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Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
Well, we are day 5 into our first hospice/ hospital facility stay. Things aren't looking too good, no since in getting into all the detailed Dr. Talk....... I guess we all know what the end looks like.
I've just been so upset for one; well the obvious and two the forum would not allow me to log in, so I couldn't talk to you all clear from Sep. til now. ( and I paid 150.00 to be on here)
But I m here now, so I guess that's all that matters.....
It's been really lonely not being able to talk to people that know what your going through.
My poor hunny is slipping away from, and I have to let him, not sure how long it's gonna be now, but it's close....... He says he can tell he feels it... I'm just so sad....and mad. And just down right heart broken, feels like I can't breathe. ( sorry bad choice of words) but that's what it feels like.
I guess I just need a few cyber hugs from the people that have gotten me through this far!
My world is crumbling, and all I can do is sit and watch!
F****** bull****!
Ok, enough of that.....I feel bi polar at times, cause I keep going from bawling to forcing myself to snap out of it and back to bawling! I feel so selfish just typing all this because he is the one that is passing and I still get to live, and it's just not fair or right, or anything!
So lost".........
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,483
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am very sorry please know I am sending many hugs and holding your virtual hand. Wishing you strength and comfort and your beloved a peaceful passing when the time comes
 

Snowman78

Distinguished member
Joined
Dec 3, 2013
Messages
158
Reason
CALS
Diagnosis
12/2013
Country
US
State
SC
City
Sumter
I am so sorry for what you are going through, I know it is very tough! We had a bad scare with dad just the other day to the point he told us is was over he couldn't go on but eventually settled in and is doing a little better as of this minute but that is subject to change at any minute. Big hug for you and your PAL and we are here holding your hands in support and love during this very difficult time. This disease is a monster and all we can do is watch and give our love and support. Prayers going out to ya'll from South Carolina!
 

WMS10

Active member
Joined
Nov 26, 2014
Messages
34
Reason
CALS
Country
US
State
virginia
City
Virginia
I know exactly how you feel. My wife and mother of our 3 daughters is also nearing the end. I have all the same emotions you do. So f'ing angry and sad. My 12 year old told me a couple of days ago that she has hope for mom because she learned about stem cells in science class and how they are going to help cure diseases. I didn't have the heart to tell her there is no hope for her mom. This disease just plain sucks. Sometimes wonder if I will survive this, then I feel guilty for feeling sorry for myself when she's suffering. So sorry for you. So sorry for all of us.
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Sending you a huge hug. I am so sorry for the hell you are both going through. I hate to use the word hell but with this disease it is certainly appropriate. I will be praying for you. I hope it gives you at least a tiny bit of comfort to know that we do care. Please vent all you want on here. We will listen and hold your hand through it all. Kim
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
City
Suburban
Hugs to you, Sissy. Lighting a candle for you and your PALS tonight. Wishing you strength to bear this burden, a gentle passing when that time comes for your PALS, and wisdom for your hospice team.
 

IluvNY

Member
Joined
Jun 14, 2011
Messages
26
Country
US
State
nj
City
montclair
Sending you a cyber hug as well. Every emotion you describe....I have them as well almost 2 yrs later. I logged in today after a few months just to see, I don't know why really. I feel sad and feel sad for everyone that has to deal with this ***** of a disease,
 

TGB1

Distinguished member
Joined
Mar 23, 2013
Messages
193
Reason
Lost a loved one
Diagnosis
12/2012
Country
US
State
PA
City
Pittsburgh
Sissy I am sorry you are going thru this with your husband. My mom is very near the end also and every day I am just sitting near her, holding her hand and telling her I love her. I'm so furious with this disease I can't even put it into words - mainly for what it has done to her, but also for the horrible toll it has taken on me and my brothers. Our lives will never be the same. I wish you strength.

Trina
 

andycap

Active member
Joined
Sep 16, 2014
Messages
56
Reason
CALS
Diagnosis
07/2014
Country
US
State
maryland
City
baltimore
All of us CALS knows what is comming but it sure as hell doesn't make it any easier when it dose.
We are all in this together,sending you many hugs and my deepest sympathy.May the end of
his journey be peaceful.

Andrea
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,659
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Sissy we are all here for you. be brave, you are not alone and we are all here holding your hand and sending hugs. you have no need to feel guilt for your feelings- they are normal and you are suffering too. his suffering will end soon.

this disease is so horrible and unfair. it is a hell on earth truly. Please, keep posting and talking to us. we will take the finally journey with you and do all we can to comfort you and lift you up.

try to find the time to just sit and hold his hand, and give him the love in your heart. rest when he does or when hospice is there. you need to be gentle with yourself right now.

hugs,

Barbie
 

Candle2014

Member
Joined
Dec 18, 2014
Messages
16
Reason
Lost a loved one
Diagnosis
02/2014
Country
UK
State
UK
City
London
I've only recently joined the forum but understand your feelings having lost my mum last month. It is such addreadful disease that took everything and then some. I am thinking of you.
 

cheerleader

Senior member
Joined
Jul 6, 2013
Messages
977
Reason
Lost a loved one
Diagnosis
08/2012
Country
US
State
Midwest
City
Small town
Sissy, I grieve for you and all of us. My hubby passed away very unexpectedly from ALS last month- yes, we knew it was coming, but we never went through the hell some of you are going through and we knew it was in our future. In my mind, think he had enough, and hated the quality of life so was ready to go. So when I get down (often) and the tears flow (often), I remind myself that he is free and died peacefully and that he wanted no more losses with his body. He loved Frank Sinatra, and his favorite song was "My Way!" Truly believe that is why he died last month- on his terms, so chalk one up for his spirit, 0 for ALS! When your loved one goes, you have to know there can be a celebration of his life, free of this monster! That can help sustain you. Hugs to all of you. Donna
 

Ronnie& sissy

Active member
Joined
Jan 12, 2014
Messages
62
Reason
CALS
Diagnosis
09/2012
Country
US
State
WV
City
Cameron
You all are just what I needed! Thank you thank you thank you! And please know that there are prayers going out for each and every one of you as well,
He still hasent ate today, but guess what..........oh go ahead and try....ok. HE HAD and BM, and a SHOWER!,!
And you all know I'm doin a lil happy dance inside. The nurse an aid had to help me ( just cause we are not home with his equipment) but I'll take it. It had been 5 days for BM, so totally happy over that. But as we all know that kind of activity he probably won't be awke much the next few days, but one step at a time right..... You all taught me that!
Again thank you all, and the prayers are appreciated, and much needed all around this forum, so God Bless, and I will definatly keep you all updated. Thanks again, from the bottom of my heart!
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,562
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Sissy, I'm so glad that you're feeling better! What an aweful road we must travel--and I'm soo sorry that you couldn't get logged on so that we could support you sooner! How frustrating and lonely that must have been! Perhaps we should swap some email address through PM, just in case that happens again. I can't imagine going through what you are experiencing now without the support of this group.

Hoping for some peaceful days for both of you and sending you hugs.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Sissy hugs and prayers to you and your family.
 
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