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A Journey Through Fire: ALS - Memoir of a caregiver
This is a story about a journey...a journey not anticipated or planned, but a reluctant, miserable voyage brought on by a devastating illness. This unforeseen life journey became a battle against ignorance, uncertainity, fear, despair, misery and suffering, and death. For me as a Christian, it became a ceaseless effort...even a struggle, to understand God's purpose for terrible trials, and to find refuge in His promises.
Life changed forever when the doctor diagnosed my husband with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease in January of 2003. Extreme tragedy, dread, and grief surrounded us as the disease stalked him unmercifully. It finally defeated him with death after long months of torture. There were many challenges during our journey. We struggled to accept the inevitable, understand the disease and its consequences, to find appropriate medical care and treatment, and the daunting task to figure out how to access the many other resources, which would be required for his care. The mental, emotional, and heart-wrenching consequences of grief, despair, fear, helplessness, and then hopelessness were the greatest challenges of all.
At the time of my husband's diagnosis, I had been a practicing R.N for forty-five years. I had cared for many people with serious or terminal illnesses, and suffering and death were not foreign to me. However, I knew little about ALS. I recalled from nursing school that it is a rather rare disease with no known cure. Other aspects and facts of the disease had long faded from memory.
As I began the search for information, it became clear very quickly that this was no ordinary disease, but an exceedingly ruthless and deadly affliction. The care for someone with an illness such as this would be complicated. There was a great deal to learn, and I realized that I was not at all prepared. During my daily caregiving efforts, especially as the illness progressed, I had my nursing education, experience, and skills to assist me. I wondered how someone with no skills or medical background would ever be able to cope with the enormity of it all. I came to believe that if God showed me the way, lessons learned could equip me to help others who may take a similar journey.
Life changed forever when the doctor diagnosed my husband with Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease in January of 2003. Extreme tragedy, dread, and grief surrounded us as the disease stalked him unmercifully. It finally defeated him with death after long months of torture. There were many challenges during our journey. We struggled to accept the inevitable, understand the disease and its consequences, to find appropriate medical care and treatment, and the daunting task to figure out how to access the many other resources, which would be required for his care. The mental, emotional, and heart-wrenching consequences of grief, despair, fear, helplessness, and then hopelessness were the greatest challenges of all.
At the time of my husband's diagnosis, I had been a practicing R.N for forty-five years. I had cared for many people with serious or terminal illnesses, and suffering and death were not foreign to me. However, I knew little about ALS. I recalled from nursing school that it is a rather rare disease with no known cure. Other aspects and facts of the disease had long faded from memory.
As I began the search for information, it became clear very quickly that this was no ordinary disease, but an exceedingly ruthless and deadly affliction. The care for someone with an illness such as this would be complicated. There was a great deal to learn, and I realized that I was not at all prepared. During my daily caregiving efforts, especially as the illness progressed, I had my nursing education, experience, and skills to assist me. I wondered how someone with no skills or medical background would ever be able to cope with the enormity of it all. I came to believe that if God showed me the way, lessons learned could equip me to help others who may take a similar journey.
295 pages, Kindle Edition
First published May 2, 2011
5 people are currently reading
38 people want to read
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Displaying 1 - 7 of 7 reviews
July 1, 2025
I was diagnosed with bulbar ALS in May 2024. I live in Texas, and I’m 68 years old. I take Nudexta medication to help with the emotional outbursts of laughing and crying. The weakness, slurred speech, and muscle loss progressed quickly. Mobility has been an issue since Dec 26, when I fell and broke my hip, and although I made small strides at first, I felt like my life had been placed on a countdown, as there was no known cure other than the prescription of riluzole medications, vitamins, and therapies. As the disease progressed, my symptoms worsened. With my neurologist's guidance we decided to try other approaches and started the ALS/MND treatment, and it changed everything. Within 5 months, I noticed more strength in my limbs, clearer speech, and I have stopped using feeding tubes. I’m starting to learn how to walk again & I now sleep better. This ALS/MND treatment program gave me back control and hope. we got the treatment from uinehealthcentre. net This is a game changer for people with ALS.
