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  • Gillette
    replied
    Thanks, Lynne.

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  • Gillette
    replied
    Originally posted by shrew View Post
    Good luck with it all Dina, My Uncle was in hospital one to one care with dementia and they got his through for a home for him.. It does take a while
    Thanks, Shrew. Mine was a fast-track application. The funding was not approved (but not rejected) because it was felt that, due to complexity of my needs, it would take longer than 48 hours to set up an appropriate care package. If approved, it should be considerably quicker than a standard application.

    I am having to learn to be a patient patient, but it doesn't come naturally to me! Ha ha.

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  • shrew
    replied
    Good luck with it all Dina, My Uncle was in hospital one to one care with dementia and they got his through for a home for him.. It does take a while

    Leave a comment:


  • Lynne K
    replied
    Good luck Dina. Lynne x

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  • Gillette
    replied
    Originally posted by Ellie View Post
    At least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it

    Love Ellie.
    Amen to that, Ellie!

    I had a meeting with a nurse from the CCG in my home area, about the CHC application. My partner, son and I all felt it went well. There will be an MDT meeting with the CHC nurse and me next Thursday, at the end of which she should be able to tell me if I am eligible. You never know, I may get home this side of Christmas!

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  • Ellie
    replied
    At least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it

    Better to get your feeding regimen stabilised before moving on.

    Love Ellie.

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  • Gillette
    replied
    Originally posted by Ellie View Post
    Might the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.
    Best wishes to you and a big hug!
    Love Ellie.
    I was having Fortisips during the day via the tube but was feeling full and uncomfortable all day. I had completely lost my appetite and didn't want to drink. We were trying to stimulate the appetite and the drinking but the situation was made worse by having the Fortisips.

    I'm sure it will get sorted soon, although I would rather not have any more of the "challenging" days!

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  • Ellie
    replied
    Onwards & upwards Dina!

    There are various different feeds - higher calorie, protein, fibre, fat and soya based - so I'm sure you and the dietitian will find a suitable one, though I hope you won't have many more challenging days....

    Might the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.

    It took me a full week, or more, to work up to my system getting used to a full feed @125ml/h.

    Best wishes to you and a big hug!

    Love Ellie.

    Leave a comment:


  • mickmac
    replied
    Hi Dina

    Sorry to hear about your troubles. I'm living with my parents and I'm surprised at the amount of work and time required for three feeds a day so the pump could be a consideration for me and my family in the future.

    Mick.

    Leave a comment:


  • Gillette
    replied
    Originally posted by Ellie View Post
    Dina, did they not ease you into the overnight feeds? (Nutrison?) The Nutrison is very different to Fortisips.

    At the risk of sounding 'preachy', as with all feeds, your system will get used to them, but really they should be gradually introduced to let you adjust to the new food type.

    How was last night, or should I say today?

    Love Ellie.
    Today has been "challenging"... The dietician came round today and we are changing the feed that I have. I'm not too bothered as I am likely to be in here a while longer.

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  • Gillette
    replied
    Originally posted by mickmac View Post
    Hi Dina

    My bowels are back to normal now I think. I don't do any pump feeds I just use a syringe. Do you not find the night feeding a distraction. I'm afraid I won't be able to sleep if I use a pump.

    Mick.
    Hi Mick,

    Bolus feeding would be a struggle for me as my arms and hands are deteriorating quite quickly. Also, my partner has health difficulties that mean he would not be able to help with bolus feeding.

    I don't find the night feeding distracting, although I haven't been able to try it at home yet.

    Leave a comment:


  • mickmac
    replied
    Thanks Ellie

    I hadn't considered those points.

    Mick.

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  • Ellie
    replied
    Sleeping on your side wouldn't be a problem Mick, the tubing (giving set) is long enough.

    The big advantage of pump feeding is that it's plug in and go, meaning you or your carer don't have to give you 7-8 bottles of Fortisip (or equivalent) throughout the day, leaving you both with a freer, non-regimented day.

    I don't have full-time carers. I eat a lunch most days, so have a 765cal pump feed in the evening for 4 hours. On days I don't have a full lunch, I get 1530cals overnight, rather than someone having to give me multiple Fortisips during the day.

    As I said though, the choice is yours, go with whatever best suits your lifestyle needs and preferences.

    Love Ellie.

    Leave a comment:


  • mickmac
    replied
    Hi Ellie

    I always sleep lying on my right hand side so I am not sure how that would work with the pump. Can you tell me what exactly is the advantage of using the pump instead of just using a syringe all the time for feeding.

    Mick.

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  • Ellie
    replied
    Mick, I use the pump overnight twice per week and I have to say it doesn't interupt my sleep at all.

    It is very quiet and will happily run on a full battery all night. I cannot move, so the tubing isn't an issue for me, but I know plenty of people who can turn in bed and happily sleep being tube fed.

    It's whatever suits you best really - I mix & match between daytime and overnight pump feeds.

    Love Ellie.

    Leave a comment:

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