Old 12-03-2018, 07:38 AM #1 (permalink)
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Default Slipping Away

Hi all. I feel it wont be long until my husband is set free from the horrid disease. He's been in hospital now for 4 weeks with pneumonia and sepsis and is getting worse.
I've no-one to talk to about it, I don't want to be so upset to my kids as they aren't coping at all with their dad's condition.
It's all so very sad for us, my husband loved Christmas and I'm trying to be festive for him but it's all too much. He'll be 59 in 8 days time.
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Old 12-03-2018, 08:29 AM #2 (permalink)
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Default Re: Slipping Away

Hi Twinkle. (What a festive name!)


I'm Mike. I'm thinking about what you just wrote. It's a triple whammy, a big hit to morale--what little morale there is left.


I'm sorry the kids aren't coping. How old are they? What's their situation?
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Old 12-03-2018, 10:09 AM #3 (permalink)
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Default Re: Slipping Away

Hi Twinkle,

I'm so sorry you and your kids are going through this horror. I don't even have words that will comfort you.

Just know that you can post anything here, if it helps.
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Old 12-03-2018, 11:07 AM #4 (permalink)
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Default Re: Slipping Away

Mike, my kids are age 27, 27, 23, we're all extremely close to one another.

There's hardly any morale left, I will always fight for my hubby despite those 3 letters of MND which is like a black plaque the way drs/consulatants/nurses see my husband. He was refused ICU twice because of the MNF
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Old 12-03-2018, 03:23 PM #5 (permalink)
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Default Re: Slipping Away

Understood. I hope the kids are helping out, or at least going to visit at the hospital. Can the kids do that? Will they?
From what I've read around here, we're never really sure when the end approaches. Sometimes it just "appears" to be the end, and then things get better. It's a terrible roller coaster. Have you thought about what you'll do afterward? In the coming years?
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Old 12-03-2018, 04:10 PM #6 (permalink)
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Default Re: Slipping Away

I'm very sorry about your husband, Twink. I understand that your kids are upset, but I would only make sure you are being honest with them about the outlook, and they can use that information as they will. You don't want "But I thought -- " in the years to come.

Is there a friend, colleague, clergy, counselor, that you can call or email to check in? I believe the MND Association offers support as well? And I might suggest the same for your kids.

Many people would be happy just to listen, understanding your situation, if you tell them that you just want to talk. It's perfectly fine to rattle on for a bit. And of course, we are always here.

Best,
Laurie
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Old 12-03-2018, 04:34 PM #7 (permalink)
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You’re not alone Twinkle
Your children are grown ups.A nice talk might help all of you We are here
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Old 12-03-2018, 04:35 PM #8 (permalink)
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27 and 27 ? Twins ?
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Old 12-03-2018, 08:23 PM #9 (permalink)
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Default Re: Slipping Away

No, they're 28, 27, 23, sorry typo mistake.

Today we found out hubby had a perforated lower bowel and infected scrotum. They can't operate on the perforation, he's to be given anti-biotics and wait and see. My poor hubby is certainly going through it that's for sure.
He's still battling pnuemonia.
He's a brave fella. Xxxxx
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Old 12-03-2018, 09:08 PM #10 (permalink)
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Thinking of you and your family Twinkle. As others have said, you are not alone we are here for you. Kate
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Old 12-03-2018, 10:26 PM #11 (permalink)
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So sorry Twinkle, rapid progression is very hard to take in
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Old 12-04-2018, 08:16 AM #12 (permalink)
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Default Re: Slipping Away

Twinkle I am so very sorry to hear your husbands current situation. However, I beg you to be brutally honest with your kids. They are adults. They will not like what they will hear, but I’m afraid they could be bitter later if you didn’t tell them and they missed opportunities with there Dad.

My husband just passed on Friday at 56, our kids are 31 (his wife 29) and our daughter 24. While I tried to keep things light for our DD who is in PT school, I was honest and I did get her home here before the inevitable.

That said, Brian had many close calls over the years. But still I was honest.

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Old 12-05-2018, 02:41 PM #13 (permalink)
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Default Re: Slipping Away

Oh my goodness, diagnosis was only in October? In my experience, acceptance comes at different times. It is really hard, but your kids need to know how serious it is. We’re here if you need to vent. You and your family are in my prayers.
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