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Dance Me to the End: Ten Months and Ten Days with ALS
A profoundly honest and intensely personal story of a woman who cares for her husband after the devastating terminal diagnosis of ALS.
Marty, age 57, was given a preliminary diagnosis of ALS by his family doctor. Seven weeks later, the diagnosis was confirmed by a neurologist. Ten months and ten days later, Marty passed away.
From day one, Alison, Marty’s spouse of over twenty-five years, kept a journal as a way to navigate the overwhelming state of her mind and soul. Soon the rawness of her words harmonized to tell the story of Marty’s diagnosis, illness, and decline. Her journal became a chronicle of caregiving as well as an emotional exploration of the tensions between the intuitive and the pragmatic, the logical and illogical, and the all-consuming demands of being both spouse and nurse. Divided into short pieces, some of which reads as free verse, Alison’s words are at times profoundly intense and painfully private.
The composition of the intricate notes of a life in its final movements includes another stanza of the journal that became Dance Me to the the guiding of children grappling with the imminent loss of a parent, and the shifting roles of family, friends, and community—all of which add their own complex rhythms.
Dance Me to the End is an evocative memoir about the emotional impact of witnessing a loved one suffer from a neurological, degenerative, and terminal disease. This is a detailed account of grief, shock and pain coexisting with the levity, laughter and love shared with her husband and sons in those final months of Marty's life.
Marty, age 57, was given a preliminary diagnosis of ALS by his family doctor. Seven weeks later, the diagnosis was confirmed by a neurologist. Ten months and ten days later, Marty passed away.
From day one, Alison, Marty’s spouse of over twenty-five years, kept a journal as a way to navigate the overwhelming state of her mind and soul. Soon the rawness of her words harmonized to tell the story of Marty’s diagnosis, illness, and decline. Her journal became a chronicle of caregiving as well as an emotional exploration of the tensions between the intuitive and the pragmatic, the logical and illogical, and the all-consuming demands of being both spouse and nurse. Divided into short pieces, some of which reads as free verse, Alison’s words are at times profoundly intense and painfully private.
The composition of the intricate notes of a life in its final movements includes another stanza of the journal that became Dance Me to the the guiding of children grappling with the imminent loss of a parent, and the shifting roles of family, friends, and community—all of which add their own complex rhythms.
Dance Me to the End is an evocative memoir about the emotional impact of witnessing a loved one suffer from a neurological, degenerative, and terminal disease. This is a detailed account of grief, shock and pain coexisting with the levity, laughter and love shared with her husband and sons in those final months of Marty's life.
320 pages, Kindle Edition
First published October 8, 2019
23 people are currently reading
174 people want to read
About the author
Alison Acheson
16 books27 followersI live and write in the east side of Vancouver, Canada.
I write for all ages and in multiple forms, from picturebooks, MG and YA novels, to memoir and adult novels and short fiction. I have a Substack newsletter, The Unschool for Writers.
https://unschoolforwriters.substack.com/
I write for all ages and in multiple forms, from picturebooks, MG and YA novels, to memoir and adult novels and short fiction. I have a Substack newsletter, The Unschool for Writers.
https://unschoolforwriters.substack.com/
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Displaying 1 - 30 of 40 reviews
December 15, 2019
Alison Acheson’s Dance Me to the End: Ten Months and Ten Days with ALS, is a deeply moving account of the horror of disease and the beauty of marriage. Her narrative explores the “sustenance left in . . . ancient stories” (72) and how they can permeate to the bone marrow and help one persevere into the depths of suffering. It’s a book about what a good marriage can be in this broken world.
Acheson’s central metaphor is the biblical story of Martha and Mary—symbols of the active and contemplative spiritual lives. And the overarching framework is the mystery of grace. It is a woven narrative: like a tapestry of “silver fabric . . . [woven] between raw fingers” (312).
It’s also a book about how life catches us off guard and slams reality at us: “After years of struggling to make ends meet, growing my sons, growing my self—suddenly all the pieces seemed to have come together. Three weeks before Marty’s diagnosis, I’d told him how much I loved my fiftieth year, how it could go on without end, and I’d be happy” (155). And if life can hit us in these extreme ways, the author reflects upon the significance of “simple happiness” (115), and the need to prepare in advance: “[I]t is important that we go out and glean our bits, bring them in, so that when the time comes, we have what we need to get through. . . . to gather together elements of our world that resonate with us, that feel to have the capacity to build and strengthen us, to do this in healthy times, will surely grow and feed us in times that are not healthy” (294). And also to further this goal: “We collect experience, we connect with others, we build laughter and soul and home—so that when we need a foundation and a shelter, it will be there for us. But if it hasn’t been built, the sand under us will give way” (295).
