1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Help and advice quick PLEASE!

Discussion in 'ARCHIVE FORUM: Support discussions' started by Mjaqmac, Jan 20, 2005.

  1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Hi Everyone

    Mum is currently in hospital with another chest infection. She's been there a week and a half. They now of course want the bed.

    They are talking about sending mum home with an IV line in her arm for a nurse to come in daily and inject the antibiotics into her.

    I am worried about this as with the Dementia mum keeps pulling the line out in hospital, she's bound to do it at home. I am in no way medically trained and as I understand this is going straight into a vein.

    What will I do? Is it safe to let an Alzheimer's patient come home with an IV line that isn't medically supervised all the time?

    I'm scared witless.

    Can someone advise quickly please as they may be touch today to arrange discharge.

  2. Geraldine

    Geraldine Registered User

    Oct 17, 2003
    No expert here but don't let them discharge plan her without a proper discahrge plan nad care at home in place. Would it be possible for District Nurses to visit and inject the drugs. When my Dad was at home with cancer the nurses came 3 times daily the inject the morphine. Is there a possible of an interim Nursing Home placement until the infection is over?

    You must be adamant and say you will not accept her home with a drip until adequate Nursing at home is in place. Ask them what you do if she pulls it out - hardly to be unexpected with Dementia patients I would think!

    If you can sit down and write a list of What if questions and do not bufgde until you are happy that they have allayed all your fears

    Good Luck

  3. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks Geraldine.

    It's the pulling out of the needle that is my main concern.

    I have spoken to the hosp and they are hmming and hahing about it.

    One said there is a nurse at the hosp whom teaches people to do it but she is away at the moment. So if she is sent out it will have to be a district nurse as I am not going to take responsibility for injecting drugs into a vien. They said they could bandage the needle but she has pulled it out before with the bandage too.

    This is another nightmare.

    There is no care plan here at all just me and my 78 year old dad! And believe it or not we do have a care manager whom I was informed this morning left a week ago for promotion. No one from SS or CPN has informed me of this!

    Caring just becomes more comical.
  4. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    dont let them do this!

    Hi there,

    I'm in the middle of rushing around so I'll make this quick. My mum was in hospital recently too, and the AD ment she couldnt understand why she had to keep the IV in and just pulled it out cause it was hurting. I said there was no way I would accept early discharge as it was too much for me. I said I would decline to care fo her if they were to send her out in this condition, that i couldnt and wouldnt cope. Of course they never put me in the situation where i had to do this, and mum was allowed to stay till oral antibiotics could be given in stead.

    Stand your ground.

    Also the iv is a small plastic tube, not a needle. and is unlikely to cause any damage if she rips it out. All that would happen is brusing and maybe a little bit of blood. Its the discomfort of having it replaced over again thats the trouble.
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    That's true Julieanne, I have had to hold her down on 2 occasions to let them put it back in again. It is very traumatic for both her and I but I would rather it was me than some unsympathetic stranger as one doctor tried to refuse her treatment on the grounds that she was agressive and abusive. This consisted of her shouting "No Please don't" (Very insulting!)

    His superior then told him outside the curtain where I stood. You can refuse her treatment but you have to understand the woman has Alz and doesn't know why you are hurting her.

    The line was then put in but I was disgusted by the doctors's attitude and asked for the "Aggressive and verbally abusive" label to be taken off her notes as I saw them lying there. I don't know if this was ever done.

    Alzheimer's patients in hospitals are a nightmare, no one really wants to know.
  6. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Magic

    it is sad that hospitals, doctors and nurses generally have not a clue about dementia patients and seek to ditch them asap.

    This is partly because they spoil their performance figures by bed blocking; because they simply take too much caring for and nursing; because few if any of the professionals have ever done any caring for a demantia patient [by that I mean 24 hours let alone 24/7]. It helps that relatives who are carers put their relative's health above their own in trying to make sure they are best cared for, and will accept them back before they are truly ready for it [which also saves the hospital a lot of money].

