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Where the Light Gets In: Losing My Mother Only to Find Her Again
“The relationship between a mother and daughter is one of the most complicated and meaningful there is. Kimberly Williams-Paisley writes about her own with grace, truth, and beauty as she shares her journey back to her mother in the wake of a devastating illness.” —Brooke ShieldsMany know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on Nashville, or the wife of country music artist, Brad Paisley. But behind the scenes, Kim was dealing with a tragic her mother, Linda, was suffering from a rare form of dementia that slowly crippled her ability to talk, write and eventually recognize people in her own family. Where the Light Gets In tells the full story of Linda’s illness—called primary progressive aphasia—from her early-onset diagnosis at the age of 62 through the present day. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering.Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, Where the Light Gets In is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.
264 pages, Kindle Edition
First published March 29, 2016
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About the author
Kimberly Williams-Paisley
3 books394 followersKimberly Williams-Paisley is an actress, writer and advocate for dementia research and caregivers. She and her husband, country artist, Brad Paisley, live in Tennessee with their two sons and two dogs.
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Displaying 1 - 30 of 709 reviews
October 21, 2016
Primary Progressive Aphasia (PPA) ... is a form of cognitive impairment that involves a a progressive loss of language function ...PPA is caused by degeneration in the parts of the brain that are responsible for speech: slowed speech, decreased use of language, word-finding hesitations, sentences with abnormal word order in speech or emails, substitution of words, using words that are missed pronounced, difficulty understanding a conversation, forgetting names objects, inability to think of names of people, even though the person is recognized, problems with writing, problems with reading, new impairments with spelling, etc.
I listened to the audiobook- which Kimberly Williams -Paisley wrote and narrated.
Kimberly shares a very personal family story. It's a tribute to her mother and their relationship.
Michael J. Fox wrote the forward....a reminder to me that living with an incurable disease reaches out to many people --most intimately the caretakers, and family members, but even people in the community... and the fans if the person is famous.
Our hearts get touched - our empathy and compassion is felt!
It's a lovely ( gosh it's hard to find the right adjective) audiobook. Kimberly 's voice and demeanor is as real and sweet as you imagine she is. I mean, come-on... we saw,
"Father of the Bride". She couldn't be THAT different from the character she played - could she? No... she's really a sweetheart. The story about how she landed the role in "Father-of-The-Bride" is in here too --- very much connected to her mother's love - strength of character --( from when her mother was healthy) .
She also shares about her 'own' wedding! I applaud her for the choices she made!
Wonderful 'add-to' to your audio-listening list. It's touching because it's real life.
This is a wholesome family - caring - good people-
There is happiness in this story-- and there is this very sad disease.
Kimberly handles the subject with sensitivity, honesty, and love.
I listened to the audiobook- which Kimberly Williams -Paisley wrote and narrated.
Kimberly shares a very personal family story. It's a tribute to her mother and their relationship.
Michael J. Fox wrote the forward....a reminder to me that living with an incurable disease reaches out to many people --most intimately the caretakers, and family members, but even people in the community... and the fans if the person is famous.
Our hearts get touched - our empathy and compassion is felt!
It's a lovely ( gosh it's hard to find the right adjective) audiobook. Kimberly 's voice and demeanor is as real and sweet as you imagine she is. I mean, come-on... we saw,
"Father of the Bride". She couldn't be THAT different from the character she played - could she? No... she's really a sweetheart. The story about how she landed the role in "Father-of-The-Bride" is in here too --- very much connected to her mother's love - strength of character --( from when her mother was healthy) .
She also shares about her 'own' wedding! I applaud her for the choices she made!
Wonderful 'add-to' to your audio-listening list. It's touching because it's real life.
This is a wholesome family - caring - good people-
There is happiness in this story-- and there is this very sad disease.
Kimberly handles the subject with sensitivity, honesty, and love.
May 4, 2016
After losing my mother last June, I have been drawn to books about mother-daughter relationships.
Where the Light Gets In is a powerful, poignant, and moving account of Kimberly Williams-Paisley's struggle with her mother Linda's primary progressive aphasia (a rare form of dementia). Williams-Paisley gives an unflinching account of the mistakes and successes of care decisions made by her family, what they have learned, and tools for coping with the illness of a loved one. Even in times of great darkness, I was struck over and over again by the strength of the family and power of their love for Linda. While they must continue to learn to interact with Linda in new ways--and while Linda is not the same as she once was--her love and strength continue to inspire her family, and now, the world.
Highly recommended.
Where the Light Gets In is a powerful, poignant, and moving account of Kimberly Williams-Paisley's struggle with her mother Linda's primary progressive aphasia (a rare form of dementia). Williams-Paisley gives an unflinching account of the mistakes and successes of care decisions made by her family, what they have learned, and tools for coping with the illness of a loved one. Even in times of great darkness, I was struck over and over again by the strength of the family and power of their love for Linda. While they must continue to learn to interact with Linda in new ways--and while Linda is not the same as she once was--her love and strength continue to inspire her family, and now, the world.
Highly recommended.
May 9, 2016
The bravery and eloquence with which Kimberly Williams-Paisley tells her family’s story is heart-wrenching. Kim shares how her mother, a once fearless, adventurous woman was affected by PPA, Primary Progressive Aphasia, a disease that her father called “the rat” – an intruder gnawing at his wife’s clarity, memory and rational thinking.
The story had me captivated from beginning to end. I appreciated learning about Kim’s strong family foundation – her private applause section as she called it. What an incredible mother to give her child a “parachute book,” a reminder of all of her accomplishments that would sustain and support her as she left for college. It’s no wonder that she won the role in “Father of the Bride” with such a strong support system behind her.
The glimpse into her courtship and marriage to Brad Paisley was indeed a fairy tale. At the time she was praying to meet her life partner, Brad recalled seeing her in the movie from years earlier and reached out. If there is such a thing as divine-matchmaking, I think I just witnessed it.