The book is suffused with sincerity; it is authentic, realistic, spiritual, serious, romantic, humorous, with touches of both physical and emotional beauty. It contains numerous sentences worthy of highlighting, but here are a few of my favorites:
“White Rock, a beach town with hilly streets pushing up from the water . . . ” (38).
“It was dusk, and the sky had that luminous indigo teal to it . . . ” (41).
“I found myself folding away summer dresses. I’ve always loved summer dresses, cooling, feminine” (110).
“There was a window in the ensuite bathroom, and immediately outside this window was a weeping birch. In the summer, the glass was filled with delicious little green leaves. In the fall, the leaves were rattly orange” (162).
And finally this classic touch:
“Ten minutes later, Jesus [her son’s pet snail] was trolling the edges of the bowl, antennae up and happy as shit. Returned from the dead” (193).
Acheson’s central metaphor is the biblical story of Martha and Mary—symbols of the active and contemplative spiritual lives. And the overarching framework is the mystery of grace. It is a woven narrative: like a tapestry of “silver fabric . . . [woven] between raw fingers” (312).
It’s also a book about how life catches us off guard and slams reality at us: “After years of struggling to make ends meet, growing my sons, growing my self—suddenly all the pieces seemed to have come together. Three weeks before Marty’s diagnosis, I’d told him how much I loved my fiftieth year, how it could go on without end, and I’d be happy” (155). And if life can hit us in these extreme ways, the author reflects upon the significance of “simple happiness” (115), and the need to prepare in advance: “[I]t is important that we go out and glean our bits, bring them in, so that when the time comes, we have what we need to get through. . . . to gather together elements of our world that resonate with us, that feel to have the capacity to build and strengthen us, to do this in healthy times, will surely grow and feed us in times that are not healthy” (294). And also to further this goal: “We collect experience, we connect with others, we build laughter and soul and home—so that when we need a foundation and a shelter, it will be there for us. But if it hasn’t been built, the sand under us will give way” (295).
The book is suffused with sincerity; it is authentic, realistic, spiritual, serious, romantic, humorous, with touches of both physical and emotional beauty. It contains numerous sentences worthy of highlighting, but here are a few of my favorites:
“White Rock, a beach town with hilly streets pushing up from the water . . . ” (38).
“It was dusk, and the sky had that luminous indigo teal to it . . . ” (41).
“I found myself folding away summer dresses. I’ve always loved summer dresses, cooling, feminine” (110).
“There was a window in the ensuite bathroom, and immediately outside this window was a weeping birch. In the summer, the glass was filled with delicious little green leaves. In the fall, the leaves were rattly orange” (162).
And finally this classic touch:
“Ten minutes later, Jesus [her son’s pet snail] was trolling the edges of the bowl, antennae up and happy as shit. Returned from the dead” (193).
May 12, 2020
Powerful, honest, eloquent, compelling, at times humorous and sometimes sad. A story for anyone who has lost a loved one though death or is caring for someone who is dying. We have no rehearsal for this final journey and it is easy to find yourself adrift. Acheson's writing is evocative, her words weave a story of the importance of connection and unconditional love. I laughed, I cried, but I gained a deep sense of peace from her words. Dance Me to the End is affirming and relatable.
May 26, 2022
Originally posted on my blog: Nonstop Reader.
Dance Me to the End: Ten Months and Ten Days with ALS is a beautifully eloquent and honest memoir of Alison Acheson's experiences with ALS after her husband's diagnosis. Released in 2019, it's 320 pages and is available in paperback, audio, and ebook formats.
This is such a well written and touching book. There were so many times I stopped the book to just think about something the author had said. I find myself, some weeks after the read, still thinking about it. After a horrific, terminal diagnosis for her husband of ALS (Lou Gehrig's disease) she writes not only about the anger and confusion and shock, but also about the love of family and sometimes honest humour to be gathered.
The author is a creative writing teacher, and it does show in the writerly language and turns of phrase. I enjoyed her competence with the written word. Some readers might prefer a more pared down style, but I thought the sensitively nuanced writing absolutely suited the subject.
The unabridged audiobook is due out 30th May 2022 and has a run time of 7 hours and 21 minutes. It's capably narrated by Ellen Dubin. She has a warm alto voice which is pleasant to listen to. Sound and production quality are high throughout the recording.
This would make a good selection for public library acquisition, as well as for readers who enjoy memoir/biography.
Four and a half stars.
Disclosure: I received an ARC at no cost from the author/publisher for review purposes.
Dance Me to the End: Ten Months and Ten Days with ALS is a beautifully eloquent and honest memoir of Alison Acheson's experiences with ALS after her husband's diagnosis. Released in 2019, it's 320 pages and is available in paperback, audio, and ebook formats.
