Old 12-19-2017, 02:44 PM #31 (permalink)
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Default Re: Rapid Decline

I second Tillie’s recommendations to emphasize comfort rather than trying to treat infections. Hugs to you.
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Old 12-20-2017, 09:55 AM #32 (permalink)
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Default Re: Rapid Decline

The hospice nurse came out again today and placed a catheter. Instructed my sister to continue feeds if he says he is hungry. I am so confused. Doesn't this make things worse?? My poor sister is there today and totally overwhelmed at this point. He is still refusing to lay in bed at all.
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Old 12-20-2017, 11:09 AM #33 (permalink)
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Default Re: Rapid Decline

If heís hungry, giving food is appropriate for comfort. Itís all about comfort at this point. He may be refusing to lie in bed due to confusion or pain.
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Old 12-20-2017, 12:43 PM #34 (permalink)
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Default Re: Rapid Decline

Definitely it is about comfort. The nurse was correct - if he is hungry. That is the key - I wouldn't be coming in and saying "Are you hungry? Shall I bring you something to eat" every couple of hours. But if he is hungry of course you would give him something - I would keep it a small meal however as you don't need to overload his system. Feeding a small amount very slowly will give a feeling of satisfaction that will be easier on his system than a large amount.

If he wants to get out of bed why would he not? Again it's about comfort.

The thing that is possibly hardest to really understand is how very different every PALS is. Listening to them and doing what they want is the key. We can suggest things based on what other PALS have wanted, but really his comfort is personal for him and what is happening to him.

I would suggest just lots of reassurance to him, lots of yes of course you can have this, yes of course we will do that for you. Let him know he is loved and that you are there for him and nothing is too much for him. This will give him the most peaceful passing whether it takes the next 24 hours or the next month.

You won't regret it later. But no one can say in advance just how long this will take and just what will happen when. Try to stay in the moment and with him, as that's all that is a certainty. Many hugs to you, I'm sure he knows how much you care xx
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Old 12-20-2017, 12:56 PM #35 (permalink)
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Default Re: Rapid Decline

ctollar...I felt the same just a few short months ago. My brother passed away in September. While I still feel very sad I am getting better. I never thought I would. Lauries right. You will get better but right now your in the moment. And it's a pretty heavy load. Just love him while you still can. I'll be thinking of you.
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Old 12-20-2017, 11:46 PM #36 (permalink)
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I’m sending you and your dad lots of love and peace.
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Old 12-22-2017, 04:49 AM #37 (permalink)
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Default Re: Rapid Decline

Quick update.. he finally agreed to lay down in bed (propped up of course.) My brother, sister, and I all were with him yesterday and told him it's ok to let go. He looked peaceful. Hopefully God will grant him a quick release from this monster!!!
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Old 12-22-2017, 11:07 AM #38 (permalink)
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Thank you for updating us, I've been thinking of you so much and hoping for a quick release for your precious father xxx
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Old 12-22-2017, 05:31 PM #39 (permalink)
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C Sending peace and strength to you during this very tough time. You're doing great!

Hugs,

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Old 12-22-2017, 06:18 PM #40 (permalink)
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ctollar, good wishes coming your and your family's way.
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Old 12-23-2017, 01:12 AM #41 (permalink)
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Thinking of you and your dad and family, we are holding your hand in the background xxx
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Old 12-23-2017, 06:07 AM #42 (permalink)
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Default Re: Rapid Decline

Thank you all, he is still holding on..... When he does eat the feeds are not going in the tube all the way. They either come back out or take a long time to go in. Hospice said don't feed him unless he specifically asks now.. What I am wondering is, we give him his meds through the tube. Will that go in or just come back out too?
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Old 12-23-2017, 01:26 PM #43 (permalink)
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Default Re: Rapid Decline

Just do the meds slow and be sure they have all gone in before you clamp off or remove the tube (depending on what type you have).

Definitely you are best not to feed him unless he asks for it - that means you don't ask him does he want a feed. It's not doing him any favours now to feed him truly.

Many hugs to you - no matter how he seems, he will know inside that you are loving him and looking after him. Tell him all you want to tell him as he will hear you with his heart.
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Old 12-23-2017, 02:13 PM #44 (permalink)
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Oh Tillie... my heart is breaking... How much longer does have to endure this monster? He is no longer him yet he still holds on.... my heart is breaking..
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Old 12-23-2017, 03:43 PM #45 (permalink)
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Default Re: Rapid Decline

My heart breaks with you, it is beyond cruel.

All I can say, having done this at home, is forget nutrition, give as little fluid as you can just to get meds in, and tell him you will be ok if he goes, that he does not have to fight this any more. Have you said this out loud to him? Honestly sometimes this makes all the difference. I know I told Chris this about 2 - 3 hours before he passed.

Give him all the meds he needs to stay comfortable - don't let him start becoming uncomfortable or distressed and think you will just hold out a little longer. The moment you see signs of discomfort be ready to give him palliative meds.

You won't 'kill him', but you will help him pass more quickly and in peace if you stick purely to comfort of body and of his spirit.

Inside you are screaming in pain I know, but to be honest he can't go too much longer - just keep the meds up know I'm holding tight to your hand. I so wish I could do more.
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