    I suggest you listen to Julianne. At this moment, Mum is not really your responsibility [though we know that can never be true for the carer] - the hospital is responsible and should be made to do its job.
  7. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thank you for all your replies.

    They are going to hold on to Monday before they discharge her, that's what I was told but that could all change tomorrow. You know what hospitals are like when they want that bed.

    No one seems sure as to what the discharge plan will be, but I will not be rushed into giving care I'm not qualified to give with a hurried phone call from the hospital.

    Also the GP whose praises I am always singing, has tired of mum and her uncurable Alz, she is no longer returning my calls. How quickly support disappears with this illness.

    The family can't wait to get mum back home to me as visiting her on the other side of town soon became tiresome.

    Feeling so tired, fed up and disillusioned tonight.
  8. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    Sorry to hear your fealing so low. Its devistating to hear that people have been so unsupportive.

    I had all this with mum when she was in hospital, and its disgusting that medical staff in hospitals just dont have a clue about how to deal with these patients. Patience and enlightenment is all thats needed. It should be drummed in to every single person who works in the medical field.

    I'll be thinking of you
  9. Chris

    Chris Registered User

    May 20, 2003
    Chat - not a solution on Intermediate Care

    Sorry Magic - this isnt goign to help you - but hard as it is its good if we have half an eye out for those carers coming on behind us - and do what we can so that they dont suffer what we have.

    INTERMEDIATE CARE is the answer here. WHAT WE WANT is a few Intermediate Care beds a the disposal of every hospital. This prevents bed blocking and can prevetn hosptital admissions too. Its were peopel can go when still needing some medical, nursign care & not ready t returm home & there is a question mark over whether they will be well enoughto returm to own home.

    In these units the person may receive reablement or rehab. - in hospital the environment makes anyone feel less able - dementia must make this even worse. So in Intermediate Carer unit there may be some 'recovery' of previous skils and well being . or it may be just athe time needed to come off a drip etc - anything where intensive nursign does not need the actual hospital environment or equipment. it has been proved to work very well for peopel - but htere is a reluctance to fund it - Why? because all the budgets are separate ... Ugghh! Bring back the DHSS !!

    Lets keep saying - we need specialised Dementia Intermediate Care . There now ! Ive bored myself with this !!!!!! Off to Tai Chi.

  10. Chesca

    Chesca Guest

    Bxxxxxy Hell fire, Magic, they're at it again?

    Whether or not the hospital needs the bed is of no never mind. For whom, exactly? At the moment your Mum needs the bed. To where exactly do they intend to discharge the dear Mum? They have a duty to ensure her continuing care with the support of professional staff, if they can't do it they'll just have to accept they have a 'blocked' bed! Life's a bitch. More of the inter-departmental fighting? They'll blame social services but they're just as bad. A result of governments not taking into account the human element of illness, only tick boxes. Do not accept Mum home until the accepted level of care is in place. Don't, Magic. You've been here before and now you have the strongest card in your game, play it. If anything happens to Mum while you are trying to perform the job of a trained professional, who's answerable then? If the job requires only that an untrained carer does it, one has to ask the question why are we wasting vast amounts of money on providing positions for outreach nursing staff? Pass me a tube, I can plunge a sink! They make me sick - Hold that bed!

    Stand fast, you know you can. Wear the highest shoes you have and dig those heels deep into the softest mud you can find. The longer the GP ignores the calls the longer the situation will continue, tell that to the hospital. Let them fight it out amongst themselves. But under no circumstances allow Mum home just to suit a government statistic. Everything should be, and has to be, done in the long-term best interests of Mum (not to mention your sanity). She's too precious for that and so are you and your wellbeing.

  11. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks Ches, will use some of your words if you don't mind to argue.

    Sitting here crying buckets. Probably feeling a bit sorry for myself. I miss wee mummy. When I went to see her yesterday her mouth is covered in cuts and inside is full of blisters, she can't even get her dentures in. She looks in such pain and is so tiny in her wee size 8 leopard skin nightie, she's like a pint sized Bette Lynch. (She always knows that leopard skin print one is hers. The nightie sounds horrid, but it really is all done in the best possible taste.)

