1. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Evening all

    Despite a few glitches - Dad appears to have been making reasonable progress in the assessment unit and new medication appears to be regulating his sleeping patterns & controlling his anxiety during the day. His plaster cast came off a week ago - but sadly his mobility is not as good as it was prior to the falls he had in the assessment unit. Even with his leg in a full plaster - he was confident at home walking with hisframe. On a positive note the physio appears to be pleased with his progress & has advised that it will be 3 to 4 weeks (post plaster removal) before we know much mobility Dad is likely to regain.

    Mum & I were asked to attend a meeting with the Doctor today. To cut a very long story short - there were 7 "health professionals" in this meeting (only 1 did any talking so I guess the others were there purely for decoration !)

    The Doctor advised the meeting was to establish long terms plans for Dad (back home or Nursing home) and to establish Dad's "re-suss status".

    I told the Doctor that the latter would be something Mum & I would need to discuss in private and not in front of a room full of strangers - I still can't believe how insentative he was - no delicate phrasing - no softening pre-ample - just straight in there & expected an answer there & then!

    Unfortunately neither our CPN or Social Worker were able to attend - although they were invited but they both advised me they thought it was too early for a "planning meeting" to discuss Dad's next move.

    Just in case though....ahead of the meeting I prepared a list of our areas of concern where we need to be clearer on Dad's progress before any such decision can be made & I was determined that Mum should not be bulldozed into making this decision today. Dad has only been on new med for 2 weeks..... - so it's still early days...Will probably post more on this decision in the next few days - but just wanted to get "today's meeting" off my chest!

    My Mum is 82 and registered blind & I cannot imagine how she would have coped with such a meeting without my support. 7 "health professionals" in one room must seem very intimidating to an older person.

    Here's hoping for a better day tomorrow - thanks for "listening"

    Gill x
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,652
    Kent
    Good for you, Gill, standing up for your mother and standing up for yourself.

    These `health professionals` who have not yet had the sensitivity to realize just how intimidating they are to those less articulate than yourself, are still in the dark ages.

    Is this their idea of partnership?
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    I agree. It's particularly irritating for these people to go to these meeting "mob handed" as it were, when it sometimes seems nigh on impossible to find even one person if you have a specific concern.

    I am so sorry that they were so insensitive: I wish I could preface that statement with "I can't believe" but unfortunately I can. I DO find it hard to believe that they wouldn't have informed the SW or the CPN about the supposed reason for the meeting. Surely they should be involved in any planning for your father?

    And as for the "re-suss status" - well words fail me.

    Best wishes

    Jennifer
     
  4. SteveS

    SteveS Registered User

    Jun 20, 2007
    41
    Altrincham, cheshire
    I really feel for you - we were left in the dark re my Dad.

    Called for a professionals meeting to discuss and assess for me and my mums benefit, they went ahead and made decisions without us.

    I complained - got the soft soap.

    They decided that Dad would be better off in a home - very craftily manipulated us into thinking he was raucous at night, never setteld, would be too much of a burden (not quite but will be a load), and then got my Mum to thinking that she should really let him go into one.

    The SW was quick off the mark with her monetary assessment form. Left it by Dads locker on the ward last week, and left a message opn my mobile today chasing it! she'll have to wait in our time, there's a lot to take in, especially with the lack of homes in our area that are willing to be funded by the local council, and we have to visit them to decide.

    I'm inclined to think that we are now costing the NHS money, and they are wanting to get rid......we're all not too happy with the care in Hospital, but can't rush such a sensitive decision, nor will be rushed into deciding without proper planning.

    Keep you end up - don't give in, and complain in no uncertain words! - consultants are paid enough to take the rough as well........


    Take care

    Steve
     
  5. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    A better day today

    Hi everyone

    Thanks for the supportive messages after yesterday's rather sad posting. Sorry if it was a bit of a "rant" but I really needed the moral support after yesterday's meeting...

    I'm so pleased to report that Dad was in really good form when we visited this afternoon - he was alert, smiling & cheerful, held totally lucid conversations all afternoon & called my Mum by her name as soon as she came in saying "there's my Marion" - what a boost for her & so badly needed after yesterday - when the Doctor was negative, negative, negative!

    I know the doctors must get "feed-back" from the staff on the ward - but am I the only person who gets the impression that the Doctors base their opinions on a "snapshot in time" on the (rare) occasions that they actually get to see the patient? Total overkill of medics in attendance yesterday for the meeting - but not one in sight today - when I wanted to shout "Look -this is how good my Dad can still be. I'm not giving up on him & I don't want you to give up on him either!!!!"

