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Want mum home from hospital

Discussion in 'End of life care' started by Chaucer 1931, Jan 3, 2016.

  1. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    My mum is in hospital on an orthopaedic ward after falling and dislocating her shoulder last week,she was very agitated due to an underlying,ongoing uti,that her dr had stepped back from treating with antibiotics as the plan was to keep her comfortable and pain free at home..

    However,due to her fall,I didn't want to leave her in such pain,and as the gp on duty,didn't want to come out but told me to call the 111 service,mum was taken to casualty,where they tried to relocate her shoulder while she had gas and air,but failed to and decided that it was best done under general anaesthetic..
    The Drs tested mums blood and urine,and indeed,she did have a raging infection which they decided to treat with iv antibiotics..

    She's very very frail,barely awake and is slipping away,they took her off iv fluids yesterday and she has been asleep all day today...

    I want her to come home,to slip away and in familiar surroundings,as I know this potentially is it,if not now then very soon,as the antibiotics will have done their work,but she has been existing otherwise on sips here and there and a few spoonfuls of rice pudding..basically everything slowing right down..
    I have met a staff nurse over the weekend,on the ward,who seems hell bent on referring her to rehab and me getting extra help? in looking after mum..who turned around this afternoon and said 'no wonder she's got uti,she's not drinking much!!' And 'we will take her catheter out before she's moved anywhere'. To which I said 'why?' 'Do you not know she has retention??'
    Honestly,the sooner mum can come back home the better...
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    There are two things I could suggest
    One is that our area has a service run by the community team called Home First where people can be nursed at home following a professional referral - you would have to check if you have a similar service in your area.

    If they have the UTI under control and the shoulder is now pain free perhaps you could speak to the senior consultant but definitely higher than the staff nurse, and explain the situation regarding the care plan that you held with your GP and which is the family wishes and ask that she could be transferred home. If you have power of attorney for health and welfare you can explain to them that to keep her in hospital goes against her wishes and the wishes of the family - you can explain that anyway but PoA helps.

    I have to say that I had a very similar problem with my Mother who was admitted via 111 against her wishes and mine because of breathing difficulties and once there the hospital would not transfer her or indeed allow me to transfer her home via a private ambulance because of the 'risks'!!!!!!! I insisted she was moved to a side room and I stayed but it was a tough journey with many difficulties along the way and we would have wished that she was at home. They were not actively treating her.

    If I had to do it again I would a) not have let 111 transfer her and b) once we got to hospital and she was stabilised I would just have insisted and gone ahead - but and it is a big BUT because I didn't go that route I am not sure what difficulties that would bring. There may be others on TP who can better advise - I can only tell you our experience.

    There is just another thought - looking back I'm not sure how well she would have coped with any move - it would have been painful and I had to question my motives. If she had been kept warm and comfortable then I would have been able to look back and say that she was possibly in the best place. However like you we would not have wanted active treatment at all and they put her on 'end of life' - you can discuss this with the consultant - some hospitals will not bring it up and you may need to. I would ask for the involvement of the palliative care nurses - all hospitals have a team they just didn't tell us about it.

    I would prioritise a discussion with the most senior medic you can get hold of tomorrow and work it through together. My thoughts are with you every step of the way.
     
  3. wobbly

    wobbly Registered User

    Feb 14, 2012
    313
    Mid Wales
    do you the health and welfare LPA for your Mum?
     
  4. Ameliasmama

    Ameliasmama Registered User

    Oct 24, 2015
    44
    Fizzie's advise is amazing and the advice I was given only last week. Unfortunately it was too late for my Dad, due to Christmas holidays there were no senior staff to talk too and by the time I'd got the number myself for the palliative care team it was too late.

    I wish you and your mum strength xxx


    Sent from my iPad using Talking Point
     
  5. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    Thank you so much for your replies I'm sorry I haven't replied,I was/is/am in a emotional turmoil still..but my was in hospital right up until yesterday and is here at home now,
    While mum was in hospital,they kept her on off iv fluids most of the time,she was very drowsy and had only taken a few (5 or 6) teaspoons of food over some entire days,other days nothing at all as she refused or was too tired or asleep to eat..

    When she came home yesterday afternoon,she had a few swallows of a cup of tea,(this was around 5pm) and that was that,I changed her pads,made her pillows comfortable and she hasn't woken at all during the night,just been in her room now,she's asleep still.. I'm not going to wake her,if she wakes and wants a drink or any porridge,fine,but if she doesn't,then I'm going to have to accept and respect her choice and back off instead of trying to tempt her to eat/drink..however hard that may be for me to do..
    She's been peaceful,no agitation(yet) or in pain,I'm acutely aware of keeping her pain free and comfortable-I'm keeping her personal care to a minimum,just keeping her toileting needs attended to,so she isn't disturbed by me..