Kim describes her mother’s decline with such poignancy—“it was if an entire piano keyboard had shrunk down to just 4 notes, this death by paper cut inflicting tiny wounds of attrition with every new loss.” I was touched by her raw honesty as she struggled to cope with and finally accept her “new mother.”
Writing this book could not have been easy but I hope it was cathartic. For anyone dealing with PPA, Alzheimer’s or dementia, it's a must read, especially to learn a few lessons from Kim’s experience like having the person spell out their wishes as soon as the diagnosis is made and to be mindful of the caretaker as it’s a daunting and draining job.
And as I visited my 89-year-old mom this Mother’s day, I said a prayer of thanks. Although she is in a wheel-chair, she is fully cognizant, something for which I’m now extra-grateful. As Kim speculated, maybe PPA was a cosmic lesson, crafted just for her mom to weaken her rational mind so she could discover the essential truths that laid beyond reason. What a powerful, insightful, spiritual outlook, one that really makes you think about the trials that life throws our way and the lessons they teach us.
The story had me captivated from beginning to end. I appreciated learning about Kim’s strong family foundation – her private applause section as she called it. What an incredible mother to give her child a “parachute book,” a reminder of all of her accomplishments that would sustain and support her as she left for college. It’s no wonder that she won the role in “Father of the Bride” with such a strong support system behind her.
The glimpse into her courtship and marriage to Brad Paisley was indeed a fairy tale. At the time she was praying to meet her life partner, Brad recalled seeing her in the movie from years earlier and reached out. If there is such a thing as divine-matchmaking, I think I just witnessed it.
Kim describes her mother’s decline with such poignancy—“it was if an entire piano keyboard had shrunk down to just 4 notes, this death by paper cut inflicting tiny wounds of attrition with every new loss.” I was touched by her raw honesty as she struggled to cope with and finally accept her “new mother.”
Writing this book could not have been easy but I hope it was cathartic. For anyone dealing with PPA, Alzheimer’s or dementia, it's a must read, especially to learn a few lessons from Kim’s experience like having the person spell out their wishes as soon as the diagnosis is made and to be mindful of the caretaker as it’s a daunting and draining job.
And as I visited my 89-year-old mom this Mother’s day, I said a prayer of thanks. Although she is in a wheel-chair, she is fully cognizant, something for which I’m now extra-grateful. As Kim speculated, maybe PPA was a cosmic lesson, crafted just for her mom to weaken her rational mind so she could discover the essential truths that laid beyond reason. What a powerful, insightful, spiritual outlook, one that really makes you think about the trials that life throws our way and the lessons they teach us.
November 6, 2016
Sigh. Okay, I'm giving this five stars, because it speaks to my situation, but if I were rating it purely as a family memoir I'd have rated it a bit lower. Though that really wouldn't have been fair either, since illness memoirs aren't one of my preferred genres, and neither are autobiographies of actresses. The thing is, I'd never heard of Kimberly Williams-Paisley before Audible sent me an ad for this book (in its audio form), but it caught my eye because, like the author, I am losing my mother to a form of frontotemporal dementia.
Williams-Paisley tells the story of her mother's rapid decline from being an active, intelligent, strong-willed woman to her current (?) state of wheelchair-bound muddled silence as a result of Primary Progressive Aphasia. She talks about her feelings of guilt and her grief, her fears and her failures as she and her family struggle to help her mother adjust with some dignity to her condition, and, later, to cope with the challenges of caring for a confused, often uncooperative, but still deeply loved parent/spouse. The family's affluence means that there is a lot about talking with counselors and therapists, which, while I'm sure it's helpful, probably won't be part of the experience of less wealthy families dealing with this sort of thing. Otherwise, though, I found the book surprisingly... helpful. It wasn't helpful in the sense that it offered any serious hints for connecting with a loved one whose brain is deteriorating and whose communication skills/interest have vanished (the cover, with the smiling mother and daughter, while attractive, is a bit misleading). But, when my daughter asked me, worriedly, “Mom, why do you keep reading that book when it keeps making you cry?” I told her, “Because it's putting into to words a lot of things that have been in my head. Things that need to be said.”
Williams-Paisley articulates my most anguished fears,
Williams-Paisley continues, “I preferred accepting the loss and trying to move forward. But to do that I needed to mourn, and I was having trouble figuring out how while she was still alive. I was in a holding pattern of confused grief.” Which I get, but, for my mom at least, I'm sure that she does still have thoughts and fears, and the horror is the fact that, try as we will, we can't reach her, and she's trapped in a body that no longer works properly, feeling alone and utterly betrayed by those who should be able to rescue her.
I probably couldn't have made it through the book if the author's mother were more like mine. Her mom was tough, somewhat judgmental, a bit raucous – an adventurer, who pushed her daughter to tackle some real challenges. When PPA begins to affect her she loses social inhibitions and becomes dramatically emotional and occasionally aggressive. The differences between her mom and my own polite, gentle, incredibly nurturing mom (yeah, she's always been pretty perfect, and we were close) allowed me to separate myself from the narrative a little, which was a relief and saved the book from becoming completely waterlogged. The sections about Williams-Paisley's acting career and courtship, which normally would have bored me silly, were, in this case, a nice emotional breather. My mom appears to be suffering from a variant of PPA, Progressive Nonfluent Aphasia, which isn't better than PPA, as far as I can tell, but the difference did help me keep perspective and remember that this is just one family's experience. My mom's eyes still light up occasionally – when we were discussing “Romeo and Juliet” over dinner the other night (my daughter is studying it in school), I commented “You used to teach that play, Mom, right?” and there was a brief flicker of recognition. Our story may well end more happily, but Williams-Paisley offers a helpful perspective.
