• Memoriam wall
    • We've created a memoriam wall to remember our friends
    • If you know someone that battled ALS, please add them here

Lost my loved one and first attempts at moving on

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
127
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
I wanted to let you know that my loved one died Tuesday June 11. He was diagnosed February 2018 and lived about 16 months with his diagnosis. He never fought his ALS but quietly accepted it and made the best out of it, loving the comfort and mobility his wheelchair gave him and making jokes until the very end. He gracefully accepted each of the very many losses and moved on to the next stage. He predicted what would come next and was usually right. He did not want to extend his life with this disease. In the very end he was frustrated that it took so long. It was hard on him.

For a long time he had been sleeping in a recliner in seated position. He did not use trilogy much, except in the last few weeks when he experienced more shortness of breath. Up until the last few days he used his eyegaze device and most often would type complete sentences - punctuation included and would not spare with 'Thank yous". He did not want feeding tube and was clear that he simply wanted to die in the end. He became very weak as he could barely swallow any longer and then lost that too.

He was on hospice for about 5 weeks. We had a really good hospice nurse with whom he had much fun and comfort.

For me it's going OK. Losing him is still so fresh. I miss him very much. The healthy person. I don't miss the end. For some reason I don't sleep well at all. I have a huge sleep deficit. I am cleaning up in the house, meet with friends, and today I went to a concert by myself in a close by town. We used to go there every year on Father's Day. Today I went by myself and it was surprisingly OK. I started working in the yard again. There is much to do. My dog has come by for visits. Soon I will get him back full time. He will miss his playmates.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,426
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Regina, he was lucky to have you at his side as he found peace.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,665
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Oh Regina I'm so very sorry for your loss. Don't be at all surprised how your body and mind react - do whatever feels right, because nothing just now is even close to ok. Many hugs 💜
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,413
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Regina I am so very sorry for your loss. He is flying free and your love for him shone through all your posts. Grief is a funny thing. Some days you will feel like “I got this’ and others you’ll be a puddle of tears or just quite melancholy. All of it is normal, all of it is ok. Just be kind to yourself and do what feel right.

Hugging you long distance. ❤
 

sassy

Active member
Joined
Apr 22, 2018
Messages
60
Reason
CALS
Diagnosis
02/2018
Country
us
State
Massachusetts
Very sorry to hear. Hugs to you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,477
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am very sorry Regina. You were an awesome care partner in every way. You allowed him to choose his path and I know that was not easy for you.

I am glad he is free

wishing you strength and comfort as you begin to heal
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
438
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
I am so sorry for your loss. You gave him such a wonderful gift of accepting and supporting his choice of how he wanted to do his journey. Wishing you peace and comfort, Kate
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
156
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
Regina, we are so sorry for your loss.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
528
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
So sorry for your loss, Regina. I wish you peace as you move forward.
 

nona

Active member
Joined
Oct 1, 2018
Messages
91
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
I am so sorry for what you have gone through and are enduring now. Sleep will come. Be gentle with yourself as you were for him. Sending hugs.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,263
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Regina, I am so sorry for your loss. I hope you can find healing in the everyday and mundane things you are occupying your time with and am happy your dog will be coming home to you soon. While he may miss his playmates, I bet he'll be absolutely overjoyed to be with you. I wish you healing and good sleep when you are able.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,534
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
So sorry for your loss!
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,297
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
I'm so sorry, Regina. You did everything he asked and that is the only thing that counts. May he fly free and may you grief eventually be replaced by memories of the good times you shared.
 
Top