    Maybe she will carry on longer,maybe she feels she can or is allowed to die,now she is back in her own home..
    Im making sure that she is as st ease as any of us would or could ever wish for at the end of our lives..
    I'm being as strong as I can and as long as mum is here,where she always wanted to be and she's loved and looked after that's all the words or mantra that I keep going over in my head now.. My heart is breaking again,but I'm keeping it together until mum passes,this is truly truly so hard,but it is what mum and me wanted for her in the end days..
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Hello Chaucer
    I am so pleased for you both that your Mum is now at home. You are so right that all we want at the end is dignity and peace and to be given permission to move on. You couldn't have done more and I will be thinking of you both xxx Take great care of yourself and take peace and comfort for yourself that you have done so much for her xxx
     
  7. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    Hello Fizzie, yes thank you so much,I've managed to do this-getting her out of hospital, with the weight of one of mums gp's,who have advocated our joint need to make the end as dignified and peaceful for her,as would anyone hope for..
    The orthopaedic ward won't be seeing mum for a review appointment this week that is for certain,if mum is still here,I won't put her through the upset of sending her for the check up on her shoulder,it isn't going to make any difference to her now..
    She's got an infection-brought back with her from the hosp,so it proves to me that the initial lot they gave her the night she was admitted,didn't or maybe did work,but she has acquired another whilst in there as her system is shutting down..
    Mum knows she is going and has said so as much in a few clear,oddly clear things she's said,in between her hallucinations,but she is not afraid to go,it's so very different to how I imagined and also thankfully so much different from how her mum,my grandma passed.. It is what it is,and i accept it..
    Thank you so so much for your kind support,it does make the world of difference,xxx
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    We are all here for you for the coming days and beyond. My mum was surprisingly clear and comfortable at the end - like yours she knew the time was close and I talked to her about the people she had known and those that would be waiting for her and she smiled gently. I couldn't get her out of hospital but I think she was only aware of me in the final hours anyway - it's strange isn't it how at a time like this the world is stripped back to basics and we realise that they only things we need at the end are the things we needed at the beginning - the warmth, the comfort of someone's love and very basic care.

    Thinking of you xxxxxxxxxxxxxxxxx
     
  9. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Oh I'm so pleased you got your mum home! Such a relief for you both I'm sure xx
     
  10. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    Thank you Fizzie and Dimelza...((((hugs)))).. Mum is in a peaceful deep sleep now... I'm waiting for district nurse, just to make sure...
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    She sounds very snug, you try to take care of yourself now. Glad the DN is coming in regularly - it is good to have face to face support x
     
  12. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Well done on getting your mum home. I hope she remains peaceful and that you're able to stay strong.
     
  13. Slugsta

    Slugsta Registered User

    Bless you for fighting to get your dear Mum home, where she belongs. Bless you for putting your own needs aside to let her go on her final journey. I'm glad you have DN to support you, hope you also have family and friends to help you through this difficult time. You are in my thoughts.
     
  14. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    Thank you all..yes,she's peaceful and not suffering,I've tried to give her pain relief this morning the oromorph,but she spit it out,so just waiting for the district nurse to come and sort her syringe driver out..
    This is totally the opposite to how my dad passed,in hospital on the renal ward,there were no side rooms,just his bed on the ward with a curtain pulled round and him struggling till the last..not the end I wanted my mum to have to go through,so yes,I'm glad I stuck to my guns,took some doing,but I do want to say to anyone who is reading this and they want a dignified end for their loved one be at home or in a care/nursing home,then do what ever you think right with a good gp's advice and support and you can put plans-like the right care plan into action,so your families wishes are respected and backed up..
    Xxx
     
  15. Dimelza

    Dimelza Registered User

    May 28, 2013
    130
    Chaucer I completely agree with what you said about fighting. At times everything feels like a battle but it's one worth fighting. I've managed to keep dad in his nursing home despite 2 strokes and I'm so pleased.
     
  16. Chaucer 1931

    Chaucer 1931 Registered User

    Mar 30, 2014
    226
    It is Dimelza,it's a battle that most of us on here have to go through to get what our loved ones need and support for us too,it shouldn't be that way in these modern times,but we do it because no one will do it for us..
    I wish your dear dad a peaceful comfortable passing.. And try and get a hour or twos rest,you need to take care of yourself too.xx

    My mum is deteriorating,I think it is nearly time,from the feel of her I think that she has the uti,spread into pneumonia,but she is peaceful still and I have no hesitation in calling the nurses out if I think she needs anything to help her..

    It's hard though I knew her time was coming,had a few years to prepare(?)
    for this,and when mum was in distress or yet another full blown hallucinatory uti fuelled spell,or confabulations that distressed her and us,I wished that she would die,because,well you know...there is no cure,no alternative,no hope...

    She's not suffering anymore and will be peaceful and rid of this disease that turned her into someone else and robbed her of her last few years..
     

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