Dave's nightmare

On Sunday they decided to reduce sedation David started to wake up.not able to speak. But could write things down .Monday ventilator tube taken out,more awake doing well as far as we were concerned.Moved across to HDU. Physics tried to get him out of bed flood pressure rocketed and they had to get him back into bed.I have insisted on speaking to doctor who has told us he has to eat healthily which he does and NO stress.when I asked them to take the DO NOT RESUSITATE off his notes they brushed this aside the doctor suddenly hadn't the time to discuss any further.

Suddenly late in the late afternoon David is being transferred to the respiratory ward all lines taken out and moved.

While I was with him for a further 4hrs his his obs were checked once.

When I visited yesterday they came and informed him he can go home tomorrow, I am arriving at the hospital this morning at 9·30 and I want to see the consultant they seem to be dismissing him,he cannot dallas he is instead the has had no input from physics.

I want a full package of care put in place emergency supply of oxygen.Am I being unreasonable? Once I get David home I have to keep him on a even keel as I dare not let him go back into hospital as they will just let him die..As you can imagine I want him home of course but how will he manage to getup the stairs to go to bed.your suggestions would be appreciated.

14 Replies

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  • You can ring Adult Social care for an assessment on dave , tell them it's urgent , you also can refuse to take him home, until care is in place,, do you have a room downstairs where dave could stay, I would go to the hospital early, to speak to consultant or at least nurse in charge about resuse , I don't know how bad dave is meaning quality. Of life or how old or did he request. It himself , but I think you do need a meeting with dave,s consultant , before anything is done ,

    Regards

    Jan

  • many thanks this is what i am trying to do chris

  • many thanks for this this is what i am trying to do this morning i will refuse to have him home until things are in place. christine

  • Good luck Christine ,

  • Hi Christine - if they have a DNR notice on Dave's notes, then you need to sort out why- and request an 'end of life' discussion - I had a hard job getting anyone to talk to us, but eventually they did, we were put in touch with our local Hospice at Home service, they sent a doctor out to see us and everything was discussed. Dave has the right to refuse certain treatments, which can be done via an Advance Directive, but you can't insist on having a particular treatment - the hospice Dr helped us with that. We also registered a Health & Welfare Power of Attorney, so that should my husband become unable to make decisions for himself then either I or my daughter can do so. It doesn't sound as though Dave's doctors are keen to go through all this with you, but it only needs to be done once then you know what's going on. You have a right to know what the prognosis is, if you want to. I felt I needed a plan - then we just get on with life until it needs to swing into action.(I know this isn't how everyone feels).

    Write down what you want to talk to them about - and just refuse to leave until you have seen someone. Ask if Dave can be assessed for oxygen - but it may not be helpful. If the circumstances at home make it impossible to have him home without some changes/equipment /care package then make it quite clear - the trouble is you want him home, he wants to come home - but once you are there it can be a lonley old place if no-one is supporting you. Good luck this morning ! (I hope you see this before going in.....)

    Take care. Gill

  • Good Morning, I can only agree with others especially Gill - I always need a plan in place which then I can revert to when the situation calls for it. I wish you every bit of luck and hope that you are able to bring Dave home with the support you need. Take good care, with love TAD xx

  • As well as docs, I also found sister in charge of ward was also the one who knew most about setting up ang getting the care package going. It took around 24 hours in my hospital. So that's another avenue to explore.

    Good luck

    Tina x

  • I just hope all things have gone well this morning. I agree with what everyone else has written.

    best wishes

  • I can't add anything to the above so will just add good luck and fingers crossed they listen to you. :) xx

  • If the consultant is awkward then put in a complaint and someone will have to address this appalling treatment. Good luck to you. x

  • I am so sorry you & David have had to experience this appalling lack of care & support, it seems to be happening more & more, I really hope you had some success when you went in this morning & are now able to care for David in a manner that supports you both

    Fingers crossed for you

    Karen

    xxxx

  • This is awful. I hope things went better for you when you went this morning. please keep in touch and let us know how things are going for you. Will be thinking of you both. xx JULIE

  • Wishing you luck Chris and hope that Dave will be home sometime very soon. You are right to want a care package in place and I hope you get lots of help with that. Thinking of you both. Lots of love, Carole xxxxx

  • I hope it all works out for your both - take care xx

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