They don't tell you these things...

Discussion in 'I care for a person with dementia' started by drummergirl, Oct 11, 2014.

  1. Welsh Colleen

    Welsh Colleen Registered User

    Mar 23, 2009
    13
    Wales
    I found a really good 'sleepsuit' which stops my hubby taking his pads of at night. Bit pricey but really works. They zip up the back so the wearer can't get out of it. Washes well.
    KC sleepsuits

    Medicine try suggesting it's her favorite :)
     
  2. johnkeats

    johnkeats Registered User

    Apr 15, 2009
    5
    lancashire
    drummergirl .your story is heart-rending .i have been in the same bad place that you are in now from the beginning to the end and it is soul destroying.take comfort in the fact that you are a good person who feels love accepts responsibility when others will not,that makes you a better person than they will ever be.take care alot of people are in your corner.
     
  3. Varandas

    Varandas Registered User

    Sep 2, 2013
    227
    Hampshire England
    Thank you drummergirl

    Fantastic, true and sad post. You said it all and so well.
     
  4. Ninalily

    Ninalily Registered User

    Sep 8, 2014
    2
    Thank you for this. It resonates with me completely

    I would add:

    The don't tell you that the only advice you will get will be yet another support agency giving you their glossy booklet on what dementia is - by now you definitely know what it is - and giving you a list of support agencies who will five you a glossy booker telling you what dementia is and giving you a list of support agencies who will give you a glossy brochure telling you what dementia is and a list of support agencies who will...

    love

    N
     
  5. TaraP

    TaraP Registered User

    Jun 4, 2013
    27
    #145 TaraP, Nov 11, 2014
    Last edited: Nov 11, 2014
    You have said it so well

    You have spoken the words I want to speak from the rooftops. Thanks for an amazing post.
     
  6. halojones

    halojones Registered User

    May 7, 2014
    438
    So true, all of it.....I have also said its like wading through treacle.!!..I am truly shocked at how difficult our lives are made by the people employed to help us,the system ?...its absolutely disgraceful..!
     
  7. Jax55

    Jax55 Registered User

    May 29, 2014
    10
    Yup I'm with you on this. I've been caring for my mum for the last two years, she has vascular dementia, and the incontinence is the most difficult part for me to deal with. I think the politicians should maybe spend a few days in a care home and see exactly what the reality is.

    Jacqui

     
  8. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,968
    Enfield
    I thought I would come back with the latest annoying event.

    My husband has been receiving Tena incontinence slips and pads. This year I received a letter telling me it would no longer be received from Tena, we would now get a new supplier starting in August. They are rubbish, the tabs on the slips are not good. Once you put them on pressing the blue tab ( that is if they stick). When you need to check, you then have to pull the white tab attached to the blue one and re-stick. Ha Ha!!!! that's as bad as the blue one. Never ever had this trouble with Tena. I could pull them on and off all the time and they would always stick back.

    The pads are not as long, so I am in a dilemma, do I catch all at the front or the back. I have had some awful messes to clear up with these. I contacted the Council, they informed me, they can't do anything about it. They had received many complaints about these, but, this is a new contract from central ordering, another cut back, like stopping the collection of soiled incontinence items. How can someone in an office just order stuff, because someone in Spain can quote cheaper. Even though the quality is not as good? The district nurse called last week, when I told her, she said she was getting complaints from a lot of her customers as well.

    What happened to all that election talk of taking care of the sick and elderly? I give up.:confused:
     
  9. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,674
    North West
    I sympathise Mal. Our incontinence service only provide pads that are woefully inadequate one someone reaches the stage of complete incontinence. I have heard that this is a very common problem. A District Nurse said to me that she wondered what was the point of a service that could not provide adequate aids.
     
  10. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    God, reading this is like the story of my life now.

    When it's written down like this I don't know how any of us cope.


    They also don't tell you that you will be jealous when a friend's mother gets diagnosed with cancer and has help that you would love to have. You are now that horrible person that envies someone with cancer - how low can you get.
     
