So what do I (and my husband) really really want - not to feel an outcast from society, someone on the sidelines of care, that's what.
    What do you want?
     
  15. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    The problem is that there is no cure, precious little treatment (as in - drugs) and the effects are classified as social care problems.

    If it were re-classified as a neurological problem there would be far more help. But this would require funding...............
     
  16. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    A good nights sleep for starters and good care and support for my husband and dignity for my husband from the professionals would be a good start


    Sent from my iPhone using Talking Point
     
  17. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    Oh and the NSH to treat dementia like any other illness!!!


    Sent from my iPhone using Talking Point
     
  18. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I have all I want, Mibs! Now that I've had to make up my mind to go it alone, I read books, I come here, I do my best and make time for hobbies.

    When the SS were involved, long, long time ago, they wanted to send me a wheelchair-bound woman and HER carer! That was when I was having to deal with the violence that was there in those days. I told them I couldn't protect her if anything happened, as I also have a spinal condition and have to have a walking aid to go out with.

    So I was told I'd be sent someone else. Then it was back to the same disabled woman. I can't be AGAINST disablement, I'm the same! But I can't protect someone else if there's any bother.

    No, a quiet life for me. Books and Talking Point are my points of reference. Not other's who just haven't got a clue!
     
  19. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    It's good advice but comes from bad experiences and having too! I wish we wouldn't have to in an ideal world of dementia but like you Jen, I cope as I get stressed out when dealing with the box tickers much better and calmer without them xxx


    Sent from my iPhone using Talking Point
     
  20. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I've occasionally come across what's been said about government training for dementia. I just wonder what would be done. Would they all sit in an office and have to work from books? I had to, for a different kind of training! That was back in the early to mid nineties.

    The mind boggles, I'm afraid! Nobody can ever know what it's like until they, themselves, live with it, and I wouldn't wish my troubles on anyone else, now that I've had time to think about it.
     

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