Finally, another aspect Williams-Paisley give a lot of time to, and that I felt was of particular value, was the incredible strain that caring for a partner suffering from a degenerative brain disease puts on their spouse. Hard as it is for adult children to try to assist, cheer, and communicate with a parent who has become silent and unresponsive, that sadness and loss can't compare with the physical and emotional exhaustion of the primary caretaker. Williams-Paisley chronicles her father's efforts, first to enable his wife to continue to work, drive, and interact socially, and later to care for her physical needs as her failing brain and uncontrolled emotions made life together increasingly dangerous and chaotic. My mom, withdrawn and unresponsive, though restlessly active, is, as I said, very unlike the author's, but the strain of 24/7 caretaker duty on my dad is similar, if less intense. Though it's something I've been well aware of and have done what I can to relieve, it's a point that just can't be overemphasized. Caretakers need to be supported.
Right up to the end I felt a little nagging resentment that Williams-Paisley wasn't going to come through with the promise of the subtitle “Losing My Mother Only to Find Her Again.” I knew she wasn't going to discover a magic charm for reaching past damaged brain tissue and connecting with the beloved person inside, the person who has been stolen away or trapped behind an impenetrable dark wall. And she doesn't, really. But what she does offer is the realization that she can take the lessons that her mom taught her by word and example about how to live a worthwhile life, and she can act on those and honor her mother by living in a way that would make her proud and happy. Williams-Paisley concludes with a story of joining her sons in playing in the icy waters of the Pacific, racing into the waves the way her mother did with her when she was a child. Reading this, I realized that, feeble though it is, I at least honor my mother when I try to follow her example in various ways. It's not much, but it's not nothing, and I know that if she could know I was doing it, she'd smile and be pleased.
So. A difficult book for me, but, despite the dull bits, it gets five stars for utterly personal, nonliterary reasons. I admire and appreciate the author's (and her family's) courage in being so open about the family's struggle with this horrible disease, offering the possibility that their experiences and mistakes may be of some help or comfort to others. A disease that feels so utterly unrelenting in its progression can leave loving families and friends feeling rather despairing, but Williams-Paisley offers some valuable suggestions for making the best of a bad situation. Through her story she illustrates the necessity of support and compassion for the primary caregiver, family communication, and flexibility and imagination in connecting in whatever ways are still possible with the sufferer. She also concludes with an excellent section called “Resources,” offering, obviously, where to find resources for various dementia-related issues. There were several that I plan to look further into, and having specific websites is helpful.
Williams-Paisley tells the story of her mother's rapid decline from being an active, intelligent, strong-willed woman to her current (?) state of wheelchair-bound muddled silence as a result of Primary Progressive Aphasia. She talks about her feelings of guilt and her grief, her fears and her failures as she and her family struggle to help her mother adjust with some dignity to her condition, and, later, to cope with the challenges of caring for a confused, often uncooperative, but still deeply loved parent/spouse. The family's affluence means that there is a lot about talking with counselors and therapists, which, while I'm sure it's helpful, probably won't be part of the experience of less wealthy families dealing with this sort of thing. Otherwise, though, I found the book surprisingly... helpful. It wasn't helpful in the sense that it offered any serious hints for connecting with a loved one whose brain is deteriorating and whose communication skills/interest have vanished (the cover, with the smiling mother and daughter, while attractive, is a bit misleading). But, when my daughter asked me, worriedly, “Mom, why do you keep reading that book when it keeps making you cry?” I told her, “Because it's putting into to words a lot of things that have been in my head. Things that need to be said.”
Williams-Paisley articulates my most anguished fears,
”The possibility that she might still have normal thoughts and fears that were hidden from us, that she might be feeling the pain and horror of her experience or understand what was happening to her, was unbearable.”
Williams-Paisley continues, “I preferred accepting the loss and trying to move forward. But to do that I needed to mourn, and I was having trouble figuring out how while she was still alive. I was in a holding pattern of confused grief.” Which I get, but, for my mom at least, I'm sure that she does still have thoughts and fears, and the horror is the fact that, try as we will, we can't reach her, and she's trapped in a body that no longer works properly, feeling alone and utterly betrayed by those who should be able to rescue her.
I probably couldn't have made it through the book if the author's mother were more like mine. Her mom was tough, somewhat judgmental, a bit raucous – an adventurer, who pushed her daughter to tackle some real challenges. When PPA begins to affect her she loses social inhibitions and becomes dramatically emotional and occasionally aggressive. The differences between her mom and my own polite, gentle, incredibly nurturing mom (yeah, she's always been pretty perfect, and we were close) allowed me to separate myself from the narrative a little, which was a relief and saved the book from becoming completely waterlogged. The sections about Williams-Paisley's acting career and courtship, which normally would have bored me silly, were, in this case, a nice emotional breather. My mom appears to be suffering from a variant of PPA, Progressive Nonfluent Aphasia, which isn't better than PPA, as far as I can tell, but the difference did help me keep perspective and remember that this is just one family's experience. My mom's eyes still light up occasionally – when we were discussing “Romeo and Juliet” over dinner the other night (my daughter is studying it in school), I commented “You used to teach that play, Mom, right?” and there was a brief flicker of recognition. Our story may well end more happily, but Williams-Paisley offers a helpful perspective.
Finally, another aspect Williams-Paisley give a lot of time to, and that I felt was of particular value, was the incredible strain that caring for a partner suffering from a degenerative brain disease puts on their spouse. Hard as it is for adult children to try to assist, cheer, and communicate with a parent who has become silent and unresponsive, that sadness and loss can't compare with the physical and emotional exhaustion of the primary caretaker. Williams-Paisley chronicles her father's efforts, first to enable his wife to continue to work, drive, and interact socially, and later to care for her physical needs as her failing brain and uncontrolled emotions made life together increasingly dangerous and chaotic. My mom, withdrawn and unresponsive, though restlessly active, is, as I said, very unlike the author's, but the strain of 24/7 caretaker duty on my dad is similar, if less intense. Though it's something I've been well aware of and have done what I can to relieve, it's a point that just can't be overemphasized. Caretakers need to be supported.
