Can we kidnap our Mum out of the hospital ?

Discussion in 'ARCHIVE FORUM: Support discussions' started by germain, Nov 29, 2007.

  1. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello everyone
    Quite an urgent situation this time - and it never ends, does it ! The minute one thing gets sorted out and our stress levels dip a tiny bit then something else happens !

    Our Mumm is back in hospital yet again - just came out a month ago - and had to go to EMI CH. CH is wonderful BUT after 2 days of total refusal of food and drink she had, we think, a TIA.
    (left with weak left side)
    Last night very junior doc asked if we knew she was suffering from malnutrition and dehydration and was doubly incontinent and refuses to open her eyes, speech is garbled etc. DUH - yes - we've been living with it for two years ! Blood tests show something but he's not sure what. SO THEY GAVE HER AN ENEMA ! By the time we arrived to visit she'd been without any food or drink for 24 hours - she gulped down a carton of Ensure Plus and a whole sippy cup of water with spectacular results !
    ( could have been the enema but also the severe diarrhoea they released her with a month ago and has never really cleared )
    Staff nurse was quite pushy and gave us choice of catheter (why ?) and naso gastric tube or PEG. said no to all 3 and made to feel like mass murderers ! We also had the old chestnut - of course it my be a UTI but as she's incontinent we can't get a sample !

    Visited again tonite to find chart saying she had weetabix for breakfast, two sandwiches for lunch etc - all this while lying flat on her back !!! Her nurse then said she hadn't woken all day !! Hubby and I sat quietly while the evening meal trolley passed by, sat another 15 minutes just to make sure and then asked what Mum was having "Oh- we forgot to order her anything !!!" So this time we fed her two Ensure cartons and half a tub of ice cream - again with spectacular results !

    Now saying potassium is low - well it would be as hospital took her off her supplement last visit - and get this - no reminyl or fludrocortisone given for last two days since she arrived as ward are out of stock !

    We're going to try to see her consultant tomorrow - but failing this and with no treatment being offered or food or drink to speak of, can we just take her home (and it will be TO a place of safety - the CH - and away from the risk factor - the hospital)

    Advice/opinions/willing fists/ sedatives (for me) sought yet again.
    regards & apologies pals for yet another ranting session
    Germain
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi germain, I'm not surprised you're ranting. It's absolutely disgraceful that people should be neglected in this way in hospital.

    I hope your meeting with the consultant produces some results -- if not, try PALS.

    I'd be doubtful if the home would accept your mum if she hadn't been discharged. I suspect if they did, they'd be accepting liability if things went wrong. I'd ask them about this before saying anything.

    Good luck tomorrow, and let us know how it goes.

    Love,
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,732
    Kent
    Dear Germain,

    I hope the consultant keeps the appointment and , although it want solve your immediate problem, I do hope you will write a formal letter of complaint to all concerned.

    Reports of bad practice and neglect are going from bad to worse.

    I can only hope you get some satisfaction tomorrow. You certainly deserve an explanation.

    Please post an update.

    Love xx
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Dear Germain

    Talk about taking me back - this reminded me horribly of my own mother's hospital stays. Those record sheets are a joke - Mummy was admitted following a fall, yet her falls assessment said she was in "no risk of falls"! The feeding record was never accurate - even if food was delivered there was no one there (except for me) to make usre that she'd actually eaten any of it, and since visitors weren't allowed on the ward at mealtimes, I ended up bringing in food that she might like and to hell with the record keeping.

    As Hazel says, I can't imagine that the CH would take her back either without her being formally discharged, or in my experience, another assessment to make sure they can still supply her care needs.

    However, when it came to getting someone discharged I did find making a formal request to speak to the consultant via the secretary was a sure fire way to get someone discharged. Probably coincidence but each and every time I asked for this, she was discharged the following day. I did find PALS quite useful though,

    P.S. The last time my mother was in hospital they didn't give her her blood pressure meds (or any of her many other meds) because: "It was a holiday and the pharmacy was closed because the assigned pharmacist didn't come into work". God give me (and more importantly you) strength.

    Love
     
  5. Mary11

    Mary11 Registered User

    Nov 25, 2007
    18
    Hi Germain,

    I notice that you say your mum was discharged a month ago with severe diarrhoea....have they ever tested your mum for Clostridium Difficile (c-diff)?

    Also if you get no joy with PALS go directly to the Complaints Manager.

    Good luck
    Mary11
     
  6. germain

    germain Registered User

    Jul 7, 2007
    342
    Hello all - an update -

    The good news : we saw the consultant as promised, he agreed to release Mum tomorrow. Meds had arrived and been given and Mum is perking up a tiny bit and had been fed. The consultant was excellent answering our questions - and honesty expressed his opinions on prognosis and future care. He agreed artificial feeding etc was not called for ,

    The bad news : the CH can't have her back until Monday at the earliest as they have a bug ! Even a couple of staff have gone down with it and they are in self imposed quarantine.

    The very surprising news : the scan done in October showed old evidence of stroke damage !! We were never told this ! ( a nurse had given us scan results ) So its NOT a first TIA at all and has it been more VD than AD all along ? In which case should the treatment have been different ?
    have to say Mum was fine for 3 years with very slow deterioration but since April this year its been totally dramatic.

    Will update if she gets home on monday
    Thanks a million times for all the support.

    regards
    germain
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    I can't remember Germain - has your mother any of the warning diseases that can lead to stroke: high blood pressure, heart condition, clotting disorders? The reason that people with vascular dementia aren't put on these drugs in the UK is not that they may not work, because studies have shown that they do, but that some studies have shown an increase rish of heart attacks and strokes. So you're damned if you do, damned if you don't. Apart from monitoring those underlying diseases and treating them, there is no specifc treatment for vascular dementia. If you were in a different country, your mother might have been placed on reminyl as a matter of course even with a past stroke, but not in the UK.
     