This is such a well written and touching book. There were so many times I stopped the book to just think about something the author had said. I find myself, some weeks after the read, still thinking about it. After a horrific, terminal diagnosis for her husband of ALS (Lou Gehrig's disease) she writes not only about the anger and confusion and shock, but also about the love of family and sometimes honest humour to be gathered.
The author is a creative writing teacher, and it does show in the writerly language and turns of phrase. I enjoyed her competence with the written word. Some readers might prefer a more pared down style, but I thought the sensitively nuanced writing absolutely suited the subject.
The unabridged audiobook is due out 30th May 2022 and has a run time of 7 hours and 21 minutes. It's capably narrated by Ellen Dubin. She has a warm alto voice which is pleasant to listen to. Sound and production quality are high throughout the recording.
This would make a good selection for public library acquisition, as well as for readers who enjoy memoir/biography.
Four and a half stars.
Disclosure: I received an ARC at no cost from the author/publisher for review purposes.
June 16, 2022
Herkenbaar:
"One can need to be, and feel, many things at one time, all the time. I was learning that that is what, in part, causes the exhaustion of caregiving."
Anticipatory grief
Indulge in normalcy
"Is acceptance the same as lack-of-hope? Is not fighting giving up?"
"In general, it wasn't the suggestions themselves that were irritating, but the insistence, evidenced by the repeating of the idea, and the tone of having discovered something akin to cure, when in fact the suggestions were not helpful, or seemed not to be based in our immediate reality."
"I reach into the fridge for some supplement, wonder if there is anything else at all that we could be doing, the thought is always there, always torturing, even though I know, IknowIknowIknow, there is nothing."
"One can need to be, and feel, many things at one time, all the time. I was learning that that is what, in part, causes the exhaustion of caregiving."
Anticipatory grief
Indulge in normalcy
"Is acceptance the same as lack-of-hope? Is not fighting giving up?"
"In general, it wasn't the suggestions themselves that were irritating, but the insistence, evidenced by the repeating of the idea, and the tone of having discovered something akin to cure, when in fact the suggestions were not helpful, or seemed not to be based in our immediate reality."
"I reach into the fridge for some supplement, wonder if there is anything else at all that we could be doing, the thought is always there, always torturing, even though I know, IknowIknowIknow, there is nothing."
January 27, 2020
What a beautiful, heartbreaking, and yet heart-building book. In her poetic and yet also practical way, Acheson allows the reader to witness the life of a loving and conflicted caregiver. For anyone who's been in the role, there are so many, "yes, that!" moments. For anyone who has simply loved someone and cared for them and wondered what to do when self care and care for others is at odds, this is imminently relatable. So it isn't just a book about caring for someone with terminal illness. It's about the mysterious ways we all pull through challenges, the ways we build self, the ways we connect, and the need for love and care in all things. In a world that's growing more and more isolated, the book spoke to my heart and soul. It made me want to hug everyone I know and say thank you more often. So much of care is invisible to those who receive it. Acheson allows us to see. This is no easy read, but Acheson infuses her tale with humour and moments of joy and appreciation. It reminds us to dance.
January 9, 2022
XXXXX
Understatement: being both spouse and nurse to a neurologically-impaired victim is not easy!!
XXXXX
“I [the author] struggled to describe this disease, even to myself. There was both an appalling silence about it—it does silence the person who lives with it—and a violence.
A violence made more fearsome by the silence.”
The above quote (in italics) comes from this powerful, well-written book by Alison Acheson. She is an author and teaches creative writing at the University of British Columbia (located in the province of British Columbia, Canada).
This book is a memoir about the emotional impact on the caregiver of witnessing a loved one suffer from the neurological, degenerative, and terminal disease called Amyotrophic Lateral Sclerosis or ALS. It documents Acheson’s husband’s diagnosis, his illness, and his subsequent decline, and eventual death.
What makes this book so powerful is that it also recounts how the author/caregiver loves and cares for herself under the constant demands of ALS.
This book’s title “Dance Me to the End” comes from the song entitled “Dance Me to the End of Love” by Leonard Cohen.
This book’s subtitle “Ten Months and Ten Days with ALS” refers to the fact that at age 57, the author’s husband was diagnosed with ALS and exactly 10 months & 10 days later, he died from the disease.
This book’s cover (shown above by Good Reads) is interesting. It shows several neurons (nerve cells) found in the central nervous system (brain and spinal cord). ALS is a disease that causes the death of neurons controlling the voluntary muscles. There is no cure.
ALS became well-known in the U.S. in the twentieth century when in the late 1930s it effected baseball player Lou Gehrig (1903 to 1941) and later worldwide following the early 1960s diagnosis of British theoretical physicist Stephen Hawking (1942 to 2018).