Right up to the end I felt a little nagging resentment that Williams-Paisley wasn't going to come through with the promise of the subtitle “Losing My Mother Only to Find Her Again.” I knew she wasn't going to discover a magic charm for reaching past damaged brain tissue and connecting with the beloved person inside, the person who has been stolen away or trapped behind an impenetrable dark wall. And she doesn't, really. But what she does offer is the realization that she can take the lessons that her mom taught her by word and example about how to live a worthwhile life, and she can act on those and honor her mother by living in a way that would make her proud and happy. Williams-Paisley concludes with a story of joining her sons in playing in the icy waters of the Pacific, racing into the waves the way her mother did with her when she was a child. Reading this, I realized that, feeble though it is, I at least honor my mother when I try to follow her example in various ways. It's not much, but it's not nothing, and I know that if she could know I was doing it, she'd smile and be pleased.
So. A difficult book for me, but, despite the dull bits, it gets five stars for utterly personal, nonliterary reasons. I admire and appreciate the author's (and her family's) courage in being so open about the family's struggle with this horrible disease, offering the possibility that their experiences and mistakes may be of some help or comfort to others. A disease that feels so utterly unrelenting in its progression can leave loving families and friends feeling rather despairing, but Williams-Paisley offers some valuable suggestions for making the best of a bad situation. Through her story she illustrates the necessity of support and compassion for the primary caregiver, family communication, and flexibility and imagination in connecting in whatever ways are still possible with the sufferer. She also concludes with an excellent section called “Resources,” offering, obviously, where to find resources for various dementia-related issues. There were several that I plan to look further into, and having specific websites is helpful.
April 18, 2016
The writing is competent but not particularly insightful or literary. Williams-Paisley comes across as somewhat self-centered. I appreciate her honesty, and I wish her and her family the best, but the book itself did not live up to my expectations.
April 27, 2016
Anyone who has had a family member suffer the effects of dementia or Alzheimer's knows what an all-encompassing and devastating disease they are and how they can affect not only the person afflicted with the disease but their loved ones as well.
As someone who has lost both grandmothers to Alzheimer's I know that it's a very hard and emotional road.
In this book Williams-Paisley brings her readers into her personal life and her mother's struggles with PPA (Primary Progressive Aphasia) - a rare form of dementia. You immediately get the feel that Williams-Paisley is a down-to-earth person who brings her readers into very personal moments in her life - especially her sometimes strained yet resilient relationship with her mother. Williams-Paisley's writing is relatable and approachable which enabled me to easily empathize with some of her struggles. You quickly forget that she's on TV, in movies and married to a famous country singer. In the end she's just a woman struggling to hold onto her mother while juggling commitments to her father, siblings, work and her own young family.
If I could give one criticism it would be that I wish Kim's mother and father were able to share their thoughts about the disease and how it changed their lives and relationship. I realize that, at the time of Williams-Paisley was writing the book her mother may not have been able to share her experiences but getting a glimpse into her own personal feelings would have been a great addition. Her father, Gurney's denial of Linda's illness and her need for more care (and his need for more help) was very hard to read but his unquestionable love and respect for his wife was always clear to readers. I have the utmost of respect for Williams-Paisley and her siblings for not allowing Linda's PPA totally overshadow their father's future happiness. It would have been a very hard thing to experience for these siblings but in the end shows yet another struggle that some spouses and children of dementia patients must face.
If I could give two words to describe this book they would be: emotional and candid. I appreciated that Williams-Paisley never sugar coats anything. She's honest about her feelings, actions, struggles and her relationship with her mother before and after the diagnosis. Williams-Paisley shows how her thought processes and feelings changed once she started to look at not what her mother and the rest of the family were losing but instead focus on all the things they could still enjoy and gain from each other. It's a simple shift in thinking yet sometimes quite a difficult transition to make. Once they were able to experience that revelation was the Williams' family able to finally let the 'light get in' and take all they could from each experience with Linda.
Note: A touching foreword by Michael J Fox - fellow actor and health advocate - is the icing on the cake for this read.
Recommended.
As someone who has lost both grandmothers to Alzheimer's I know that it's a very hard and emotional road.
In this book Williams-Paisley brings her readers into her personal life and her mother's struggles with PPA (Primary Progressive Aphasia) - a rare form of dementia. You immediately get the feel that Williams-Paisley is a down-to-earth person who brings her readers into very personal moments in her life - especially her sometimes strained yet resilient relationship with her mother. Williams-Paisley's writing is relatable and approachable which enabled me to easily empathize with some of her struggles. You quickly forget that she's on TV, in movies and married to a famous country singer. In the end she's just a woman struggling to hold onto her mother while juggling commitments to her father, siblings, work and her own young family.
If I could give one criticism it would be that I wish Kim's mother and father were able to share their thoughts about the disease and how it changed their lives and relationship. I realize that, at the time of Williams-Paisley was writing the book her mother may not have been able to share her experiences but getting a glimpse into her own personal feelings would have been a great addition. Her father, Gurney's denial of Linda's illness and her need for more care (and his need for more help) was very hard to read but his unquestionable love and respect for his wife was always clear to readers. I have the utmost of respect for Williams-Paisley and her siblings for not allowing Linda's PPA totally overshadow their father's future happiness. It would have been a very hard thing to experience for these siblings but in the end shows yet another struggle that some spouses and children of dementia patients must face.
If I could give two words to describe this book they would be: emotional and candid. I appreciated that Williams-Paisley never sugar coats anything. She's honest about her feelings, actions, struggles and her relationship with her mother before and after the diagnosis. Williams-Paisley shows how her thought processes and feelings changed once she started to look at not what her mother and the rest of the family were losing but instead focus on all the things they could still enjoy and gain from each other. It's a simple shift in thinking yet sometimes quite a difficult transition to make. Once they were able to experience that revelation was the Williams' family able to finally let the 'light get in' and take all they could from each experience with Linda.
Note: A touching foreword by Michael J Fox - fellow actor and health advocate - is the icing on the cake for this read.
Recommended.