    What's really getting me down is dad.

    He has always been so optimistic and steady but now he is anxious and has plunged into a depression. We wander around the house not speaking much, overnight he is simply not the dad I knew. I feel like I have lost both parents and they are still alive. I resent my siblings for being able to step away from all of this and not see the horrible stuff that goes on here on a daily basis. I resent the God that I used to trust and I watch mum mutter her prayers daily and wonder how she still has such faith in the midst of all this madness. I feel utterly, utterly lost and alone and scared and I'm not afraid to admit it. I'm no saint, I'm no martyr. I'm terrified and lonely in a crowded room. I feel like I'm crumbling a little everyday. And still I hang on by my fingernails and wonder if happiness will ever wander in through these doors again.

    Dear God I sound like Scarlett O'Hara!
  12. bjthink

    bjthink Guest

    I can only echo Chesca's point. You have to do only what you can - to love. You're not a professional, and a professional is needed in this case, to do the NHS job. Please, please, don't even attempt to go down that route, and don't take any medical responsibility. It's not your shout, and it's not your job.
    You have to let them carry the can, It's their job to ensure that your mum is safe, medically, IT'S NOT YOURS.
    Please don't let the NHS exploit your love and your life.
    We all have an entitlement to care at the point of need, for the whole of our lives. Your mother, and all of us, have paid for this. It's not a gift, it's an insurance policy.
    All of us pay throughout our lives for insurance against illness. Your mother deserves what she has paid for. Let her have it, and insist that she has the full measure of what she has insured herself against.
    Please - do not go gentle into that good night.
    Rage, for her rights.
  13. Chesca

    Chesca Guest

    Darlng Magic! use the whole script if it helps! If I could get a flight over early enough I'd say them for you!

    Stop berating yourself for, how are you callin' it, feeling sorry for yourself? It's nothing to do with self-pity, it's absolute out and out stress; you're trying to deal with a situation from the emotional - because you love Mum, in the normal - against the practical, tick-boxing computer age which was born without a heart. I could cry for you. Am certainly angry enough for you, shame it doesn't shift SS mountains.

    A pint sized Bette Lynch? not a bad sex kitten to be, if you ask me: Grit, determination and a sassy attitude? sounds familiar? Wear your leopard skin when you are on the phone, brings the beast out in you (or so I'm told) and charge it to tax as expenses!

    Scarlett wouldn't have given a wossname, until a week next Popeye or whatever...........perhaps she had a point, but you're made the way you are a maid! Actually, that's a point! Assume Scarlett's take on things, tomorrow is another day, when that which passes for a professional support system starts mithering - tell 'em 'we'll talk tomorrow'!

    Happiness through the door will come, not in the way you anticipate - it could be any awld thing. How's the milkman looking these days? Sorry! just a thought.

    Your Poor Dad. The lost soul. Lost the soul who kept it all together for him? I've got a wonderful one of them too. He's lonely, yes he is, but he's not lonely for any of us, really. I'm up and down to his house during the week, every night, 10 mins away (7 if the J is driving) because I'm worried about him being lonely - but have to tell you after about 30 minutes of fussing about he's not interested in anybody's company - we can't replace 60 years of companionship and anyway, in his opinion, we don't have an opinion - because we're women and what do we know? Actually a lot. He paid to educate us but you have to keep your mouth shout although I do have poison darts fired from the eyes, and we part company with a tacit understanding. Next day he phones to apologise for being such a pain in the scotch side of the axxe.

    Your glorious Daddy may just need a little help from the doctor, too, he's depressed understandably, but I wish you much luck in suggesting the possibility. - I'm still working on it. But in saying that, I have the luxury of not having to live with Dad 24 hours each day. You can only take on so much of others' angst, they have to deal with it in their own way. At the moment you have too much of your own and too much responsibllity being planted heavily on your shoulders, as ever.

    Dig the heels in Magic, regardless. Something positive can come from this.

