Caregivers Books

This book is a valuable resource to anyone who is caring for an elderly family member. While reading the often funny, always touching, occasionally horrifying memoir, I learned so much about caring for my aging mother. This is rich with advice, examples, and brilliance. Thank you, Jackie, for sharing your story with us. I will buy more copies and give them to my friends whose parents are approaching the age where they'll need some care. I am also now taking assessment of my own behaviors as I get older; I don't want any of my bad habits following me into my golden years! It is clear from your Jake Tales that these habits may become exaggerated as we get older and I don't want my kids to have to deal with me if I'm going to be difficult

This is an excellent book for those who find themselves frustrated by the behavior of elders who are suffering from just enough dementia to be wreaking havoc, but not enough to be institutionalized. I read the book in one evening because I was desperate to learn how I might deal with an elder's belligerent outbursts, illogical thinking and unwillingness to accept help. The author faced similar issues with her father and her examples rang 100% true to me. At the end of the book, the author provides specific techniques and tips for modifying the elder's behavior. I tried some of her suggestions the very next day, and it worked! The sense of calm that I gained, knowing that I now had a "toolkit" of resources and ideas from this book, was invaluable to me. Save your sanity - get this book if you are dealing with demented elders now, or think you might be in the near future!

As a professional caregiver coordinator for a local Area Agency on Aging I read a lot of books on caregiving and Alzheimer's disease. This is the best book I have read on the subject. The story is told with humor, but it is full of excellent tips and education on the subject. A must read if you are a caregiver caring for an Alzheiemr's loved one.

I got this wonderful book about a year after my mom passed. I still refer to it so much that it is dog-eared, for information, resources and to enjoy Jackie's humorous writing style. (Okay, I admit it, I stole her idea of quoting artists and thanking them!!! I thought that was brilliant and it added a whole new dimension of enjoyment of the book for me!!!)

The book really helped me understand that the many feelings I went through while my mom was ill were NOT abnormal, and that my attempts to help were not in vain, although with this resource, I could have figured out even more and better things to do - - especially calling in APS early on. I truly think my mom's frequent infections were caused by lack of cleanliness at home and I COULD NOT get my parents to accept help with cleaning. I even hired a geriatric care manager, who recommended services that my parents would not accept. I think I would have been able to get them to accept a lot more services had I read this book first - - or at least I would have had some ideas to try.

I had the additional drawback of living 1500 miles from my parents, which is why I ended up hiring a geriatric manager (who saved MY life by just BEING there so many times when I needed someone to talk to, which Jackie points out is so important - - to have people to talk to about the elder you are caring for.) But I found that even on two extended trips to be with my family, I was unable to get the concrete results I wanted. That's why I think involving professionals, such as APS and the police, would have been so helpful if I'd thought of it at that time.

In a nutshell, this book made me feel like I was hearing from a very dear and knowledgeable friend with reassurance on a most confusing and difficult situation. I continue in my quest for info on elder care, but this remains far and away the most helpful and most enjoyable book I have read on the subject. Thanks Jackie!!!

This is a good book for anyone trying to help elderly parents. I found the style of writing, relating all things to old tv shows, sometimes distracting and confusing but the information in the book was so worth the read. It gave me strength and focus on dealing with my Mom. I am still continuing to find resources through this book and it is really a valuable tool.

"Am I doing the right thing?" Every adult child of a family member requiring eldercare asks this question. The Complete Eldercare Planner will help today's busy caregivers with medical, financial, and personal issues by condensing hours of research into a concrete plan of action. In one volume, readers will learn about emergency preparedness; how to tell when your elder needs help; talking about sensitive subjects; sharing the care; long-distance assistance; money and legal matters; health and wellness; insurance; housing; safety; transportation; maintaining quality of life; aging with a disability; death and dying; and more.

This carefully designed guide also presents material in an unusually accessible way, with dozens of checklists, step-by-step mini-planning guides, lists of low-cost/free resources, website index, questions to ask with places to write down answers, spaces to record elder's vital medial, financial, and personal information, and more.

This book is full of clear, common-sense talk, just the thing I needed when I bought it. Dealing with an aging parent can be tricky in the best of circumstances, and at worst can threaten the whole family structure. The level-headed advice in this book can help to keep things on track, and can help family members to develop the best plan for dealing with their particular situation, as it did with us.