April 13, 2016
A MUST READ FOR ANYONE GOING THROUGH DEMENTIA/ALZHEIMER'S
If only I'd had this 12 years ago. I know my dad hid a lot of my mom's problems from me. He didn't know what was going on either. When we finally took her to the doctor for those "little tests ", the doctor came in with papers from the Internet. He NEVER said she had ALZ. I did. It still was very much a stigma in 2004. Don't wait or make a joke like we would when leaving my parents' house. It would be much better knowing you'd made a mistake than do nothing for as long as we did.
It took a lot of courage, and putting yourself up for ridicule, Kim, by writing this. I was at the ALZ Forum last week when you spoke and received your award. You have written from the heart and said so much that so many of us wish we'd been able to say.
Definitely read this book if you're going through this now or have "been there" like me. Also, become an advocate, like she said, for those who aren't able to talk for themselves. Tell your Senators and Congressmen how important research is and how the funding MUST be increased. Beg them to sponsor the HOPE Act, which provides information and education to medical personnel and caregivers. Give what you can to help with funding locally and volunteer for The Longest Day, Blondes vs Brunettes Football Games, and The Walk to End Alzheimer's. This is my passion because NO ONE should have to watch a family member go through this. It HAS to end and the only way it can is with YOUR help.
If only I'd had this 12 years ago. I know my dad hid a lot of my mom's problems from me. He didn't know what was going on either. When we finally took her to the doctor for those "little tests ", the doctor came in with papers from the Internet. He NEVER said she had ALZ. I did. It still was very much a stigma in 2004. Don't wait or make a joke like we would when leaving my parents' house. It would be much better knowing you'd made a mistake than do nothing for as long as we did.
It took a lot of courage, and putting yourself up for ridicule, Kim, by writing this. I was at the ALZ Forum last week when you spoke and received your award. You have written from the heart and said so much that so many of us wish we'd been able to say.
Definitely read this book if you're going through this now or have "been there" like me. Also, become an advocate, like she said, for those who aren't able to talk for themselves. Tell your Senators and Congressmen how important research is and how the funding MUST be increased. Beg them to sponsor the HOPE Act, which provides information and education to medical personnel and caregivers. Give what you can to help with funding locally and volunteer for The Longest Day, Blondes vs Brunettes Football Games, and The Walk to End Alzheimer's. This is my passion because NO ONE should have to watch a family member go through this. It HAS to end and the only way it can is with YOUR help.
April 11, 2016
I read this book in two days. I could not put it down. My mother in law was diagnosed with aphasia about 2 years ago (she is now 80). She started forgetting words or just simply could not get them out. It got progressively worse and it is very difficult to have any conversation with her, but it does not stop her from trying. This book hit home and I'm sure it is a peek into where our family is headed. The most important thing she mentioned in this book is to watch out for the caregiver. My father in law is 83 and the stress that goes along with the caregiver position can be extremely difficult. I just finished this book today, but she provided so many resources at the end of the book for people in this heartbreaking situation that I am planning on exploring them all.
April 23, 2021
This book was wonderful.
I don’t always weep my way through books, but this book hit every hard spot—every secret, hidden place in my heart. Every other page is marked for my commonplace in this very raw look at a daughter’s journey with her mother who had a rare form of dementia. I appreciated her sense of humor through all of the emotions, and tucked many treasures in my heart as I take care of my own mother—to look for those “golden paperclips”—the places where the light gets in. I especially appreciated her discussing her Dad, how he longed for companionship with someone else even though he was still technically married. The anger and awkwardness there, how that changed, and ended up being a blessing for the whole family... Life can be so hard and weird, yet beautiful all at the same time.
Some quotes:
“I was mad at Dad, too. How could he let her walk all over him? How could he let this disease kill both of them? I turned forty, and for the first time in my life, I didn’t hear from my parents at all on my birthday. I had a pit in my stomach. They’d abandoned me. And once again I hated myself for that selfish thought.”
“Old Mom tormented me, wounded me with her silence, and sometimes left me sobbing in bed for hours. She was like a ghost who was fading fast. The harder I tried to grasp her, the more it felt as if she’d deserted me. New Mom was a cruel counterfeit, reminding me that the other one wasn’t gone, wasn’t at peace, but was trapped.”
“I preferred accepting the loss and trying to move forward. But to do that I needed to mourn, and I was having trouble figuring out how while she was still alive. I was in a holding pattern of confused grief.”
“I need to see her as she is, instead of how I want her to be.”
“My mother is not only presenting me with an opportunity to love unconditionally, she’s also allowing me to practice being comfortable with what is uncomfortable. To grieve and also embrace what is broken. To know that some days I can receive who my mother is now and some days I struggle with it. To allow that two opposing thoughts may exist in my head at the same time. I want things to be the way they were, and I am relieved that they never will be again. I regret I didn’t feel more acceptance from my mother at times in my life, and I’m grateful for the lesson she is giving me now in accepting myself. Jay put it this way: ‘Letting go of what she used to be has been the hardest act, and yet the most liberating.’”
“In accepting our limited wisdom, we allow for infinite possibility.”
“But lately, just when I think I’ve lost her, I find her again in small things and brief moments. They deepen the mystery, and feel something like miracles.”
I don’t always weep my way through books, but this book hit every hard spot—every secret, hidden place in my heart. Every other page is marked for my commonplace in this very raw look at a daughter’s journey with her mother who had a rare form of dementia. I appreciated her sense of humor through all of the emotions, and tucked many treasures in my heart as I take care of my own mother—to look for those “golden paperclips”—the places where the light gets in. I especially appreciated her discussing her Dad, how he longed for companionship with someone else even though he was still technically married. The anger and awkwardness there, how that changed, and ended up being a blessing for the whole family... Life can be so hard and weird, yet beautiful all at the same time.
