Justamom's Story

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justamom700

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Joined
Jun 6, 2016
Messages
10
Reason
Lost a loved one
Diagnosis
03/2016
Country
US
State
IN
City
midwest
I never post a thing, I have followed all of you these last few years. My husband passed January 2019. I comment often to my family and friends how,”a handful of women on a forum I follow give me faith, comfort,and sanity!” Thanks for supporting those of us that are out here, but quiet. So similar , with kids, jobs, and houses. My man was a keeper and wow, this really happened?! I appreciate all of you and your willingness to share the daily. Best to all!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,149
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I am very sorry about your husband, mom. Glad you have gotten something from what we say here. Chime in yourself, any time!

Best,
Laurie
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Just - so happy you made yourself known. I’m glad I could be of help. So sorry about your loss. Hugs
 

Lkaibel

Forum Supporter
Very helpful member
Joined
May 9, 2016
Messages
1,356
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
Just I’m sorry to see another join us as a CALS widow but so glad you are saying hello. Thank you and know you are never alone.
 

justamom700

Forum Supporter
Member
Joined
Jun 6, 2016
Messages
10
Reason
Lost a loved one
Diagnosis
03/2016
Country
US
State
IN
City
midwest
Thanks ladies, I have laughed, cried, and mourned along with you in so many ways . A thoughtful post describing my journey will be forthcoming. Pulling my thoughts together. I am saddened everytime someone is diagnosed. My name is Katie :)
 

justamom700

Forum Supporter
Member
Joined
Jun 6, 2016
Messages
10
Reason
Lost a loved one
Diagnosis
03/2016
Country
US
State
IN
City
midwest
My PALS had bulbar onset, symptoms started 5 years ago. He said he felt like he sounded drunk when he spoke . As the year progressed others agreed. In the spring we started going to a voice clinic for botox injections into his vocal chords. There was no resolve. We found ourselves at Mayo clinic by late summer and their summation was, “ potentially ALS”, we returned to Mayo 6 months later and the diagnoses was confirmed, and we weren’t surprised.

Quarterly visits began at our state’s ALS clinic, he retired from his work, and I discovered the ALS forum. I was in denial, all of this horror wasn’t possibly going to happen to my 260lb PALS?!!? He began using a Trilogy at night time only and was sustaining well. His voice continued to decline and his grip was weakening but overall he sustained. We traveled and he went on trips with our boys, all young adults, and his family and his friends. The last time he spoke my name properly was 2015, the last time he spoke at all escapes my memory. Thankfully, he was very fluent with a text/speech app, and if I heard the automated voice today I am sure I would think it was him.

By the fall of 2017 he had lost 70 pounds and was really struggling to eat or drink much of anything. We opted for a g-tube and the procedure was successful although from that day forward he would wear his trilogy 24/7, the anesthesia really took something from him… or maybe, in the way ALS creeps along, it was the day that was going to happen anyway. He leveled for the better part of 2018, but his decline in all areas was becoming more evident.

The last time he left the house was in November of 2018 and we started hospice. He had wanted a vent, but with his decline coming swifter he changed his mine. He didn’t’ think he would become so dependent on others for his basic needs so quickly. Selfishly, I was thankful he changed his mind about the vent. I was at the end of my rope and a kind of exhausted that was worse than raising babies. In December he fell two or three times and was non ambulatory except for to and from bed and bathroom, all with assistance. All along we didn’t want him to go to the hospital, I vowed to keep him home. We had private care coming in to the house any time I was working and he was rarely left alone.

In late January he was doing as well as we could expect and then he swiped on his phone app, “call Hospice I am having trouble breathing”, he had pneumonia. Our children and family and friends sat vigil with him for 4 days, and he passed. As you all have commented—Wow, that really happened?- I was 23 when we got married, now I am 55. I know you get it, I know you understand. Peace to all of yours and thanks for helping me make it to next . Katie
 
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Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
611
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Hi Katie! Glad you decided to join us. Sorry to hear your story.

My DH was a "keeper" too. I just lost him in September. These days all I can do is think "Did all this really happen? Why? Shit."
 

MVFinVA

Distinguished member
Joined
Sep 5, 2017
Messages
116
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
VA
City
S
Glad to hear from you Katie, but sorry we all have this journey in common! It is so good to have a place to "talk" where we all understand all the background and emotion. I have very loving and empathetic friends, but NOBODY understands like another CALS!

My PALS, Dave, was definitely a keeper too. I miss him every day, but I wouldn't want him back they way he was.
 

justamom700

Forum Supporter
Member
Joined
Jun 6, 2016
Messages
10
Reason
Lost a loved one
Diagnosis
03/2016
Country
US
State
IN
City
midwest
ALS creates so many .. I didn't know that would be the last time he would wear a tie, drive the car, leave the house etc etc. 10 months in and I can barely remember all we went through. He is free, we are free and yet it is still awful. It struck me when someone said the 2nd year will be harder. Yeowww! haha. It makes sense to me. As this 1st year winds down I realize how much time has been spent making sure papers are in order and that everyone else is doing " ok". Maybe the 2nd year is a chance for me to see if I am doing "ok".. hmmm
 
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