    Decision day is set now for 24th July - when we will meet with the Consultant (no doubt accompanied by various doctors & numerous "hangers-on") & they will want to know whether Dad is coming home or "whether the time has come for him to go into a nursing home". At least I have stalled them for another 2 weeks - to see what further progress Dad can make in that time - mentally & mobility. In the meantime I have arranged for private meetings at home with the CPN & the Social Worker - who we know & trust so we can discuss all angles without Mum being intimidated by a roomful of strangers.

    I'm really hoping that Dad will have stabilised sufficiently to come home - with increased support & care package to be put in place, but the final decision has to be Mum's.

    I'm just so cross that the "medical professionals" tried to railroad her yesterday into making a decision far too early. I think had she been on her own at the meeting yesterday - she would have gone for the "nursing option" as it was all "gloom & doom" from the Dr & that was definitely the direction they were steering her in. At least that I have managed to buy us some time & we will now get a chance to discuss all options fully with the CPN & SW - so that when it comes to the meeting on 24th - Mum will at least be in the position of making an informed choice. I have also booked both of them in advance for this crucial meeting as the SW had not been advised & we definitely want them to be there "on our side".

    Keep your fingers crossed for us. I still believe that Dad still has sufficient cognitive function to enjoy a better quality of life at home than he would in a Nursing Home at this moment in time. I'm not burying my head in the sand - I am fully aware that in the future - if there comes a time that Dad no longer recognises us, cannot hold a conversation & doesn't know where he is then a nursing home will be the best option for all.

    Will let you know how we get on - thanks for "being there" - TP provides such a good stress relief at these difficult times & it's good to "talk" to those who I know understand.....

    Take Care

    Gill x
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gill

    I'm so glad your dad was better today. It makes yesterday's meeting all the more unbelievable.

    I hope the improvement continues, and you get a suitable care package set up at the next meeting to allow your dad to be cared for at home. If he still recognises people, and can carry on a conversation, I don't see why not.

    All the best,

    Love,
     
  7. SteveS

    SteveS Registered User

    Jun 20, 2007
    41
    Altrincham, cheshire
     
  8. cynron

    cynron Registered User

    Sep 26, 2005
    429
    east sussex
    My husband was also considered ready by the hospital to go into a home. I said i wanted to try to keep him with me a little longer . Well i did and he had a wonderful summer last year but in the autumn he began to deteriate and he went into the first of three homes and he passed away in April. We did a lot of outings last summer bar be que, Cream teas on village green . Coach outing with our club. Village party with the ladies dancing with him. Birthday tea in the garden. I am so pleased i went with my instincts. We did have a lovely last summer.

    Cynthia x x
     
  9. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Another "Better Day"

    Evening everyone

    Thanks again for the supportive messages & I'm pleased to report another good visit this afternoon (that's 2 in a row now!)

    Managed to get Dad to walk with his frame quite a long way today - from outisde (they have a lovely garden at the assessment unit) - back through the day room & along the corridor to the dining room in time for tea. Was there a Doctor around to witness this "marathon stroll" of Dad's? Was there heck! I was so proud of him.

    Dad needs time to "stabilise" on his new meds and to "mobilise" as good as he can - after 8 weeks in a full plaster cast. Mum needs time to see what progress he can make and hopefully to alleviate some of that very understandable fear that if he comes back home it might "all go horribly wrong" & that she will be left to deal with it all. I love both my parents & want what is best for them both & will continue to support them all I can. Therefore rest assured that as a family......

    WE WILL NOT BE RUSHED INTO MAKING THIS BIG DECISION TOO SOON!

    Sadly it's not all good news (is it ever? We know to expect extreme highs & lows & very much take each day as it comes.) Dad apparently had another major "panic attack" this morning and his BP dipped very low during this episode. We refer to them as panic attacks - because we don't really know how else to describe them. He gets very aggitated, often pale & clammy, his whole body shakes & he appears unable to communicate how he is feeling.

    The assessment centre staff are still unable to identify a trigger for these episodes - which can last from 10 minutes up to a couple of hours. When he "goes into one" - he is unable to vocalise what is wrong or whether he is in any pain. I wonder if anyone has experienced similar "episodes" ? Any words of wisdom / possible causes would be welcomed.

    Love

    Gill x
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Yes! Hand up here. My mother had several episodes of low BP the last time she was in hospital (and this is a woman who has high BP normally). I'm sorry to say, though we never got an adequate reason for it, and they eventually went away. There was no medication change or anything. So yes, I've seen it but no, I don't have an answer.

    Jennifer
     
  11. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Hi Gill

    Interested (if somewhat disturbed) to read of your recent experiences, and WELL DONE for standing your ground & listening to your instincts.