Finally, in 2014, videos of the Ice Bucket Challenge went viral on the Internet, increasing public awareness of the condition.
In conclusion, this truly elegant memoir bears both precise and intimate witness to the experience of caring for a loved one with a terminal disease!!!
(2019; 124 chapters; main narrative 310 pages; acknowledgements; about the author [untitled]; permissions)
XXXXX
Understatement: being both spouse and nurse to a neurologically-impaired victim is not easy!!
XXXXX
“I [the author] struggled to describe this disease, even to myself. There was both an appalling silence about it—it does silence the person who lives with it—and a violence.
A violence made more fearsome by the silence.”
The above quote (in italics) comes from this powerful, well-written book by Alison Acheson. She is an author and teaches creative writing at the University of British Columbia (located in the province of British Columbia, Canada).
This book is a memoir about the emotional impact on the caregiver of witnessing a loved one suffer from the neurological, degenerative, and terminal disease called Amyotrophic Lateral Sclerosis or ALS. It documents Acheson’s husband’s diagnosis, his illness, and his subsequent decline, and eventual death.
What makes this book so powerful is that it also recounts how the author/caregiver loves and cares for herself under the constant demands of ALS.
This book’s title “Dance Me to the End” comes from the song entitled “Dance Me to the End of Love” by Leonard Cohen.
This book’s subtitle “Ten Months and Ten Days with ALS” refers to the fact that at age 57, the author’s husband was diagnosed with ALS and exactly 10 months & 10 days later, he died from the disease.
This book’s cover (shown above by Good Reads) is interesting. It shows several neurons (nerve cells) found in the central nervous system (brain and spinal cord). ALS is a disease that causes the death of neurons controlling the voluntary muscles. There is no cure.
ALS became well-known in the U.S. in the twentieth century when in the late 1930s it effected baseball player Lou Gehrig (1903 to 1941) and later worldwide following the early 1960s diagnosis of British theoretical physicist Stephen Hawking (1942 to 2018).
Finally, in 2014, videos of the Ice Bucket Challenge went viral on the Internet, increasing public awareness of the condition.
In conclusion, this truly elegant memoir bears both precise and intimate witness to the experience of caring for a loved one with a terminal disease!!!
(2019; 124 chapters; main narrative 310 pages; acknowledgements; about the author [untitled]; permissions)
XXXXX
October 20, 2019
To quote Glennon Doyle, "brutiful" is the word that comes to mind when I was reading Alison's account of being a caregiver to her husband, Marty. A brutally beautiful memoir.
October 9, 2020
Dance Me to the End: Ten Months and Ten Days with ALS
ALS, full name Amyotrophic Lateral Sclerosis aka Lou Gehrig's Disease. If there is a disease I most fear getting, this one is tied with dementia. The same goes for dread diseases claiming my partner. In this beautifully written book, Alison Acheson gives us her unflinching portrait of a marriage, a busy and often separate family life raising three good boys and working (Acheson is the author of ten books and a creative writing instructor at the University of British Columbia), surrounded by a community of musicians (her husband played and taught music and instigated many live music events). There were, of course, good women friends who rallied round, a good doctor, and notably, stalwart male friends who golfed and did not shy away from the hard facts one of their foursome had to cope with. This is not always the case and I've wondered why some men in particular desert a long-time friend who is very ill at a time when friendship and courage is most needed, as if Alzheimer's or cancer or ALS were somehow contagious. "Never refuse an offer of help,"advised one friend and it is advice we all need to take to heart should we ever be faced with such a blow to our mortality. Such a blow to our happiness, to lose our beloved, to lose what was created in the universe together.
ALS, full name Amyotrophic Lateral Sclerosis aka Lou Gehrig's Disease. If there is a disease I most fear getting, this one is tied with dementia. The same goes for dread diseases claiming my partner. In this beautifully written book, Alison Acheson gives us her unflinching portrait of a marriage, a busy and often separate family life raising three good boys and working (Acheson is the author of ten books and a creative writing instructor at the University of British Columbia), surrounded by a community of musicians (her husband played and taught music and instigated many live music events). There were, of course, good women friends who rallied round, a good doctor, and notably, stalwart male friends who golfed and did not shy away from the hard facts one of their foursome had to cope with. This is not always the case and I've wondered why some men in particular desert a long-time friend who is very ill at a time when friendship and courage is most needed, as if Alzheimer's or cancer or ALS were somehow contagious. "Never refuse an offer of help,"advised one friend and it is advice we all need to take to heart should we ever be faced with such a blow to our mortality. Such a blow to our happiness, to lose our beloved, to lose what was created in the universe together.