  11. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    OMG, I'm so sick of this one!! I've had this one - you don't actually get any help, but they are so full of 'advice' - no actual help mind, but they have leaflets
     
  12. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,223
    Female
    The Sweet North
    'Signposting'.
    My least favourite word.
     
  13. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    #153 chrisdee, Oct 26, 2015
    Last edited: Oct 26, 2015
    You have hit on a rich seam of truth

    Drummergirl - wow! this is the 'real truth' of the dementia situation, I have never seen it expressed so well. I am sick of those in authority and others who have had a skirmish with dementia but not been at the coal face pontificating with their plastered-on sympathy faces and empty platitudes.
    Just as a non-miner cannot understand the sweat and grime of the coal - face, so those who have never done the hands-on stuff . . . come to think of it, sweat and grime are usually heavily involved. Plus emotional exhaustion and thinking you have a mental illness yourself. I'd do almost anything to get the 'real truth' out there. Bring it on!
    Oh, and posh folk with live-in care, the 'family treasure' syndrome doing the heavy lifting don't count
    either. Sorry.
     
  14. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    Apology accepted. :rolleyes:
     
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,239
    Cotswolds
    Me too :mad: x
     
  16. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    They also don't tell you that there's no money except yours. This is a very expensive illness and you have to pay for everything. Nothing is free except the 'signposting'.
     
  17. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,968
    Enfield
    #157 Mal2, Oct 27, 2015
    Last edited: Oct 27, 2015
    It's just frustration. I can understand your comments. It just seems so unfair.

    I have been told one persons treatment for cancer is £40,000.

    Person looking after a relation with Dementia:-

    Money in = £80. attendance allowance. (applied for carer's allowance £30 a week, declined as I received £40 a week pension, so not entitled, if I put him into a care home it would cost them hundreds a week. This I do not understand, I am still a carer, but not entitled to anything.
    Money out = carer (if needed) £15.00 + per hour. help with shower £12.95 for 45 minutes.

    I bought a mobility van ( I wheel my husband into the back ). I asked DVLA if I could receive any discount or free road tax. They asked if he had mobility allowance, I said no. Can't have it then, I was told. My husband cannot walk, I use a hoist to get him into the wheelchair . How is that any different to people who have trouble walking and have free road tax, he is still immobile? I asked if he could apply for mobility allowance and was told no, they have to apply aged under 65.

    Something wrong somewhere.
     
  18. wonderwoman

    wonderwoman Registered User

    Sep 12, 2012
    22
    Well done

    well done drummergirl with you all the way, tell it as it is people should know.
     
  19. banger696

    banger696 Registered User

    Sep 17, 2015
    225
    North East
    I was going through most of what the OP posted, until the medication amisulpride arrived and things have calmed down considerably with the odd bouts of confusion even mums memory is getting better.
     
  20. Casbow

    Casbow Registered User

    Sep 3, 2013
    997
    Colchester
    Drummergirl

    Everything you have said is so true. I feel you should publicise the
    "dementia experience", Unless you live with this awful illness no-one can know what the realility is like.. My closest friends try to help, but it is no substitute for a normal life. No c onversation that makes sense, no help with anything in the home or normal living. No dec isions to be made together. Everything is down to to me (or the family or carer} Our beautiful sons hardly manage a weekly phone call. What do they want to hear. I can't say everything is great or even fine. Well I could but that would be lying. It is a vey lonely and isolatng illness. When my husband was first diagnosed with dementia i said that wished he had been diagnosed with cancer. I still stand by that. We can fight cancer. Nothing can be done to fight dementia. There is nothing to fight with. After 50 years of marriage my husband does not know I am his wife. He does not know where he lives. Our life is miserable and nohing to look forward to. I just get on with it day to day. Our future has been snatched away. No friends visit anymore. Sorry. I am all doom and gloom.xxx
     

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