    Lots of love, you
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Dear Magic, they really are the pits arn't they! You stick to your guns, insist she stays in hospital while she needs an IV. It is not fair on you and your Dad to be expected to cope with that. The advice you have already received sums it up, but I just wanted to add my support and say I'm thinking of you, love She. XX
  15. Chesca

    Chesca Guest

    Dear BJ! Exactly! We all have a right to care at the point of need! Paid for by our contributions into that system. Now is the time to reinforce the issue - by putting pressure on nursing staff seems to me to be the only way back to Government - let's not make the box ticking so easy, and thereby feed back to government that which it can't ignore. Dreams are made of this..............

    For how long, when it suited goverment departments(normally when the NHS required psychiatric nurses) were we educated via ad campaigns, to accept that just because there was no 'plaster' didn't mean there was no illness - the hidden mental illness. Goalposts on casters yet again.

  16. Sheila

    Sheila Registered User

    Oct 23, 2003
    West Sussex
    Totally agree Ches, love She. XX
  17. JulianneGreen

    JulianneGreen Registered User

    Dec 9, 2004
    Here here!!!!!!!!!!

    All I can say Is its all been said. Dont you let them trample on you or the ones you love. Stand up and be counted, and dont worry about how you do it and say it. They certainly dont seem to be worried about how they are treating you.

    They are taking you for granted, your mum needs a bed and you need support until she is well enough to return home in a manageable state.

    Who knows, make enough of an impact and not only will your situation be helped but the importance of understanding of AD may be incresingly known in this hospital.

    And may i say how spot on i feal everyones advice has been. Thank god for TP
  18. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Thanks guys for keeping my spirits up.

    Ches you're right, dad is lonely for mum, 56 years of marriage and he still adores her. There's no way he'll see a doc for depression. I have never even managed to get him to take a paracetamol for a headache!

    This really is all too much to bear for one person. Spoke to the Alz helpline today and the lady was pretty concerned that I'm struggling alone, someone is being put in touch to have a chat with me. Thank God for Alz Society! Didn't even know this was possible. Was also advised to get a written copy of mum's care plan. Have never seen one to this day! Maybe something good will come of all this. Feel awful about not wanting to take mum home if she is released with IV but would feel much worse if something happens here that could have easily been prevented in hosp. They even did a heart trace this morning they were so concerned at her chest clutching and distress. Little do they know this is what I cope with every morning in life washing and dressing her. I have to gage each day if it's a poss heart attack or an anxiety attack. Ain't life a gas?

    Thanks for listening guys.
  19. storm

    storm Registered User

    Aug 10, 2004
    Dear Magic, Just adding my pennies worth if i was in your position there is no way i would take mum home with a line in ,the staff must know what dementia patients are like the line would be out more times than in it will serve your mum better to stay put so stand your ground girl and call us for back up if needed.I will get my white charger out and be over there in a shot.Storm
  20. Chris

    Chris Registered User

    May 20, 2003
    Just wondering if our recent experience - kind of the other way round will add stength to the debate. -

    Mum was very poorly - I mean as poorly as it gets & the choice on offer was - for Mum to stay in the nursing and be kept comfortable ie palliative care (although no one said that) OR be moved to hospital where she could be given a drip etc etc and hydrated etc

    All things considered the GP and care home staff thought it best if Mum stayed at the home - I REALLY DONT WANT TO DEBATE IF WE DID THE RIGHT THING - (they mentioned this to me & seemed to be hoping I wouldnt object) every situation is different & unless you are in it - I dont believe it is right to enter into judgemental discussions.

    The relevant point here is - fitting a drip and maintaining it in a nursing home (with one nurse on duty 24 hours a day) seems to have been out of the question - so how can a hospital consider sending patient to their own home with one ?

    PS The Alzheimers Society is looking inot end of life issues for people who have dementia - wish theyd done that before we had to face that in November last, Heigh Ho - maybe our experience will help develop services in the future. Perhaps its a Thread we can have in the future - needs to be separate - as you only need to think about htat when the time is right - believe me - you know what I'm going to say - Yeah - Day by Day !!!!

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