Some quotes:
“I was mad at Dad, too. How could he let her walk all over him? How could he let this disease kill both of them? I turned forty, and for the first time in my life, I didn’t hear from my parents at all on my birthday. I had a pit in my stomach. They’d abandoned me. And once again I hated myself for that selfish thought.”
“Old Mom tormented me, wounded me with her silence, and sometimes left me sobbing in bed for hours. She was like a ghost who was fading fast. The harder I tried to grasp her, the more it felt as if she’d deserted me. New Mom was a cruel counterfeit, reminding me that the other one wasn’t gone, wasn’t at peace, but was trapped.”
“I preferred accepting the loss and trying to move forward. But to do that I needed to mourn, and I was having trouble figuring out how while she was still alive. I was in a holding pattern of confused grief.”
“I need to see her as she is, instead of how I want her to be.”
“My mother is not only presenting me with an opportunity to love unconditionally, she’s also allowing me to practice being comfortable with what is uncomfortable. To grieve and also embrace what is broken. To know that some days I can receive who my mother is now and some days I struggle with it. To allow that two opposing thoughts may exist in my head at the same time. I want things to be the way they were, and I am relieved that they never will be again. I regret I didn’t feel more acceptance from my mother at times in my life, and I’m grateful for the lesson she is giving me now in accepting myself. Jay put it this way: ‘Letting go of what she used to be has been the hardest act, and yet the most liberating.’”
“In accepting our limited wisdom, we allow for infinite possibility.”
“But lately, just when I think I’ve lost her, I find her again in small things and brief moments. They deepen the mystery, and feel something like miracles.”
May 27, 2019
5 stars.🌟🌟🌟🌟🌟
So very brave and honest.
Kimberly Williams -Paisley paints a heartbreaking picture of her mother's slow cognitive deterioration following her diagnosis with Primary Progressive Aphasia (PPA). A form of dementia that robbed her mother of speech, clarity, memory and her reasoning abilities .
The writing here was beautiful, poignant and captivating.
The way Kimberly narrates this story involving her family's personal journey of loss was very illuminating not only because she describes a strong, close knit family but also because of the way she highlighted how everybody in her family processed and dealt with her mother's illness somewhat differently at times.
A powerful and impressive read.
So very brave and honest.
Kimberly Williams -Paisley paints a heartbreaking picture of her mother's slow cognitive deterioration following her diagnosis with Primary Progressive Aphasia (PPA). A form of dementia that robbed her mother of speech, clarity, memory and her reasoning abilities .
The writing here was beautiful, poignant and captivating.
The way Kimberly narrates this story involving her family's personal journey of loss was very illuminating not only because she describes a strong, close knit family but also because of the way she highlighted how everybody in her family processed and dealt with her mother's illness somewhat differently at times.
A powerful and impressive read.
March 18, 2021
Six years ago I read the book If I'd Known Then: Women in their 20s and 30s Write Letters to Their Younger Selves, which has a letter written by Kimberley Williams-Paisley (one of the main reasons it caught my attention in the first place) and in the short review I wrote for it I said:
Most of us usually compare our lives to the perfect lives we think these women have, but now we learn that they had some pretty hard times too...
This book is for young woman to realized that they are not alone in what they're feeling or going through.
And that's kind of what Where the Light Gets In is too; the story of someone who has this public image that we never really think to look past of.
It's also a book to let anyone in a similar situation know that they are not alone.
This was written for those people in a similar situation; who probably do feel alone and lost I did see a lot of moments where it's obvious that she felt alone in this. Even though she had her father, siblings and husband; she still had her moments of absolute helplessness. And considering this book was written in hind-sight it made it more heartbreaking because there were probably a few "What ifs?" going through her mind.
I can't even begin to imagine everything she felt. There are so many moments where you can really understand what she was thinking, but even then it's just the tip of the iceberg. Because the rest is something only someone in a similar situation would wholly understand.
She shares so much of what the entire family went through and all the things they tried to do for her mother. All the things she wished they had done.
Throughout I just kept thinking "This is what it's like to be a daughter/child isn't it?" One day the person you looked to will be looking for you.
Then to decide to share it with the world.
It's simply beautiful, heartbreaking, thought-provoking, inspiring and so much more.
It's life.
I received this book from Blogging for Books for this review.
Most of us usually compare our lives to the perfect lives we think these women have, but now we learn that they had some pretty hard times too...
This book is for young woman to realized that they are not alone in what they're feeling or going through.
And that's kind of what Where the Light Gets In is too; the story of someone who has this public image that we never really think to look past of.
It's also a book to let anyone in a similar situation know that they are not alone.
This was written for those people in a similar situation; who probably do feel alone and lost I did see a lot of moments where it's obvious that she felt alone in this. Even though she had her father, siblings and husband; she still had her moments of absolute helplessness. And considering this book was written in hind-sight it made it more heartbreaking because there were probably a few "What ifs?" going through her mind.
I can't even begin to imagine everything she felt. There are so many moments where you can really understand what she was thinking, but even then it's just the tip of the iceberg. Because the rest is something only someone in a similar situation would wholly understand.
She shares so much of what the entire family went through and all the things they tried to do for her mother. All the things she wished they had done.
Throughout I just kept thinking "This is what it's like to be a daughter/child isn't it?" One day the person you looked to will be looking for you.
Then to decide to share it with the world.
It's simply beautiful, heartbreaking, thought-provoking, inspiring and so much more.
It's life.
I received this book from Blogging for Books for this review.
April 16, 2016
Thank you for writing this book. I lost my mom at age 76 on April 1, 2016. She battled dementia for at least 7 years. She was never specifically diagnosed with PPA- but she lost her speech first & there were so many similarities to your mom. Bless my dad for keeping her at home until the end. Not sure how he did it but us kids & grandkids & my brother in law helped when we could.
July 25, 2016
I really loved the message of the book which simply stated is love the version that is- not what you had or want it to be. It seemed as though Kimberly was fully able to love her mother more once she let go of who her mother was and saw her mother for the woman she is.
May 20, 2021
“In accepting our limited wisdom we allow for infinite possibility.”