This is the story of a spouse who promised she would take care of her husband at home, a promise that guaranteed intimacy, pain, exhaustion, humour, and tears, buckets of tears while handling unwieldy contraptions to improve bathing and toilet access and learning to use feeding and elimination catheters at home. The last months are a blur of sleep deprivation and a painful sinus infection. End of life options and communication about that, and everything else as his cognitive ability and his speech failed, are some of the most powerful paragraphs in the book. When do we know it's time? When are we competent to express that? How can we make that decision for someone when we are not quite sure they mean it? Also thankfully, there is the ritual of tender foot massages, and spiritual contemplation about how lucky this early fifties (in age) couple had, after the busy distracted decades devoted to family and careers, fallen in love again. There is much gratitude for that gift of their latter years of renewed love for each other.
The parable of Martha and Mary is used to excellent literary and psychological effect to contrast inner life and outer behaviours, the practical do-er or the dreamer who listens intently, Martha, the woman of action who marches into the town to find Jesus, in hopes of a miracle to cure Lazarus, her brother, or the sister, Mary, who stays home and grieves alone. There is so much wisdom in this book about suffering, so much grace and such devotion. The author says it best near the end of this particular journey: "Love one another so fiercely it begets its own energy."
March 26, 2020
'Dance Me to the End: Ten Months and Ten Days with ALS' is prose/poetry memoir of caregiving. While the prose and poetry are largely sparse, Acheson is generous in sharing about the ordeal of caring for her husband through his short-lived diagnosis with Amyotrophic Lateral Sclerosis.
As lifespans increase more and more of us end-up caring for a loved one through the end of life and through something other than old age, something that is painful and demeaning. Alison Acheson used the story of New Testament sisters Mary and Martha to ground her journey as a caregiver. As the community precariously offered help she found ways to accept it. And she realized that she was already started to grieve for her husband while he was dying. This didn't stop the struggle through mind-numbing fatigue or feelings at points that she and her husband resented each other, but as she learned there's nothing to stop ALS marching forward once it starts.
I found Alison Acheson's reaction to her husband's death and the funeral home particularly interesting after reading Debi Goodwin's 'A Victory Garden for Trying Times' a few months ago. These were two women whose husbands both had terminal illnesses, but their reactions to death were very different - in fact, my reaction to how they wrote about death were very different. Not necessarily in a bad way, except that I felt sorry for Debi, while I feel Alison has the strength and resiliency to move on with life.
I'd suggest 'Dance Me to the End: Ten Months and Ten Days with ALS' is a book all couples should read. We never know what the future holds, but Alison Acheson will show you the importance of having important conversations about the kind of care you want to have; the kind of care you want to give and the kind of end you want to have. She does this all well finding the humour in everyday life. I'm terribly sad for what happened to her, I'm glad she took the time to share it.
As lifespans increase more and more of us end-up caring for a loved one through the end of life and through something other than old age, something that is painful and demeaning. Alison Acheson used the story of New Testament sisters Mary and Martha to ground her journey as a caregiver. As the community precariously offered help she found ways to accept it. And she realized that she was already started to grieve for her husband while he was dying. This didn't stop the struggle through mind-numbing fatigue or feelings at points that she and her husband resented each other, but as she learned there's nothing to stop ALS marching forward once it starts.
I found Alison Acheson's reaction to her husband's death and the funeral home particularly interesting after reading Debi Goodwin's 'A Victory Garden for Trying Times' a few months ago. These were two women whose husbands both had terminal illnesses, but their reactions to death were very different - in fact, my reaction to how they wrote about death were very different. Not necessarily in a bad way, except that I felt sorry for Debi, while I feel Alison has the strength and resiliency to move on with life.
I'd suggest 'Dance Me to the End: Ten Months and Ten Days with ALS' is a book all couples should read. We never know what the future holds, but Alison Acheson will show you the importance of having important conversations about the kind of care you want to have; the kind of care you want to give and the kind of end you want to have. She does this all well finding the humour in everyday life. I'm terribly sad for what happened to her, I'm glad she took the time to share it.
August 9, 2020
Deeply moving, beautifully written.
In general, it wasn’t the suggestions themselves that were irritating, but the insistence, evidenced by the repeating of the idea, and the tone of having discovered the source of something a kin to a cure, when in fact the suggestions were not helpful, or seem not to be based in our immediate reality.
Even the fact that so few knew much about the disease, and the blanks in their knowledge needed filling. But not by me.
But at that point I was tiring of the bombardment of helpfuls.
I was being utterly irrational, and knew it. But that did not change the irrational thing.
Is acceptance the same as lack of hope? is not fighting giving up?
Why was a goal met less so when it was not shared?
Go gently when life is pushing you.
This was good I told myself. I told myself a lot of things.
