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Thanks Yasmin, she's an angel in disguise...
and by the way...I like your poetry thread :)
 
yesterday the nurse was getting my sis dressed and her pants often bunch around her crotch. The nurse said she spent 5 minutes fixing it and my sis insisted she come get me (guess she wasn't doing it right) so i come in and she tells me what she wants. we are about to transfer her to her lift chair for the day and I tell her I will make sure her pants are comfortable after she is transferred because we are gonna mess em up during the transfer anyway. She turns and stares at the wall and won't talk to me or listen (her way of showing opposition to what I am saying - sometimes she tries to yell). I tell her she can look at me and we can talk or I can stop talking and leave the room and let the nurse handle it. She refuses and I turn to tell the nurse to come get me when she is ready to be transferred. As long as I am caring in my communication (and as a human sometimes I get upset too and we have words), I try to stand my ground. As long as she is safe and her needs are met, she has to understand that every want is not a priority. I told her that what she would get up and do immediately for herself can not always be done by everyone else at that moment and it is unfair to make people around her do things over and over if they don't make sense. If I get your wedgie out to some comfort right now, and I am physically about to move you to your chair, why do I have to get it perfect first, move you and then do it all over again?

I once read a pals story when I was doing an als paper for college a few months ago and he talked about how important he felt it was to decipher his needs from wants for the sake of those around him and he really made sense. I think the frustration of als muddies that sometimes. But poppy I really understand what you are going through. Nobody warned me about the mood swings.
 
Thanks for kind words Yasmin.
Hubby's over his throat infection and now, I got some new concerns...
His ability since last week to eat mash and ready brek is very dodgy, he says it feels like it's sticking and backing up.
As a result he won't eat it any more, leaving him on a diet of soup and custard consistency food with thickener in all his fluids to syrup consistency. His weight is still dropping off, now under nine stone, down from twelve, and he still won't have a feeding tube...
Got a pow-wow on Tuesday with hospice consultant and nurses coming up, going to sort out his wishes...
Any ideas for anything at all to try and hold some weight on him?
 
Oh Mair,
No suggestions just prayers and support!

Jen
 
So sorry, Poppy. Hope the pow wow this week will help. Some add a product called Bene calorie to their food.
 
Do you have a heavy duty blender? I used a Vit a Mix to make thick soups that included cream, butter and anything I could think of that would not alter the taste, but add calories.
 
Yes we got a blender CJ. Have dug it out. Pardon my ignorance but what is a Vit a Mix?
Have you got an easy recipe to get me started please?
There may be progress on a tube (RIG) after todays meeting with the hospice team...got my fingers and toes crossed! They thrashed it out with him for nearly two hours..Can you believe a bigger part of him refusing to have a tube is the fact he can't smoke freely in the hospital AND he wants me to stay with him throughout, including the procedure..which I would if allowed anyway. Silly old sod..why couldn't he just admit this all sooner..
 
A Vit a Mix is a heavy duty blender that will turn a pice of twoXfour into sawdust! The motor is so powerful that it will heat the food you puree. A regular blender will probably do, but you might wear it out. Of course a regular blender will not heat the food, but that why we have stoves.

Here is a recipe for you:

1.5 cups milk
.5 cup cream
2 nuked medium size potatoes
handful of cheddar, shredded
.25 of a small onion (or use a bit of onion powder)
rosemary to taste
salt to taste
Pepper to taste
2 slices of crisp bacon, crumbled

In the order listed above, place ingredients in blender and blend until preferred consistency is met. Thin with milk or cream or thicken with additional potato, if necessary. You can vary this recipe by adding broccoli, spinach or any other cooked vegetable. Depending on how compromised his swallowing is, you can also add chopped meats, such as chicken or ham. I would add a couple of dollops of butter for additional calories.

Good luck.
 
Poppy, if you want to change it up:

Change the cheddar to blue cheese, Stilton. Add a cooked carrot and a cooked stick of celery. Ditch the Rosemary and add some basil. Very tasty.
 
Mair,

Those are his reasons? Oh my... Can you get nicotine patches for him while he's in the hospital? Rog was afraid I was going to put him in a nursing home when he got worse... There's no way in h*** that's gonna happen and I barely left his side when he got his tube and had the kidney stone... I didn't even leave him when the urologist checked him yesterday and that was gross... Our men are a bit silly sometimes...

Jen
 
Mair, I can sympathize with you on the refusal of peg... my husband too. I add benecalorie to his food to add calories (350 per one ounce package). WE have to puree everything--even oatmeal.
 
CJ, Kiwi, thanks..sounds yum, hope he tries it, he's gotten so flipping fussy these days..
Jen, got nicotine patches here..good thinking.. why didn't I think of that? What they going to do for Rog?
Barbie, is benecalorie available any shop or is it specialised? Is your hubby holding his weight?
Clive's intake is a lot less these days, he gets so tired out he only manages small amounts of anything.
Where has my head been these last few months when I can't think of the obvious and I don't know how to make a soup?
There has been so much change since just April/May, it's so scary, and sooo many people calling...I'm struggling to keep up.. :(
 
Mair, it is a roller coaster ride for sure. There's just sooooo much to take in all at once. Thank goodness for the persistence of your Hospice team! It always amazes me at the things that are holding people back from doing something.

The soups sound really good! The Bene calorie should be readily available, we can find it here in the US in the drug store or big box supermarket.

I hope you can get the Peg scheduled soon.
Good luck!
 
Mair,
The urologist has to break up a kidney stone that was found when he passed another one at the beginning of the month. It requires anesthesia so that's a problem I don't know they've solved... Glad you have patches already and I understand feeling behind!

Jen
 
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