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Hello I’m Douglas

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  • Deb
    replied
    Hello Chrissie and Douglas,

    I am so very sorry for this impossible situation. You must feel totally overwhelmed by everything.

    I really hope you have love and support from family and friends for both of you and that you get home soon Douglas, with the right care.

    Thinking about you both and sending hugs,
    Love Debbie x

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  • Gillette
    replied
    Originally posted by Dis1960 View Post
    The battle to get home starts again on Monday. The OT+social worker want 4x visits per day of 2 people each time to operate hoist
    Bed - commode- chair
    Chair-commode- chair
    Chair-commode- chair
    Chair- commode- bed
    So that’s £600 per week before anything else

    No palliative care has not been touched upon

    Hi Douglas,

    Has anyone mentioned Continuing Health Care (CHC) funding? If not, make sure you ask about it. If CHC is awarded you won't have to pay for care.

    When I came out of hospital, my care package was similar to what they are proposing for you. I soon found that the second and third visits were not worth having as the timing was always wrong. My partner does everything for me between the getting up and going to bed carers visits, including using the hoist. Carers come only on alternate days because that suited us better than every day. Do you think Chrissie would be able to attend to your personal care on the sort of basis that I have? This is one of the important issues that you and she need to discuss. This is your life and your illness and you have choices about what happens to you (although, obviously, the OT etc will want to ensure you are safe).

    Leave a comment:


  • Gillette
    replied
    Hi Chrissie,

    You're probably feeling punch drunk with everything that's happened. Perhaps it would be a good idea for you and Doug to talk to each other about what is most important to you both regarding his future care? What things you need or want clarified. Where would be best/easiest for him to be in the short term, for each of you. Things like that. It sounds as though a point has been reached where Doug's and your wishes and preferences need to be shared with the healthcare professionals. I can't see any reason why he doesn't have a referral to the palliative care team.

    Please take care of yourself, Chrissie, and remember that we will give you and Doug support - you only need to ask.

    I'm sending huge electronic hugs to you both.

    Leave a comment:


  • Kayleigh
    replied
    Hello Douglas

    Sorry to hear about the situation you are in. I hope you are being made as comfortable as possible.

    Love and best wishes to you and your wife.
    Kayleigh xx
    Last edited by Kayleigh; 29 June 2019, 16:06.

    Leave a comment:


  • Dis1960
    replied
    The battle to get home starts again on Monday. The OT+social worker want 4x visits per day of 2 people each time to operate hoist
    Bed - commode- chair
    Chair-commode- chair
    Chair-commode- chair
    Chair- commode- bed
    So that’s £600 per week before anything else

    No palliative care has not been touched upon

    Leave a comment:


  • Terry
    replied
    Thanks Chrissie and Doug,

    You are stuck in a hard place. I can't understand why they are unable to lower your CO2 level, it seems simple but I can only guess that something more complex is wrong.

    Ask for a alternative if you have trouble with soft food and try to get a few fortified drinks in your cupboard for top up and back ups.

    Yes you could have a RIG opp but I guess that they don't think it's worth it at the moment.

    It would put you through some discomfort etc and cost them.

    Please look and see if you can be transferred to a hospice for the next two weeks as I think that both of you would be more comfortable, unless you have a side room there.

    Hopefully at home you can sort things out and just maybe lower your CO2 levels with Ellie's help, can't do much worse.

    Hugs to both of you.

    Love Terry

    Leave a comment:


  • Ellie
    replied
    Oh Chris, I am so, so sorry to hear that - it's no wonder you're shaking.

    If you feel there is any ambiguity in the language used and you want any aspect of Douglas' care clarified, please do ask - you shouldn't be left wondering about anything.

    It's an unbelievably hard situation for both of you and you may need to have difficult conversations as to a care plan for Douglas.

    At this stage, he shouldn't be almost forced to eat tasteless mush - if he wants to continue with full nutrition he can ask for an NG tube be inserted just as he is, no sedation, no meds required.

    Or he may opt to eat and to enjoy what he wants and ignore the 'Jaffa cake' test. That's what I mean about having a chat about priorities.

    Was palliative care discussed at the MDT meeting?

    Again, I'm so sorry you're both in this situation.

    Love Ellie.

    Leave a comment:


  • shrew
    replied
    I dont understand why they couldnt do the rig, there is no anaesthetic, Mick just wore his nippy.

    Leave a comment:


  • Dis1960
    replied
    The main problem with the meeting was the insistence that a feeding tube would not extend life whilst ignoring lack of a feeding tube increases the risk of dying earlier from an aspirational pneumonia

    Oh and they seem to have made the choice for me as tomorrow’s menu is from the soft not puréed diet
    Last edited by Dis1960; 29 June 2019, 13:59.

    Leave a comment:


  • chrissie57
    replied
    Hi, Doug's wife here. He wanted me to give my impression of the meeting, although I am not sure there is much value in my doing so. It appeared to me that he was being given the choice between quality and quantity of life (although they seemed to be making it clear there would be very little quantity no matter what).
    They did say they were unwilling to risk either PEG or RIG. Doug was told he stick to the pureed diet which he dislikes but is 'safer' or eat/drink whatever he wishes and accept the attendant risks.
    They APPEARED to be saying that he presented one of the most complex and difficult cases they have encountered.
    As his wife, all that really came over was that his prognosis is very poor and that he has even less time than I thought - I have been shaking slightly ever since and still am at this moment

    Leave a comment:


  • Ellie
    replied
    Originally posted by Dis1960 View Post

    So much so that the risks of PEG and of RIG are too great so neither can be done.
    They actually said there would be great risk of not coming round from the anaesthetic in either opp
    Anaesthetic is NOT used in a feeding tube procedure. I do understand their reluctance to do a PEG procedure if your CO2 is consistently >6.0kPa, but not a RIG procedure, given you can be fully awake for it.

    In the PEG procedure, the person is usually lightly sedated but it can be done awake, with just the throat numbed, so swallowing the actual endoscope is a more pleasant experience. Local anaesthetic is used at the incision site. The PEG procedure can be done in the Endoscopy Suite, rather than an operating theatre.

    In the RIG procedure, the person is awake throughout and can wear NIV at all times. The RIG procedure is done using X-rays.

    If they won't give you a PEG or RIG and you still want some type of feeding tube, an NG tube can be inserted through your nose and down into your stomach and will allow you to take the same supplementary feeds and fluids as through a PEG/RIG feeding tube.

    Sorry your CO2 levels remain high. Do you know your oxygen sats level? (it's a %)

    Big hugs.

    Love Ellie.

    Leave a comment:


  • Sheila
    replied
    It seems strange with this peg/ rig situation, I suppose every hospital is different I was told if I had a peg I would have no sedation only a throat spray. Anyway Douglas I hope you get home very soon.

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  • Gillette
    replied
    Sorry that things are so negative for you, Douglas. I hope you'll be able to get home soon.

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  • shrew
    replied
    Mick had his rig done with his nippy on.

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  • Dis1960
    replied
    I suppose I should have expected that MDT meeting but I didn’t

    Apparently I’m a difficult case and nothing they can do gets the CO2 down to a safe level

    So much so that the risks of PEG and of RIG are too great so neither can be done.
    They actually said there would be great risk of not coming round from the anaesthetic in either opp

    So the idea is to get home in the next 2 weeks? The Nippy + cough assist will help
    Last edited by Dis1960; 28 June 2019, 16:36. Reason: Clarify

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