Still no words

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
632
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Thursday was the one year anniversary of my husband's passing. It was a rough day. Truthfully it's been a rough week. My MIL and SIL are coming up today. They have still not seen his headstone. Long delays getting it in place - thank you, COVID.

I still can't put into words to others what this journey has been like, but I think you all here will understand. I grieve the loss of his life both before and after his death, if that makes sense. I look back at what those last few years were like and all I can say is "Why?". Why did this happen to such a good person? Someone so full of life, dreams, plans. I know he hated living the way he was. As hard as we tried to make things as "normal" as possible, it just wasn't.

I'm still trying to put the pieces back together, with one big one missing. I'm far from feeling whole again. I've made some progress, but it feels like it's a two steps forward, one step back dance. I feel very alone at times, even when people are around. Other times, I'm fine with solitude.

I promised him I would be OK afterward - and I will be. It's just taking me a while to get there.

Love to you all. ❤
 

EricInLA

Distinguished member
Forum Supporter
Joined
Oct 20, 2019
Messages
113
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
I empathize with you, and I send you good thoughts to make it through. Your words resonate with me. I lost my father a couple years ago -- he was, other than my wife, the closest person in the world to me. We were basketball mates, business partners, best friends. Like your husband, he was full of life and energy - he ran circles around all of us into his 70s. Then cancer took him out in 12 months. I still think about him every day. He talks to me regularly - lets me know when I'm screwing something up. Getting my own diagnosis was of course miserable, but in some sense I'm relieved that my dad doesn't have to live through my ALS journey. Anyway, just wanted to say I hear you loud and clear, and hope that things to get better for you with time. You promised your husband you'd be OK, but you're allowed to take all the time you need to get there!
 

JimInVA

Senior member
Forum Supporter
Joined
May 29, 2014
Messages
852
Reason
Lost a loved one
Diagnosis
04/2014
Country
US
State
VA
City
Poquoson
Well done on being able to share the depth of feeling within you at one year. I imagine I will feel both sadness and relief. I feel the sadness everyday and have to mentally push it out to the edges of awareness. I almost feel guilty, but I look forward to the balance to sadness that I hope relief will one day bring. Nov 2012 - Sep 2020... we're well into finishing this 8th year. My best to you as you find your new path forward. You will be better. I'm sure of it!!

My best...

Jim
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,690
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
That whole week lead up can be brutal. It's an important part of grieving however and you have made it through all the 'firsts' now. That doesn't mean it's easy from here on, but please do be kind to yourself. You will be ok, but one year, such a big raw open wound still. It still hurts like hell and you are still seriously injured.
It really takes time to figure out where the pieces of your new life fit together as it is now a different life and that takes way more time than many people think it should take.
Huge hugs to you 💜
 

Powertools55

New member
Joined
Jun 4, 2017
Messages
2
I'm sorry Kate for your loss, Your story is what I fear most. My wife told me that she will never remarry or date again after I'm gone. I don't want her to be lonely later on. A new life with help from a close friend will help her recover from her loss of me. I also, like your husband, had dreams and plans to grow old with my wife. I used to tell her that I was going to chase her around with my cane. I'm 56 and she is 53. But the ALS isn't what's killing me. It's the sadness in my thoughts of having to leave her, my family, and our friends early. And the sounds of love in their words and sadness in their eye's at the same time when they are around me. It's OK that we get sick, I get it, it's all apart of life, it happens. It can happen to any one of us at any time. Tomorrow is not promised. It seems that this is the GOOD Person's disease since it only happens to the best of us and thank GOD not all of us. But this and other diseases that cause our loved ones to sit and watch us whither away is the saddest part of ALS for me. Kate, your husband wants you to continue celebrating the good positive times and memories that you had together. I hope that my loved ones will do the same. Dying doesn't scare me but the hurt caused to others does. GOD only takes people early because he has a new plan for them. I person is not body and flesh, so when someone passes away, their body and all disabilities are left behind as their spirit moves on to the next phase that GOD has planned for them. Their Spirit is who they really are. Kate, your husband has never left you. As the American Indians call it, He is in the "Spirit World" now You might not see him but he is with you everywhere you go.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,690
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm also sorry to welcome you here Powertools, but wow as a CALS widow all that god stuff is terribly offensive. Hopefully not to the person you are responding to, but really you are best talking up in the PALS section about your own stuff. I say that most respectfully.
If you want to talk religion or spiritual stuff there is even a section for that.
Let's keep it real please.
 

Powertools55

New member
Joined
Jun 4, 2017
Messages
2
Sorry that I offended you. I'm not even a bible thumper. I will head back to the ALS Association Forum now and close my account here if possible.
 

Shaker

Member
Joined
Jul 22, 2017
Messages
13
Reason
Lost a loved one
Diagnosis
07/2017
Country
US
State
NY
City
Middletown
Jzygrl - I totally empathize with you. My wife of 35+ just passed 4 weeks ago. I feel empty and hollow without her. The disease took everything from her and I have to come to the realization that she was indeed suffering near the end and would be selfish of me to have her continue a very un-win-able battle. Robin was an extremely driven person in every aspect of her life and I feel ALS has stolen her from me and my two daughters, and the people she loved. I can’t even imagine what a year from now will look or feel like. It’s seems like yesterday that she was taken from me. I’m so not ready to let go. Just do your best to take care of yourself. (Advice I need to be better at as well)
 

nona

Distinguished member
Forum Supporter
Joined
Oct 1, 2018
Messages
408
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
I just read this blessing posted for a friend who lost her husband to brain cancer. It made me think of everyone who is struggling with the large and small things that ALS throws at us, especially carrying on after the loss of loved ones. Sending love and strength.

Blessing for Night Descending

Night descends if you folded the laundry today.
Night descends if you still could not find the energy for laundry.
Night descends if you do not have laundry to fold, or a home to stay inside.
Night descends if you walked outside and let sunshine ripen on you.
Night descends if you stayed in bed all day.
Night descends if you did not do half of what you intended.
Night descends if you did one tiny thing.
Night descends if you were angry, or impatient, or silent, or laughed when it wasn’t prescribed.
Night descends if you spoke only in tears today.
Night descends if you are lonely, or uncomfortable, or afraid.
Night descends if you are healthy, and if you are full.
Night descends if you are asking unanswerable questions
Or if you are answering the only questions that seem to matter now.
However it comes for you this night, may you find rest and renewal,
Hope for a fresh day,
And for the work of paying attention to yourself
And this still-spinning world.

-by Laura Martin, Assoc. Pastor, Rock Spring Church, Arlington, VA
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,628
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Jersey,

Im late to this, and sending delayed hugs. I’m about 2 months out form the second anniversary and it’s already hitting me. So back to therapy I’ve gone.

This road is tough and sometimes I’m convinced the healing will take as long as the disease took. I’m praying that not the case, that would be way too long. However we will discover each in our own way how to move forward.

it was a year before I could go to the gravesite. I had my kids with me and I nearly ran. DS held me tight and I managed it, but have not been back this year. Maybe on the anniversary again

Sending many hugs to you,
 
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