Sometimes Martha hovered over me as I hand wrote in my journal. I got the feeling she was fussing over something. Sometimes, in the deep hours, I swore I heard her typing. She couldn’t sit and just do nothing. Couldn’t daydream. No, she was always doing.
Just sit. Be still.
But perhaps her being was all in her doing.
I did my human best. But it was lacking. I knew that. I like to think sleep would’ve helped, that it was that simple. I’ve had a wish to go back to that time, to have a redo, but with sleep, to see what kindness they might’ve been. I hope there would be more.
In general, it wasn’t the suggestions themselves that were irritating, but the insistence, evidenced by the repeating of the idea, and the tone of having discovered the source of something a kin to a cure, when in fact the suggestions were not helpful, or seem not to be based in our immediate reality.
Even the fact that so few knew much about the disease, and the blanks in their knowledge needed filling. But not by me.
But at that point I was tiring of the bombardment of helpfuls.
I was being utterly irrational, and knew it. But that did not change the irrational thing.
Is acceptance the same as lack of hope? is not fighting giving up?
Why was a goal met less so when it was not shared?
Go gently when life is pushing you.
This was good I told myself. I told myself a lot of things.
Sometimes Martha hovered over me as I hand wrote in my journal. I got the feeling she was fussing over something. Sometimes, in the deep hours, I swore I heard her typing. She couldn’t sit and just do nothing. Couldn’t daydream. No, she was always doing.
Just sit. Be still.
But perhaps her being was all in her doing.
I did my human best. But it was lacking. I knew that. I like to think sleep would’ve helped, that it was that simple. I’ve had a wish to go back to that time, to have a redo, but with sleep, to see what kindness they might’ve been. I hope there would be more.
May 31, 2022
This book, Dance Me To the End, is a memoir written by Alison Acheson & beautifully written. It's heartfelt and a tearjerker as she poignantly shared her experiences and emotions about taking care of her husband for 10 months and 10 days after he was diagnosed with ALS. I was especially interested in reading it as I had a friend who died from ALS shortly after she retired from nursing, and I was a caretaker for 4 months for my Mother when she was terminally ill.
Alison and her husband Marty, age 57, had been married for 27 years. She kept a journal about both her & her husband's experiences and emotions regarding his ALS which is intense and painfully private, She draws the reader into a very emotional and sometimes dark place with her detailed writing, but that is the reality of ALS.
What's sad is the lack of educated medical care. For example, one nurse who came to the home knew nothing about ALS. Two days after her husband, died, and she needed to return medical equipment, she was coldly told to take it apart and return it herself.
Sometimes she became so exhausted, she wanted to give up and place him in the hospital, but she had made a promise to him that she would care for him at home and that promise kept her going. This book explains the complicated emotions of many caretakers and the kindness and cruelties of some health care professionals. She also shares a good deal of research about ALS. I recommend this book highly.
Alison and her husband Marty, age 57, had been married for 27 years. She kept a journal about both her & her husband's experiences and emotions regarding his ALS which is intense and painfully private, She draws the reader into a very emotional and sometimes dark place with her detailed writing, but that is the reality of ALS.
What's sad is the lack of educated medical care. For example, one nurse who came to the home knew nothing about ALS. Two days after her husband, died, and she needed to return medical equipment, she was coldly told to take it apart and return it herself.
Sometimes she became so exhausted, she wanted to give up and place him in the hospital, but she had made a promise to him that she would care for him at home and that promise kept her going. This book explains the complicated emotions of many caretakers and the kindness and cruelties of some health care professionals. She also shares a good deal of research about ALS. I recommend this book highly.
November 26, 2023
In December my health took a turn for the worse I became very weak fast and could not even eat When I say fast I mean going from eating a full plate of food to three days later not being able to drink a a sip of water I went to VA hospital emergency room for dehydration and figure they schedule me for a feeling tube placement They admitted me and two weeks later I woke up to my standing over me in the hospital room this occurred during my second or third drug holiday from Radicava Again no way to know if what I experienced was a side effect When I was discharged I was completely paralyzed So i started on Ayurvedic treatment from Natural Herbs Centre as time went on movement returned to my legs and to my arms and hands Able to hold my head up and strength has returned I give credit to God and NHC for my recovery Almost forgot to mention I was on 24 hours ventilation Now only use vent at night and during naps Was diagnosed in 2021 with ALS, I urge you to seek out natural herbs centre. com. We're a little scared to tell everyone because some people might not believe us, since there's no cure for ALS. But when I saw this post, I decided to share our story. This treatment is a breakthrough!