Dementia is heartbreaking. This story is inspiring, funny and insightful. She isn’t a writer and I kept having to remind myself of that fact. She does a good & tender job of telling her mother’s story and bringing awareness to such a horrible condition.
Dementia is heartbreaking. This story is inspiring, funny and insightful. She isn’t a writer and I kept having to remind myself of that fact. She does a good & tender job of telling her mother’s story and bringing awareness to such a horrible condition.
July 1, 2016
The main reason I was interested in this book is because my Grandma died from dementia related causes earlier this year. Although my Grandma didn't have PPA and I didn't live close and wasn't involved in her care much, I did watch my mother be the primary caregiver for my Grandma until it became too much for her. She and my Dad had to make the agonizing decision to place her in an assisted living facility. It's so hard dealing with someone who isn't anything like who they "really" are and who doesn't process what's going on like a normal adult. There's a lot of guilt involved with deciding to withhold information from them and because of fleeting thoughts you might have of how much easier things would be if the person could pass on. Being a caregiver of someone with these types of illnesses is so demanding and Kimberly openly shared details about just how difficult it can be. Great, quick read.
May 24, 2016
Not my usual sort of book, I chose this after seeing an interview with Williams-Paisley about the book and her relationship with her mother. I was pleasantly surprised by how "real" I found the journey her family has gone through. I stereotype celebrity books like this often as full of meaningless platitudes. I realized I had incorrect expectations as I read the don't make the same mistakes we did sections or agonized with her father and siblings on how hard this was for them in a caregiving capacity. The raw honestly sets this apart, and I found the information sections in the back of the book especially helpful as I currently have two relatives with dementia issues (although not aphasia as described here).
July 18, 2016
This was an enlightening book about what a disease like this looks like and what it can do to a family. I enjoyed Kimberly's viewpoint as she struggled to understand this new version of her mother and what role she needed to play. This book is mostly about Kimberly's own growth process of letting go of what life was used to be and embracing what it is now. This isn't a happy ending sort of memoir as much as it is about overcoming hardship as a family and its resilience to stick together through the tough stuff.
August 11, 2016
This is such an honest telling of a heart-wrenching experience. I was moved to tears in almost every time I picked it up. How incredibly brave of the author to share her thoughts and feelings through this experience - thoughts that I would undoubtedly have if I were in this situation but don't know if I would admit.
September 3, 2016
Exceptionally honest, and without pretense. The sort of generous writing I'm so grateful to experience, permitting me to step back, breathe, and remember that what connects us far overshadows that which separates.
August 21, 2016
A sensitively written account of the actress's mother's struggle with PPA, a progressive form of dementia. As a person whose own family has been profoundly affected by dementia, Williams-Pailey's story felt authentic and honest and sometimes triggered some pretty painful memories. Well done.
April 20, 2016
This book was painfully real and as someone who cared for their dying mother I could totally relate to the mix of emotions Kimberly Williams - Paisley feels. Everyone should read this book.
September 30, 2016
Someone close to me has dementia. She is slowly slipping away. I appreciated the openness with which Kimberly shared about her mom. Thank you for your insights that can help us all.
November 12, 2016
This was a great book! Very informative about alzheimers and/or dementia.
October 9, 2018
Well, that was a gut-wrenching, accurate portrayal of life with a loved one living with dementia. My grandma had it and it was tough for sooo long. She outlived all the other people on her memory care wing twice over. When she was first interviewed to determine what level of memory care she needed (levels 1-4), they quickly decided she would need their highest level as most of the answers to their questions were “I am old and do not give a damn!” It’s hard, so hard on the loved ones that go through it. It almost got better once my grandma stopped realizing she was losing her memory. Then she wasn’t fearful of it happening.
Kimberly made a point about riding the horse in whichever direction it was going and that’s great advice. Improv skills come in handy with people with dementia. Play in their world, don’t make them try to fit back in reality. Laugh at each and every thing you can, because if you don’t, then you’ll just cry. The conflicting emotions of having to care for someone who is no longer there, but is still living is so hard and Kimberly did a good job of showing the draining impact it can have on caretakers. It’s a good, but hard book. If you don’t know somebody who has gone through dementia, it might be easier to get through. If you do know someone who has, it might bring up lots of painful memories. I’m choosing to have a good cry and then remember the good memories. Like when my mom once asked my grandma who she was to gauge her memory that day and my grandma responded with, “Well, you’re Old Big One!” My mom will forever have the nickname of OB1 and we’ll laugh and cry thinking about how she got it.
Kimberly made a point about riding the horse in whichever direction it was going and that’s great advice. Improv skills come in handy with people with dementia. Play in their world, don’t make them try to fit back in reality. Laugh at each and every thing you can, because if you don’t, then you’ll just cry. The conflicting emotions of having to care for someone who is no longer there, but is still living is so hard and Kimberly did a good job of showing the draining impact it can have on caretakers. It’s a good, but hard book. If you don’t know somebody who has gone through dementia, it might be easier to get through. If you do know someone who has, it might bring up lots of painful memories. I’m choosing to have a good cry and then remember the good memories. Like when my mom once asked my grandma who she was to gauge her memory that day and my grandma responded with, “Well, you’re Old Big One!” My mom will forever have the nickname of OB1 and we’ll laugh and cry thinking about how she got it.
January 22, 2025
Read it with tears rolling down my face. A hard read but would recommend.
July 12, 2016
I'm grateful that Kim Williams-Paisley was willing to write her story and that this issue is finding its way onto bookshelves. However, I agree with another review comment - why was she the one to write this story? At the beginning of the book, Williams-Paisley says that she and her mother didn't have a great relationship, had several issues, and were not close. This doesn't change throughout the book. She lives far away from her parents and missed most of the events she writes about in the book. I understand that her platform will sell more copies, but it seems like the story would have been more fully told by her father or her sister.