I did a "speed-read" of the book in the 24 hours before a family conference. I did note a fair amount of repetition of ideas in the book, but that is not necessarily a bad thing: if you're reading just the chapters that seem most relevant, then that's where those ideas need to be mentioned. One bonus: reading the book made it clear to me that I need to be doing some elder planning for myself, and with my own children, to make things easier for them later.

For those who have been, or will be, managing the health and financial welfare of your elderly parents, this book provides very helpful and detailed guidelines on how to do this with tact and compassion, as well as providing numerous resources. I ordered copies for all of my siblings. Best resource I found on the subject.

7-22-05 -- Recently I found myself along with 3 other siblings and spouses thrust into new uncharted waters in a totally new season of our lives. Suddenly and without any training we were and continue to this day having to take care of my aging parents. I for one will freely admit that as a child I was never trained, prepared, nor exceptionally gifted to undertake such a task. It is just not the type of thing that you can ever really get to a line and say ready...set...go...and do it very well. Elderly health care in 2005 does not always afford us the luxury of any long preparation either emotionally or financially.

Suddenly unmercifully and usually without warning you hear over the phone in the midst of a busy American routine those words you dread. It's Cancer, a stroke, or replacement surgery, just minor or major operations which means weeks of homecare and hospitalization's, etc., You are suddenly no longer swinging a few bats warming up in the on deck circle there in safety at a bit of distance. But you find yourself thrust into the batters box. You are no longer the stand by just in case fill in player who dressed for the game just in case you would or might be needed. But suddenly with a phone call, you find yourself thrust without any prior warning into the batters box. You are to take charge with 3 others voices and votes, your parents primary healthcare.

Now, if you call a frantic call for "HELP" in the middle of the night when just the week before things were okay a warning, well then, you're doing better than we were. You find yourself suddenly up at the plate with bases loaded, two outs, bottom of the ninth your teams behind 3 runs. To top it off you're facing a 94mph fastball pitcher who also throws a mean slider called the reality of life. You have never been good at hitting these kinds of pitches. Much less being the homerun hitter the team needs at this moment and are all looking to you now for. Then you hear through your wife there is a book available on just such a thing. It allows you to calmly and logically check out all of your options. It tells you in simple language just how you go about walking through this difficult mine field you've been thrust into without training or any real prior warning. It tells you how to do this without losing your mind, your family unity, and most of all your parents dignity.

I found myself literally reading the pages of Joy's, "Elder Care" wonderful "How TO" book on the plane going headed to Florida. I was then going there for my Dad's 80th B-day party as well as a visit to help out for 10 days at my elderly parents. Little did I know then, that I would see those 10 days turn suddenly into 46 long and hectic days I ended up spending there. Little did I realize as I paged through this how to book on Elderly Care that it would be like a daily Bible to me. I was literally reading a chapter ahead of the events as they unfolded in the next days. It was giving me the answers to question I had not yet asked, but found myself doing so in the next days to follow.

As a former Eagle Scout, USMC SGT., Police Officer, Business owner, 20 years as a Lay Minister and being Happily Married to the same woman for over 26 years now, I'd received lots and lots of great training. Even you will have to admit that this background covers a lot of diversified and really good training. But nothing, absolutely nothing, but my Faith prepared me emotionally, physically, or all of us financially for the events that would suddenly and totally unwelcomed show up in the middle of the night. They just seem to attack you without ceasing on these issues when it's "Your Mom or Dad."

Thank you Joy, for the time it must have taken you and the wealth of information this book contains. I personally know that it was truly a Godsend at a time of crisis in our lives. It still today continues to guide us along these slippery slopes. But because of this well timed work of Mercy and Grace, we have maintained as a family, and continued to allow my parents their Dignity and somewhat their independence. I believe this book will help answer the question of the heart on elderly care and give you practical and timely information to steer you to through the minefields of elderly care life. You should have a copy on the shelf in your own homes and be reading it now, if your parents are near or reaching retirement age.