November 9, 2019
This is the gift that happens when a writer goes through something so intense...something for which, as we might say, "There are no words." Well there ARE words, and Alison Acheson arranges them to make something pretty amazing: her account of caring for her husband Marty during the ten months and ten days from diagnosis to death, with the disease of ALS. This book is education:we learn alongside Alison what it's like to be in such a devastating situation. We glean her gifts, her revelations, her trial-and-error hindsight hallejullas, as we are all in this thing called life together. Whatever difficulties you face, you can find comfort in Alison's words which are ultimately hopeful and always caring. Not just caring for her husband, but for the reader. Whoever you are you can feel Alison's caring. She also has a wonderful sense of humour which makes a lovely sorbet between courses of sorrow. I hope this book gets a wide readership as there are so many people who can benefit from Dance Me to the End.
April 7, 2025
I was diagnosed with MND. I had weakness in my arms, legs, and hands. I lost all of my strength. I had to keep pliers and wrenches scattered around to open things. I couldn’t walk very far, and I lost my balance easily. I had trouble swallowing and drooling sometimes. It impacted all my voluntary moves. My hands shake when I eat or write. This year my family doctor decided I try alternative treatment as Riluzole caused side effects for me. I started on the ALS/MND protocol from the Uinehealth Center. Since starting the treatment, my symptoms have greatly improved. I now write and eat without my hand shaking, I can feel my strength again with no case of muscle weakness, I’m getting active again. This is a game changer for people with motor neurone disease. Google uinehealthcentre .com. This protocol has truly transformed my daily life, allowing me to reclaim activities I once thought were lost forever. I encourage anyone facing similar challenges to explore their options and seek support, as there is hope beyond the diagnosis.
June 3, 2020
On both a professional level as a physician who has cared for people with ALS, and on a personal basis as a caregiver whose partner died of cancer, I find Alison’s narrative so real and touching on so many levels. One can through her writings live the various emotions, feel the emotional and physical fatigue, and then see the strength and courage one finds in their depths to care for the one they love.
The essence of her book comes down to living in the moment and being mindful of what life offers then, which is a lesson we would all be wise in learning.
“Life had grown to be always about change. True, this is what life is, but at that point it was too obvious; the changes were relentless....I was getting fairly good at stopping my mind. This was, after all, a crash course in living in the moment. That thing people preach. Or pacing it to move slowly. To slow the mind while one’s narrow world marches along, or runs.”
The essence of her book comes down to living in the moment and being mindful of what life offers then, which is a lesson we would all be wise in learning.
“Life had grown to be always about change. True, this is what life is, but at that point it was too obvious; the changes were relentless....I was getting fairly good at stopping my mind. This was, after all, a crash course in living in the moment. That thing people preach. Or pacing it to move slowly. To slow the mind while one’s narrow world marches along, or runs.”
April 23, 2025
I was diagnosed with Bulbar ALS. I had weakness in my arms legs and hands. I lost all of my strength. I had to keep pliers and wrenches scattered around to open things. I couldn’t walk very far, and I lost my balance easily. I had trouble swallowing and drool sometimes. It impacted all my voluntary moves. My hands shake when I eat or write. this year my PCP decided I try alternative treatment as Riluzole caused severe side effects I started on ALS/MND protocol from uine health centre which has made my coordination issues go away. That was the biggest thing that convinced me I was on the right track. Everything before that was just small improvements and was up and down at times. I have gained strength in all muscle, but my right wrist and left shoulder are the slowest to improve. My left wrist is almost back to 100%. we got the treatment from uinehealthcentre. com This is a game changer for people with ALS.
August 29, 2019
This is a terrific book. You might be prone to think its just another book about a loved one caring for their spouse with a terminal disease - but I assure you it is not. The author (the wife of a husband with ALS) leaves nothing out. Her story is raw, emotional, honest, humorous, happy, sad; emotion after emotion and everyone can relate to her regardless of your situation. I couldn't put this down and finished it in one day. Her writing style is so great I was feeling her exhaustion just from reading it and yet she continued to find her inner strength to keep on going for her own sake as well as her sons and husband. This is not a story about sadness and disease but the strength of a woman and her rediscovery of love for her husband and life.
Thank you to Edelweiss+ and Ingram Publisher Services for an advanced e-ARC in exchange for my honest review.
Thank you to Edelweiss+ and Ingram Publisher Services for an advanced e-ARC in exchange for my honest review.
March 8, 2020
Dance Me to the End: Ten Months and Ten Days with ALS by Alison Acheson will remain one of my favourite memoirs. I read it in 3 days, unable to put it down. I felt as if I was there with Acheson as she cared for her husband, Marty, who had been diagnosed with ALS. As a reader, I witnessing her world becoming smaller and smaller, as she faced each new challenge in the relentless march of ALS.
Acheson had promised to care for Marty at home until the end, despite the physical and psychological exhaustion that accompanied the losses at each stage of ALS, not only for Acheson but also for her husband as well. That Acheson was able to translate her grief and pain into an intimate memoir about love and marriage in the context of a debilitating disease is a marvel. Her humanity and strength shone through every word. Highly recommended.
