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Thread: My dad

  1. #161
    Forum Member Dave K's Avatar
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    Quote Originally Posted by Steve View Post
    Would she wonder about meals etc?
    No, I do not think so. Take now for instance, Julie hates it when I walk in with an Ensure, moans, pulls faces, shouts "NO" take forever and ever to drink it (unless there is a bribe). and if I take my eye off her for more than a minute she has tipped down the sink or loo and swears to me that she drunk it.

    So, I would definitely say no, I do not think she would be bothered at all. Julie never asks for food has never questioned why she is not eating food (of late) and has absolutely no interest in ever eating (or drinking Ensure) again if it were not for me, even her day care staff fail to 'encourage' her to drink them.

    But Julie would like to eat mousse and drink copious amounts of tea during the day, so instead of drinking Ensure (which she hates) she can have a mousse and more tea. Now that would be heaven for Julie, I know and would be a perfect solution for myself too.

    But only time would tell, I never make a plan and think it will work and if it did work then it is always open to change along the way, which is the norm in this house lol

    Dave X

  2. #162
    Forum Member Katrina36's Avatar
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    Hi Dave, dad does have the smaller bottle, it has 200mls in it, he has tried drinking them but no good, he also gags with the thickner so that's a no no aswell.. I think you right Steve I was saying to mum I think he'd be better with it running slowly overnight when he's sleeping, I'm going to suggest this to him tomorrow and see what he thinks and see if the dietician will bring a pump, alltho I have a spare 2 for Connor, so he can always use one of them to try it ... Katrina x

  3. #163
    Forum Member Steve's Avatar
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    I have not craved food or felt hungry for years. Strange disease.
    sorry about the absence of caps in my posts, my shift key is broken.

  4. #164
    Forum Member Dave K's Avatar
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    @ Steve...

    Yes, a very strange disease indeed, mind you I can go a couple of days (when busy or stressed) before my body tells me that I have not eaten, happens regularly, but I suppose if your body has the requirement it needs then it is not going to tell you that you are hungry I suppose.

    @ Katrina...

    200ml... Hmmm the Ensure compact is 125ml per bottle with (300 Kcal) was that a typo or a different product as I think the larger Ensure Plus is a 220ml bottle

    Either way, if your dad can go on an overnight feed this would be beneficial for your Mum too, one less thing to worry about... But your Dad will have the final say no doubt (and as he should too)

  5. #165
    Forum Member Katrina36's Avatar
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    Quote Originally Posted by Steve View Post
    I have not craved food or felt hungry for years. Strange disease.
    My son is like that, he's pump fed and never feels hungry, maybe it's coz your actually being fed so your feeling full without the mechanics of eating . Can I ask what feed your in Steve?... Katrina x

  6. #166
    Forum Member Katrina36's Avatar
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    Hi Dave,, il need to have a look tomorrow to see exactly which one he has, I def think an overnight feed is the way to go ... Hopefully dad will agree to that and think it's a good idea.... Katrina x

  7. #167
    Forum Member Steve's Avatar
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    Not a clue Kat! I rarely track my meds going in, apart from laxatives and antibiotics. Bad combination!
    sorry about the absence of caps in my posts, my shift key is broken.

  8. #168
    Forum Member Dude's Avatar
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    Well done Roth. I missed that Steve.

  9. #169
    Forum Member Ellie's Avatar
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    Morning Kat,

    I'm on Nutrison Energy Multifibre feed. It's 1.53kcal/1.0ml. (Dietitian recommended it for my needs)

    My dietitian worked out my required calories - 1800 p.d. as I'm sedentary and weigh 47kg - I've not changed in years, that was my pre diagnosis weight too. My required calorie intake is lower now as I just sit around doing nothing .

    xx.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #170
    Forum Member Katrina36's Avatar
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    Hi Ellie, I've asked he dietician today about the pump and they said they could do that ..

    Dad however said to her that he's not ready to be attached to the pump and would like to keep continuing with the boluses and see how he gets on with them. He's also tried sipping the ensures just tiny amounts at a time and see how he goes.

    He's so stubborn. Wonder if that's where I get it lol.

    Dads got some coating on his tongue, he's getting some kind off drops for this, has anyone else has this?.... Katrina x

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