    May I make a suggestion? Keep a detailed daily diary of your Dad's condition over the next 2 - 3 weeks; not just how far & how well he can walk now, but also his moods, anxiety, sleep patterns and any reactions to changes of medication, 'bad' reactions as well as good. Try to be as objective as possible, and include your Mum's observations (and those of any other visitors whose opinions you value) and any feedback you get from the nursing staff.

    Do it NOW, and backtrack to make notes over the past couple of weeks as well as those to come. When the meeting on 24th July comes around, have your notes available (possibly with a copy to give to the consultant) for reference to support your views. I know only too well how easy it is to forget something you wanted to say at such 'assessment' interviews.

    :) Good luck and stay strong
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    yes, I agree absolutely
     
  13. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Smart idea

    Thanks Lynn

    I have taken our "agenda" to all 3 "ward round meetings" we have attended so far & given a copy to the Doctor - so that they have a record of things we wanted to discuss & the questions we needed answers to. The real reason for doing so was a fear that my mind would go completely "blank" during these meetings!

    But I must admit that I hadn't thought of keeping a diary of Dad's progress (the ups and the downs) - that's a really good idea. So the next time I meet with the "negative, negative, negative Doctor" - I can produce this and say "well what about this date, or look what he did on this date"?

    Dad's been through so much recently - aged 91, he has suffered from AZ for 14 years and sadly experienced three major medical traumas in the last 3 months which has escalated his condition quite rapidly. He's a real fighter though (I wonder if that's where I get it from?????!) & I am so proud of him for doing as well as he is doing (against all odds) so every small achievement he makes at the moment is a major victory in my eyes.

    This site is becoming a bit of a "life-line" & I've been so impressed & moved by the genuine support which comes through.

    Thanks to you all for "just being there" .....

    Gill x
     
  14. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Good Result

    Good evening

    Pleased to report that our "D Day" meeting with the Consultant today went well.

    The Consultant was pleased with Dad's overall good progress. His sleep patterns & anxiety appear much improved (due to a combination of new medication) and his mobility (as outlined in the "home visit" thread) continues to improve too. So - I'm delighted that Dad will be able to return home when he is discharged from the assessment unit.

    I have to say that our CPN, SW, the Physio & the OT (who all attended the meeting today) have been wonderfully supportive in helping Mum make an informed choice. We have been very lucky to have such good people "on our side" and I'm grateful too that we had the time-scale to discuss all options fully with all the relevant people, rather than Mum being rushed into a decision too early.

    Dad's actual discharge date will depend on the increased care package being in place & various items being fitted & installed by the OT department, but we hope Dad will be back home within a couple of weeks.

    We know there will be difficult times ahead - and things are not going to be easy - but I'm so pleased with the outcome & feel that by taking this decision we are not "closing any avenues" for Dad at this stage.

    Thanks to all for the moral support to far & just wanted to share this bit of good news with you tonight.

    Love

    Gill x
     
  15. lovdn2

    lovdn2 Registered User

    Jul 24, 2007
    25

    Your Dad is a lucky man to have you and your Mum.

    It's sad that we have to fight all the way to make sure we get the best care available and it seems you have done just that.

    Well done, I know what you mean about the site being a lifeline, it's mine too.

    Hope everything continues to go well for you.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Gill

    That's great news.

    No, it's not going easy, but you are such a lovely, supportive daughter that I'm sure you'll make it work for as long as possible.

    Keep in touch, and let us know how it goes.

    Love,
     
  17. gill@anchorage5

    gill@anchorage5 Registered User

    Apr 29, 2007
    211
    Southampton
    Thanks

    Thank you for you lovely comments & support - it means such a lot.

    Things are moving quite fast now - handrails being fitted to the stairs on Friday & meeting with SW on Monday to get the care package in place, so we could be looking at getting Dad home quite soon.

    Trying know to get bits & pieces sorted out here at home before I move back in with Mum & Dad again and I hope to take Mum out for a few "day trips" (weather permitting) while we still have the "freedom" to do so. (I must never forget that Mum needs "spoiling" too!)

    Yes I know it's not going to be easy - but I'm so pleased that we will be able to have Dad home again - to care for him as best we can for as long as we can...

    Thanks for being there for us....

    Love

    Gill x
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,652
    Kent
    All the best Gill, you really deserve it.

    Love xx
     
  19. SteveS

    SteveS Registered User

    Jun 20, 2007
    41
    Altrincham, cheshire
    Best wishes from me as well - you are a special person, your parents are very fortunate.:)

    Good luck

    Steve
     

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