  8. Mary11

    Mary11 Registered User

    Nov 25, 2007
    18
    Sorry about this, but is it usual for carer's of patients suffering from Alzheimer's etc. to attribute all of their conditions to AD (hope got abb right). Sorry but there are lots of people on this forum that dont answer directly...ie. Germain, has your mum ever tested positive for c-diff and have you ever asked this question....??? You have quoted that she has had severe diarrhoea??Have you not?? But you never answered???
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Well you know, Mary, it's sometimes difficult to remember on threads such as this what questions have been asked let alone remember whether you've answered them.
     
  10. germain

    germain Registered User

    Jul 7, 2007
    342
    Hi Jennifer and Mary -
    We've found all the way that every single symptom has been responded to by hospital staff - usually registrars & nurses "well, its her AD, you know"

    She's been tested for C.Diff a couple of times and each time its come back clear so we think its the amount of enemas and laxatives that have been pumped in every time she's been to the hospital (why they think constant laxatives are required for the elderly I just don't know !)

    Re the Reminyl - she's been on this for about 3 years now - intial miracle improvement but her scores dropped dramtically this year and the dosage was upped from the 8 mg 2x to 12 mg 2 x. Were you saying its possible that this has affected her vascular state - she has also developed atrial fibrillation and the consultant told us that during these attacks clots can form and break off. On Digoxin & low dose aspirin etc for this but BP has always been low.

    Mary - you may not have seen previous posts where I told all about the Prozac nightmare - had a very severe reaction but was then mistakenly given it via her medipac for another 4 months -
    - we've been suspicious all along that this may have caused the deterioration but really who knows - could be just total co-incidence.

    Apologies for the medical nature of the post but I was very interested in the Reminyl and vascular aspect raised.

    All the best
    Germain
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    To be honest, I don't know. I DO know that a couple of years ago there were reports that there was an increased rate of death from non AD causes in patients taking reminyl as opposed to a matched group of patients not taking reminyl. I'll see if I can find study references and then post them. I'm not sure that they came to any conclusions about why the deaths occurred or if the reminyl actually caused damage.

    Having said that, though, other studies have found that people with vascular dementia DO reap cognitive benefits from taking reminyl. If it hadn't been for the "increased death" studies I would have pushed for my mother to have received it privately but under the circumstances I decided to save my energy for battles I had a hope of winning. My mother had atrial fibrillation AND high blood pressure, so a double wammy on the stroke front. I think atrial fibrillation is pretty common the older you get - the heart is a muscle like any other and it simply gets weaker (I think - I don't KNOW). But you're correct - with AF blood pools in the heart intermittently and without blood thinners can clot and thats when the damage occurs.

    My point was, if I had one, that 1) I wouldn't be surprised if they took her off the reminyl and 2) if they had done a cat scan right back at the beginning of this and seen stroke damage they may have decided she had VID rather than AD - the diagnostic process is more one of exclusion I think.
     
  12. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Update:

    OK I've been doing some research. I'm afraid I have mislead you - it was Aricept that was mentioned in the most recent studies, and even that might be a statistical anomaly - there was an exceptional low rate of death in the group NOT receiving the aricept, rather than a high rate of death in the aricept group. However, reminyl was was tested before that and in one study, showed a similar increased risk of death. However, and this is important, I cannot find that that risk has been shown in any other study to date and from what I've found, was at any rate greatest in the first 6 months of administration. And it should be noted - reminyl is fairly commonly prescribed for vascular dementia in non-uk patients. Something you might want to think about though - a fairly common side-effect of reminyl is diarrhea. I don't suppose this coincided with your mother's increased dose did it?
     
  13. germain

    germain Registered User

    Jul 7, 2007
    342
    Hi Jennifer
    and thanks for your response and research.

    No - the diarrhoea only started a week after her hospital admission at the end of September and has continued on and off since then - her staff nurse says its not diarr - just loose motions ! - but to any non-medi person its quite severe diarrhoea - (and I shudder to think what the nurse thinks IS actual diarrhoea)
    Going to visit now as she will need feeding and no-one else seems to offer !
    regards
    Germain
     
  14. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Dear germain,not wanting to cause alarm bells ringin.The diarrohea?has there been a test done for C Diff?Am only asking because we had a new resident from hospital.diorrohea rife.Tested and C diff the diagnosis.
    love elaine
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,419
    Elaine - see Germain's post above (# 10 I think).
     
  16. Mary11

    Mary11 Registered User

    Nov 25, 2007
    18
    Hi Germain,

    Has your mum received anti-biotics whilst she has been in hospital?

    Potassium is the most prolific electrolyte in the body and your mum's may be low due to the diarrhoea. Here is a link to show the effects of low potassium http://www.ehow.com/how_13187_understand-effects-low.html

    Mary
     
  17. germain

    germain Registered User

    Jul 7, 2007
    342
    Hi Mary

    Our Mum hasn't had anti- biotics this time - last course was around beg. October. Hoever, potassium is very low and she has been given a drip infusion.

    A bit cross about potassium level as she was placed on a potassium supplement by her GP in May but taken off it by the hospital late September ! Funny thing tho' - all her life she's adored bananas (good source I think) - now of course she won't touch them ( or any other solid food for that matter !)

    Link was good - thanks

    Regards
    Germain
     

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