How to go on after ALS?

[aquirk]

My wonderful husband died last week after a 3 year battle with bulbar ALS. In many ways his death was sudden because we didn't realize that his respiratory muscles were as weak as they were. I feel like I have been through a war. I'm incredibly sad by the struggles that he endured during the last months of his life. I don't know how he managed to find the inner strength to get out of bed every day and face life. The realization of what he went through every day has now hit me and that combined with his death makes me very sad.

I came here because I know that people here understand.

Anne.

 

[Miss]

Anne, I am so sorry about your husband's death. I often wonder how I will handle it when my husband dies. He was diagnosed in April of last year, too. I can certainly understand how it could have come as a surprise. Several friends with ALS have died "suddenly". I am never sure where my husband is in his progression either. Some weeks he seems okay. Some weeks he seems close to death. My thoughts and prayers are with you as you start your next journey.

 

[Ms. Pie]

You and your dear husbands are in my thoughts and prayers too. I'm so sorry for your loss Anne.

Big hugs,

Marta

 

[Zaphoon]

Anne, I'm so sorry you lost your husband to ALS. Your loving care made a world of difference to him during those 3 years of fighting the disease. God's blessings on you!

 

[jwife]

Anne, so sorry to hear of your loss. I can only imagine how tough this has to be for you. My time for facing this reality is in the future. This is the one spot where I'm sure we can all relate to your feelings. May you find peace and comfort in knowing that he bravely fought the battle against this awful disease. Thoughts and prayers are with you and your family.
Janis

 

[brooksea]

Anne, I'm sorry. Sending you a big hug and hoping you will find comfort soon.

 

[Bad Balance]

Anne;

I am sorry that the progression went so quickly.
Yes we do understand a bit of your feelings. I am so sorry for your loss.

- Jerry

 

[abbas child]

Dear Anne,

I am so very sorry your husband is gone, and that it was unexpected. But I'm also sure your love helped him get up in those tough mornings, as your love shows very clearly. I pray for your peace now, as you grieve.

Blessings,
Ann

 

[aquirk]

Thanks so much for all of the support. I wish that I could have done more for him but the rational part of me knows that I did all that I could. I couldn't take away the struggles that come along with ALS. That's really what saddens me. It's hard to explain this to people but I know that everyone here understands.

Anne.

 

[heymom05]

Anne, we DO understand. I am so sorry for your loss, but the strength you had during your husband's life will carry you now. Stay with us, we will need you to show us the way.

 

[smwelder]

so sorry about your pals passing.

 

[abbigaill2]

Anne I am so sorry for your loss. I too lost mine 5 weeks ago. I don't think I will ever come to terms with this hateful disease but I look for the joy in great memories of happier times with him. Some days are good and some are not so good. I do get it when you say you feel like you have been through a war. I felt like I had post traumatic stress disorder. I guess that comes from being a survivor of this traumatic event in our lives. I am praying for peace of mind for you and sending you a hug. Be gentle with yourself. Abbi

 

[Dave C]

Anne - sorry to hear of your loss. Sounds like he was a very courageous man and will live on in your heart.

 

[cervus]

So sorry for the loss of your husband Anne and Abbigail. It's just so tragic. This disease is awful. I think everybody here on this site has lost or will lose a loved one or of course will lose their own life. My husband won't be here too, too much longer either. We all feel this terrible loss. Take care of yourselves....

Yasmin

 

[pepsiman]

Anne,

I'm not on here often anymore but I lost my wife just about a year and a half ago (actually 19 months to the day, today). Also after a 3 year battle. I get where you're coming from and I was in exactly the same frame of mind after she passed. In some ways I still am. The grief is unlike anything I've ever known and turned out to be something I'd never expected. I too knew what was going to happen and yet, was completely taken by surprise when it did happen. I posted this up to my Facebook page today because I've been in a bad place all day. I didn't write it, I copied it from the Young Widows Forum. You might want to check that out, but I'll be honest, it can make things worse:

WHAT NOT TO SAY

"Don't think about it"
"I know how you feel" (you don't)
"I understand"
"You shouldn't feel that way"
"It was God's will"
"You'll get over it"
"You're so strong"
"Get on with your life"
"You should be over it by now"
"Be thankful you have children"
"You'll find someone else"
"S/He wouldn't want you to be sad"
"If only you had- "
"It could have been worse"
ask "How are you doing"