February 1, 2025
My husband was diagnosed August 2022. It was hard and I cry daily but not in front of him unless we cry together. He couldn’t find anything to give him happiness or hope. We have been focusing on our faith. He was only losing his voice before we made the decision to try different medications, which significantly enhanced his condition. He received the ALS/MND treatment for his ALS approximately four months ago; since then, he has stopped using a feeding tube, speech is getting better by the day, sleeps well, works out frequently. I’m surprised a lot of CALs, and their PALS haven’t heard of it, google uinehealthcentre. com. My husband has become very active
August 17, 2019
Not quite what I expected. In some ways it was a diary of medical ills mixed with happier memories of good times. Scriptural references in every chapter which probably helped the author cope with her challenges.
September 25, 2016
What makes this book stand out among hundreds of others about serious illnesses is that the author is an RN with many years of experience in health care. Yet when her husband was diagnosed with ALS she found that she knew little about the disease and that the doctors she consulted didn't know much more than she did.
Unfortunately this is not an uncommon experience. American medical care is geared toward the relief of acute illnesses for which a clinically-tested cure is available. Develop a degenerative disease for which there is no reliable cure and you'll be seeing the backs of white coats getting away from you as quickly as possible.
The author's husband was "typical" in that he was middle-aged at the onset of ALS and he died less than two years later. Watching someone die of a degenerative disease is gut-wrenching. Her husband was an energetic man who, as a fire-fighter, had depended on his physical fitness to protect himself and others. He should have enjoyed many more years of active life with his wife and sons. Her story of the trip his fellow fire fighters took with him is one of the most touching things I've ever read. I'm sure that none of those men will ever forget it and it is a lesson for all of us to enjoy our friends and loved ones while we can.
I learned a great deal about ALS from this book, although it's a story which speaks to any caregiver. The author is a devout Christian and she frames her experience within her beliefs as is evident from the cover art and the book description. If you find this offensive, you should probably skip this book.
I personally think there's much here that is of value regardless of your religious beliefs. As Baby Boomers age, many of us have been in similar situations or will be in the near future. This book is well-written and informative and the author has performed a service by sharing her story.
Unfortunately this is not an uncommon experience. American medical care is geared toward the relief of acute illnesses for which a clinically-tested cure is available. Develop a degenerative disease for which there is no reliable cure and you'll be seeing the backs of white coats getting away from you as quickly as possible.
The author's husband was "typical" in that he was middle-aged at the onset of ALS and he died less than two years later. Watching someone die of a degenerative disease is gut-wrenching. Her husband was an energetic man who, as a fire-fighter, had depended on his physical fitness to protect himself and others. He should have enjoyed many more years of active life with his wife and sons. Her story of the trip his fellow fire fighters took with him is one of the most touching things I've ever read. I'm sure that none of those men will ever forget it and it is a lesson for all of us to enjoy our friends and loved ones while we can.
I learned a great deal about ALS from this book, although it's a story which speaks to any caregiver. The author is a devout Christian and she frames her experience within her beliefs as is evident from the cover art and the book description. If you find this offensive, you should probably skip this book.
I personally think there's much here that is of value regardless of your religious beliefs. As Baby Boomers age, many of us have been in similar situations or will be in the near future. This book is well-written and informative and the author has performed a service by sharing her story.
February 5, 2015
ALS
Good book. She went through a lot as caregiver. Part of her strength came from a deep faith and she includes a good number of psalms and words of comfort from God.
I could never keep my faith as she did through her ordeals (too many to list here). Hard to relate to her unwavering faith because I simply cannot believe God would do this to anyone.
Good book. She went through a lot as caregiver. Part of her strength came from a deep faith and she includes a good number of psalms and words of comfort from God.
I could never keep my faith as she did through her ordeals (too many to list here). Hard to relate to her unwavering faith because I simply cannot believe God would do this to anyone.
June 5, 2012
Interesting read from a caretaker (who was a nurse) as her one time firefighter husband succumbs to ALS. The wife is also battling cancer herself. I read this due to having had 3 different people I knew of with this dreadful disease.
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January 28, 2014Very good book
being person with ALS I worry about my husband and what he going through this great book for caregiver and person Faith.
being person with ALS I worry about my husband and what he going through this great book for caregiver and person Faith.
Displaying 1 - 7 of 7 reviews