A Husband and Caregiver’s ‘ALS Experience’

Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.

“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”

He added, “ALS is [an] ugly disease. It slowly takes away the person we saw being able to take care of themselves and enjoy life. The sad thing is…there is no cure. The person who has ALS just slowly wastes away.”

Linda was diagnosed with ALS on April 16, 2012. She passed away less than 14 months later – on June 8, 2013.

“If it wasn’t for God, I couldn’t have made it through,” Ronnie said. “I pray every day for all the caregivers and have the utmost respect for them.”

He wrote “ALS Experience” after Linda’s death.

ALS Experience
By Ronnie Edwards

I reach for her and she’s not there.
Missing her is almost too much to bear.
For 20 years, she was a big part of my life,
My best friend, confidante, and loving wife.

It tore me apart as I watched her die.
All the time asking, ‘God, Why?’
She went from being vibrant and active,
To needing help with everything just to live.

She still put others before herself,
Praying for them in spite of her ill health.
Even while in great pain, she would still smile.
It made taking care of her really worthwhile.

She was the strongest woman I’ve ever known.
Not once did I ever hear her whine or moan.
As painful as all this had to be,
She was more worried about what it was doing to me.

After I would put her to bed at night,
I’d go to another room, so I could cry out of her sight.
I’ll always remember her last day.
She fell asleep holding my hand, and quietly passed away.

I’ll never forget her till the day I die.
The strength she displayed, I’ll share with pride.
All the lives she touched, I am amazed.
For her to go quietly, I’ll give God the praise.

12 thoughts on “A Husband and Caregiver’s ‘ALS Experience’”

  1. Yes, off course it is the hardest thing anyone can experience to watch a loved one slowly die when you can’t do anything about it. My wife got this in Feb 2012, at 35yrs age . We are married for 9 years and have an 8 years old kid. When diagnosis was made in may last year, I complained to God why us , but then I prayed if she could have a slower progression, as it is extremely variable in ALS. But God was not kind enough and she had a very rapid progression, is on home ventilation since july this year, with only lips and eye movements left.
    When I read your post, I could relate each and every word you penned down , to me.We lived those nine years to the best, we loved alot , we rarely fought . Even now we spend our time cherishing those memories. She always has one question whenever she gets upset, why me.
    What I regret is , many things which we wanted to do we kept on postponing, through out those 9 years, thinking that we have enough time. Now thinking retrospectively, I think, if you have to do something,do it there and then, dont waiy. I might not have complained to.God , had she developed it after say 10 years. Even today I think if she recovers , by a miracle, life would be 1000 times more beautiful .


  2. My heart breaks for you and your family,💔 and any other caregivers and ALS patients out there. Your words describe exactly what we are living with our wonderful beautiful son. Brian is 49 years old and before this disease took over his body, he was a vibrant and fun loving man. Absolutely never does he complain now as we tend to all his needs. We are living a nightmare watching this beautiful man succumb to this deadly monster they call ALS. All we can do is pray, and let God lead the way.
    So sorry for the loss of your beautiful wife. At least we know she is free from a body that held her captive.
    God’s blessings upon you.


  3. My heart goes out to you, I lost my husband to ALS 6-1/2 years ago and it broke my heart. He was the love of my life, God was with him till the end and he too went peacefully in his sleep.
    He went a week after he was diagnosed, he had been diagnosed COPD but he would tell me he did not agree, it was something else, later on he was diagnosed with ALS and died a week later. God spared him from what was to come. I crushed but thankful that he did not suffer worst.


  4. Ron your wife was a beautiful woman, a wonderful person. She was loved by her family and friends. Most of all she was loved by you.

    Many people never experience love or have any luck with romance. Linda did she had you. You gave her the greatest gift anyone can receive..love..


  5. How beautiful you have put into words the heartfelt memory of your loving wife. I just learned today from my Bishop’s wife that he had ALS and he passed and went to be with the Lord on last Tuesday. She told us what it was and I just wanted to read more about it. Thank you for sharing your memory. May God bless and keep you is my prayer.


  6. My heart goes out to you. I too had to take care of my wife of 38 years. She was diagnosed in April last year but by that time she was displaying serious mobility issues already. Jenny passed away on New Year’s Eve 2017/18. I too would go outside to hide my weeping after putting her to bed. I’m so full of the whole nightmare. I grieve every day.


  7. Thank you for this lovely story and poem, Ronnie. I lost my Brother, Mike to ALS
    3 years ago after his tough battle with it for 2+ years. Part of my Heart went with my Brother as he passed. I miss him every day. He was a wonderful Brother, Father, Husband and fishing boat Captain. His loss has been a great one in my Life. Thank you again for your words as I could relate to many of them. Blessings to You and Your Family and I Pray for the day that a cure is found for this terrible disease.
    Best Regards, Jeanne


  8. That was so beautiful. I know your beautiful wife looks to you still to this very moment. ALS cure is in the horizon. She was lucky to have you.


  9. So sorry for your loss Ronnie. I just saw the blog. My son who’s name was Ronnie also passed from als four years ago. He had it for 3 years. Like you said, they just waste away. He was in pain but really never complained except when he got a bedsore. He still kept his sense of humor till the end. I didn’t want to believe he was going to die and denied it to myself. I just kept believing he was going to live with it and maybe there would be a cure. I believe God helped me get through it and people praying for me at church. May God bless you.


  10. I totally agree as my husband fought this horrible disease at the same time frame. It’s so sad that you can’t do anything except be there and wonder if that was enough. I can say that he is now in a better place. God bless and please look over all.


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