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ises

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Aug 11, 2012
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Country
US
State
MI
City
Grand Rapids
Hello everyone.

I feel a little strange posting this. I've only just joined this forum, although my journey with my husband and ALS ended 3 months ago. Seems a little backward. I guess I'm looking for others who can help me figure out what the hell just happened here.

A little background: My husband was diagnosed in April of 2010, after a couple months of symptoms. Bulbar onset. We had just celebrated our 25th anniversary. He did ok the first year, and we so hoped for a slow progression.

But beginning last summer, the progression moved more quickly, and from the end of January of this year until the end in May, we were in free-fall. Our journey ended May 15.

I'm still trying to figure out this new normal. I was his primary cals until February, when we hired a terrific gal for while I was at work. My life consisted of care-giving, work (part-time), parenting our sons (14 & 16), and keeping the house running.

I'm still trying to cope with how things got so bad, so fast. We'd had a great week, the week before, going to school events for the boys, an ALS clinic visit (NO red flags), shopping. The next week, he was gone. The DC stated respiratory failure, onset of 24 hours. I'm still considering talking to the social worker at our ALS clinic, but she's a bit of a ditz.

We are Christ followers, so I believe he is now healed and living without ALS, but I still grieve the loss. He was my soul mate and the love of my life for 27 wonderful years. And only 51 years old.

I am acquainted with other widows, but none have experienced ALS. There is a survivors lunch here where I live at the end of every month, but I haven't gone. I thought I'd look here first.

Thank you to anyone who may read this, for just reading it. I bet you understand.
 
ises, I'm terribly sorry you recently lost your dear husband. You are absolutely correct that unless someone has experienced living with ALS, they cannot relate.

Welcome to the forum. I hope we can provide a little support for you as you venture on your new journey. Hang in there!
 
Welcome Ises. I'm sorry for your loss. We'll be here for you.
 
There is really no way to make sense of what you have been through. Just before I read your post, I was sitting on my patio trying to figure out how I managed during my husband Terry's battle with ALS. My children were 15 and 18 when he was diagnosed. Like your husband's death, my husband's death was completely unexpected. There were no red flags. My husband was only 50 years old. Next week will mark the one year anniversary of Terry's death. Unbelievable. I feel like I haven't progressed one inch in my grief. I've been to 3 grief recovery classes, so I have the tools. Like you, I have a strong faith. I think it will just take time.

My thoughts are with you.
 
Hello and welcome.

Gosh - you must feel like you're coming out the other end of a tsunami. I am so sorry that you're without your best friend and I cannot imagine how you must feel. Since the disease took him so fast, I'm thinking you likely never had the chance to take a breath before being sucked under by the fierce current - and now you are just coming up for air and still treading water.

I hope that you will find some solace here- the CALS I have met in this forum are unbelievably generous with their time and sage advice - no matter how busy and hectic things are for them. As for me - I will remember you in my prayers and wish you courage during this most difficult time. I have no doubt you will reach the shore!
 
We do understand here. There are really great people who have all walked this path. My journey with my husbands ALS was super fast, we got 11 months. I was his only caregiver and things were super fast and there was always an emergency. I am 2 days shy of 9 months since my husband passed away, and I struggle everyday. I have my ups and downs and I try everyday to make since of what happened. Take to heart that should you ever need a ear, someone to vent to, cry to, exchange anger with..... we are hear.
 
So sorry that you are joining our little band of ALS widows and widowers. I am sad every day but I try to remember all the good days that we had before and I know that there are so many good days to come. Four months since he passed but who's counting. Me of course.

We didn't even make the one year mark for our second opinion from the ALS Clinic neurologist but like so many before we knew something was seriously wrong even before we got the confirmed diagnosis. Scott even self diagnosed himself from reading on the Internet. Then he stopped reading and I took up the research. This Forum has been so helpful.

Sorry that you're here but we do understand completely.

Sometimes you feel like you're underwater like with a panic attack and then other days go reasonably well. So go with the good days and I hope you have one soon.
 
Thank you all for taking the time to read my story and for your kind words. I think I've found a place to begin healing.
 
I just wanted to say hey, and sorry for the loss of your husband. Even though I am not a widower, I too have experienced loss because of ALS. My mom passed away in 2004. Jesus is what got us through. I know you have a lot on your plate as you are adjusting to so many new things life will throw at you. Lean on Jesus through this time. May He give you the grace, peace, mercy, and His strength as you walk forward:) Glad you came here.....many good people here. ~ Judy
 
I understand. You have found friends here on this forum. Sending you a hug.......did you feel it? x
 
hello fellow Michigander, you are not alone. Sending you a big bear hug and a pat on the back. Just take one day at a time, It is all anyone can do. Find some joy in each day, doesn't have to be big, a butterfly on a flower, pride in your sons, a good hot strong cup of coffee.
Penny
 
I'm so sorry for your loss.
You'll find a wonderful group of CALS here that will understand exactly what you've been through
 
Thank you, Penny. I'm just down the highway from you!
 
Ises,
Welcome to the forum. I hope you find peace and healing here///

Jen
 
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