Slipping Away

Status
Not open for further replies.

Twinkle

New member
Joined
Oct 6, 2018
Messages
9
Reason
CALS
Diagnosis
10/2018
Country
UK
State
Manchester
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.
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,179
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
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?
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,297
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
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.
 

Twinkle

New member
Joined
Oct 6, 2018
Messages
9
Reason
CALS
Diagnosis
10/2018
Country
UK
State
Manchester
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
 

Atsugi

Legendary member
Joined
Jan 11, 2011
Messages
5,179
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
Florida
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?
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,427
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
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
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
200
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
You’re not alone Twinkle
Your children are grown ups.A nice talk might help all of you We are here
Hugs
 

MarieLaure

Forum Supporter
Distinguished member
Joined
May 16, 2018
Messages
200
Reason
Loved one DX
Diagnosis
10/2015
Country
FR
State
Ile de France
27 and 27 ? Twins ?
 

Twinkle

New member
Joined
Oct 6, 2018
Messages
9
Reason
CALS
Diagnosis
10/2018
Country
UK
State
Manchester
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
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
438
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
Thinking of you and your family Twinkle. As others have said, you are not alone we are here for you. Kate
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,665
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
So sorry Twinkle, rapid progression is very hard to take in :(
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,413
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
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.

Hugs
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
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.
 
Status
Not open for further replies.
Top