I appreciate the honesty with which the story is told, but I was taken aback several times by stark negativity and unkind words about loved ones. Of course, life isn't wrapped up in a bow and so it is helpful to read her honest thoughts and feelings. However, some things were just uncomfortable to read. I read this book because it is a topic that I am learning more and more about, unfortunately, but I finished the book feeling dejected and sad. The first few chapters are very interesting, the middle of sad, and the end is completely frustrating. I kept hoping for a sign of hope - not even for her mom, but that her family was healing. However, I didn't find hope in the book besides a short mention of "God winks."
Again, it isn't bad. There are interesting parts and I'm very grateful that these sorts of stories are being both told and printed. It's good that Williams-Paisley decided to tell her story, it just seems that the angle was off. She kept trying to tell the story of her mother, but she wasn't close to her mother. I hope she will write another book on another topic, as she is in fact a good writer.
I appreciate the honesty with which the story is told, but I was taken aback several times by stark negativity and unkind words about loved ones. Of course, life isn't wrapped up in a bow and so it is helpful to read her honest thoughts and feelings. However, some things were just uncomfortable to read. I read this book because it is a topic that I am learning more and more about, unfortunately, but I finished the book feeling dejected and sad. The first few chapters are very interesting, the middle of sad, and the end is completely frustrating. I kept hoping for a sign of hope - not even for her mom, but that her family was healing. However, I didn't find hope in the book besides a short mention of "God winks."
Again, it isn't bad. There are interesting parts and I'm very grateful that these sorts of stories are being both told and printed. It's good that Williams-Paisley decided to tell her story, it just seems that the angle was off. She kept trying to tell the story of her mother, but she wasn't close to her mother. I hope she will write another book on another topic, as she is in fact a good writer.
October 27, 2016
The last three years of my dad's life he slowly lost his mind. Each day, each week, he and I would discover more pieces of his memory were gone. One day he could remember his pills and the next he was rushed to the hospital having taken an overdose because he couldn't remember that he had already taken the pills multiple times. If I were in his home we could cover it by working crossword puzzles together and talking about the Broncos. But if I were in my own home he would call ten times in a row to discuss the same thing, or he would hear his phone ringing but not answer because he couldn't remember how to operate the phone. I moved him to an assisted living facility where he could be safe, but there were still many painful and sad moments every day. The last year of his life was devastating.
I wish that I had this book then... Kimberly found the joy in her "new' mom -- something I didn't do until a few months after my dad passed away. I wonder if I had read this then... if it might have eased the pain and helped me find the joy. I have that joy now -- I laugh at the silliness of the moments his dementia caused. I wish I'd found it sooner.
So, having told my personal story may seem like a non-review. The point I want to make is that this book is full of hope, comfort and silliness. It is filled with love and joy. It is a sweet and tender book, an open and honest story of a daughter's love for her mother.
Kimberly Williams-Paisley opened her heart and allowed the reader inside. I am so glad that she read it herself as it made the story resonate. It is very real, and she allows the reader to see her heart.
I wish that I had this book then... Kimberly found the joy in her "new' mom -- something I didn't do until a few months after my dad passed away. I wonder if I had read this then... if it might have eased the pain and helped me find the joy. I have that joy now -- I laugh at the silliness of the moments his dementia caused. I wish I'd found it sooner.
So, having told my personal story may seem like a non-review. The point I want to make is that this book is full of hope, comfort and silliness. It is filled with love and joy. It is a sweet and tender book, an open and honest story of a daughter's love for her mother.
Kimberly Williams-Paisley opened her heart and allowed the reader inside. I am so glad that she read it herself as it made the story resonate. It is very real, and she allows the reader to see her heart.
February 27, 2017
Are you happy, Teresa? I read the book.
May 13, 2016
I listened to the audio recording of this book. I think it helped me connect even more, as I'm familiar with the author through her acting work.
Some things made this a better book to me than someone having no experience with dementia. My mother was diagnosed with a form of dementia in 2011 and I've been in charge of her care since then. I've read quite a few dementia based memoirs, but I found this one better because Kimberly and I are the same age. Not having many friends to share this experience with can be isolating, but listening to Kimberly tell her story was like chatting with a close friend.
I really appreciated how Kimberly was so honest with the mistakes both she and her family made, and the difficulty in convincing her father to get more help. This honesty is so important in taking on dementia. It is an extremely draining battle and many mistakes will be made, no matter who is doing the job.
I found the final chapters resounded the most with me, and found her reflections on dealing with her mother's illness to be enlightening.
Some things made this a better book to me than someone having no experience with dementia. My mother was diagnosed with a form of dementia in 2011 and I've been in charge of her care since then. I've read quite a few dementia based memoirs, but I found this one better because Kimberly and I are the same age. Not having many friends to share this experience with can be isolating, but listening to Kimberly tell her story was like chatting with a close friend.
I really appreciated how Kimberly was so honest with the mistakes both she and her family made, and the difficulty in convincing her father to get more help. This honesty is so important in taking on dementia. It is an extremely draining battle and many mistakes will be made, no matter who is doing the job.
I found the final chapters resounded the most with me, and found her reflections on dealing with her mother's illness to be enlightening.
May 26, 2016
A heartfelt tribute to the mother-daughter relationship: dealing with a PPA-dementia diagnosis, change in family dynamics, and love and support throughout the journey.
Many of us have a family member going through something, no matter what chronic, incurable disease a family member may have, this book can lift one up and help to find you're not alone. It's a road not easily traveled, many battles along the way, but the insights shared help to better understand everything going on from a fresh point of view.
Bravo for sharing her family's story and showing us "where the light gets in." I'll never look at a gold paperclip the same way again.
Many of us have a family member going through something, no matter what chronic, incurable disease a family member may have, this book can lift one up and help to find you're not alone. It's a road not easily traveled, many battles along the way, but the insights shared help to better understand everything going on from a fresh point of view.
Bravo for sharing her family's story and showing us "where the light gets in." I'll never look at a gold paperclip the same way again.
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