Acheson had promised to care for Marty at home until the end, despite the physical and psychological exhaustion that accompanied the losses at each stage of ALS, not only for Acheson but also for her husband as well. That Acheson was able to translate her grief and pain into an intimate memoir about love and marriage in the context of a debilitating disease is a marvel. Her humanity and strength shone through every word. Highly recommended.
July 10, 2022
This book is a beautiful account of loving someone with amyotrophic lateral sclerosis (ALS). The author’s husband is diagnosed with the degenerative disease early in the book, and the author writes about his struggles as well as her and her family’s struggles to adapt and care for him as he declines. It was heartwarming to see how her love for him changes throughout the book and how she changed how she expressed that love. It was also interesting to read this book as a neuroscientist, using the book as a first-hand account of a neurodegenerative disease taking its toll on someone. Overall, I enjoyed this book, and I’m glad I got an ARC to read!
Thank you to @NetGalley and @ECWAudio for an ARC of this book in exchange for my honest review.
Thank you to @NetGalley and @ECWAudio for an ARC of this book in exchange for my honest review.
January 5, 2020
Appreciate the raw truth about the intensity of care needed to properly care for a loved one with ALS. Alison's clear descriptions easily take the reader's mind from a general to detailed vision of precise motions and actions to keep up with physical, emotional, and psychological needs of a terminally-ill loved one. Her format takes the reader through steps of understanding in a forthright, yet sensitive manner. Superbly written, concisely presented, emotionally drawing, and resulting in a clear understanding and love of those with terminal illnesses. This reader took from the book a lesson that will always be remembered: take time, take care.
January 23, 2023
My husband was diagnosed with ALS (amyotrophic lateral sclerosis) when he was 61 years old 2 years ago. The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. Last year, a family friend told us about Health Herbs Clinic (HHC) and their successful ALS TREATMENT, we visited their website www. health herbs clinic. com and ordered their ALS/MND Formula, i am happy to report the treatment effectively treated and reversed his Amyotrophic Lateral Sclerosis (ALS), most of the symptoms stopped, he is able to walk and able to ride his treadmill again, he is pretty active now.
January 27, 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
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October 30, 2019OH DEAR!!!! simply outstanding, thank you for writing a book that allows the reader to feel so many emotions almost simultaneously. If you have lost a love one or in the process of loosing one this book will help you come to terms with and understand some of the complicated feelings one goes through during the process. Sometimes it takes an honest representation of what goes though a persons head during this kind of situation to help others to come to terms with their own self doubts and confusing emotions.
February 12, 2020
This book is a gift to anyone who has felt the fear, loneliness and confusion of taking care of a dying loved one. It is also a gift to anyone who might in the future go through this most difficult of experiences. Acheson pulls no punches. She doesn’t gloss over the daily realities of being a caregiver to a dying partner or attempt to romanticize death or the process leading up to it, and yet the book is beautiful and infused with wisdom and a deep love for family and friends who helped make the worst of experiences bearable.
May 30, 2023
My husband who had been diagnosed with Bulbar ALS disease for 2 years at the age of 63 had all his symptoms reversed with Ayurveda medicine from natural herbs centre. com after undergoing their ALS/MND natural protocol, he no longer requires a feeding tube. God Bless all Lou Gehrig’s disease Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.
February 3, 2021
I started off reading a few chapters one night in mid-December. I can't do this, I thought. It's too hard, so I set it aside. Picked it up again in January and put in on my table as my Early Morning Read. A wise choice. Alison is so generous with her experience, taking us inside her thoughts, reflections, insights, and the ongoing, internal battle between Mary and Martha. It's a worthwhile read for any couple, so that they can have those important conversations about the decline of health.
September 24, 2019
Raw, heartfelt, emotional, poignant, humorous at times, and so well written. Just an absolutely beautiful story about unconditional love and the overwhelming toll it takes on the people caring for someone with ALS as well as what the patient goes through. If you don't shed some tears when reading this then you are made of stone. Keep tissues handy for sure!
March 9, 2020
I expected to weep through most of this, constantly imagining the progression and final days of my mom's ALS. Surprisingly (and gratefully) this wasn't the case. It was honest and unguarded, which was good, but I also left wishing for more, something deeper.
December 29, 2020
A must read for anyone with a spouse that has ALS. I’ve read the book twice, once to get an idea of what is to come and a second time as my husband’s disease progresses and my challenges with caregiving increase. Alison beautifully articulates her feelings and emotional struggles (feelings I share but can’t articulate nearly as well) that go along with such an awful disease.
April 20, 2020
super emotional and honest glimpse into caring for a spouse with a terminal illness
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