We waited and it caught us totally by surprise. But it didn't catch Joy by surprise...I personally believe that she was obedient to the Spirit of God to produce this work for a time such as this. Our generation will Thank Her one day I believe for her unselfish actions in writing this Elder Care "How To Bible" for the uniformed. The Word of God says that "...my people perish for a lack of knowledge..." I believe that this book is full of knowledge that will help us all in our moments of crisis and bring life and health to all who read it.

Thanks for listening to my lengthy review and a very special Thanks to You Joy. You just keep on writing Joy and we will keep getting filled with the great knowledge we all need and can practically use for our loved ones. God Bless you and again... Thank you from our families hearts to yours.

God Bless You,
David D. Spaulding

My mother in law needs so much care and we had no clue on what to do. We bought this book and we bought the 36-Hour day. We are completely sure now that we are making the right choices because of the tips in both of these books. I recommmend this book highly.

If you have lived thru what Ms.O'dell is writing about, you will appreciate this book more. However, if you haven't you can still love it.I have lived it and she is so honest--she put into words all the ambivalent feelings I had caring for my mother. I would not have traded the experience for the world but no one understands like someone who has been there. I laughed and cried and exorcised my guilt. Thank you Ms. O'dell....my mom's spirit was right there with me when I was reading. The only thing that that would make it better would have been our moms writing a chapter from their point of view. I often looked in my mom's eyes seeing her lost but unable to tell me what was in her brain.

Carol wrote a very heartbreaking memoir..she says on the cover Mother Mother a daughter's humorous and heartbreaking memoir..I did see some humor but I also saw a very vibrant picture of Carol's Mother. I read some--reflected--read some more--as I got closer to the end of the book I read it straight through. I strongly recommend this book to anyone who has a loved one that has Alzheimer's--the beginning, middle or end of the disease and I recommend this book to anyone that has a loved one that is dying. Carol has a list of recommended reading in the back of the book and a list of many organizations that might help someone who is looking for help.

Caring for a parent with Alzheimer's must be devastating. The disintegration of personality, the abusiveness, and the confusion. It calls into question the whole notion of sanity. When Carol O'Dell's mother adopted her, she insisted that Carol would be taking care of mom when she got old. As the Alzheimer's set in, so did the promise. As mom becomes more abusive, this commitment feels almost overwhelming.

As the disease advanced, O'Dell became more immersed in her mother's daily care, but with less and less emotional reward from a mother who no longer recognized her. And what about O'Dell's husband and kids who also wanted her attention? It is strange going from the craziness of caregiving for mom to the normal concerns of kids and husband.

While most of us who are not in the situation would probably rather not think about it, this strange stew is part of the human condition. One of the reasons I read memoirs is to put myself in another person's shoes, and experience what their world is like, and Carol O'Dell's book has given me that, an intimate look at this most disturbing experience.

In addition, she has offered me a sort of hope, in a surprising direction. Carol O'Dell faced the painful situations, she used writing, both to eloquently communicate to the reader and also to contain and absorb some of her own experiences. She talks in the book about walking out to the river to center herself after an especially painful bout. I also can feel her retreating to her room and writing in her journal.

I believe the act of writing is the opposite of Alzheimer's. It doesn't cure the disease, certainly, but it helps establish or re-establish the sanity and purpose of life, so that we can stay alive, energetic, and hopeful despite such horrific and confusing setbacks. Writing about inhumane situations creates a sort of humanity of its own.

I thought "Mothering Mother" was enlightening, encouraging, humorous and heartwarming. I read excepts from it out loud to my husband and he asked me if Carol O'Dell was writing about her mother or MY mother! My Mom, the Ancient Toddler, has quite a few of the traits that Carol's Mother had. Carol doesn't pretend to have all the answers, but she does a terrific job exploring and writing about the many emotions a caregiver goes through. I'm SO glad I read this book!

I can't tell you how much of an impact this book has had on me. I'm also a daughter caring for her mother and it was almost like I was reading my own thoughts. It was just so extremely comforting to know that I'm not alone with the thoughts and emotions I'm experiencing as my mom fades further and further away from me as Alzheimer's takes over. She's in the later stages of that dreadful disease now. This book was written with such honesty and raw emotion. It has greatly heartened me to know that maybe some of my own thoughts aren't so bizarre after all, and that maybe I really can make it through this without completely losing myself along the way. Thank you so much, Carol, for sharing this part of your life with us. You are truly a gem! I wholeheartedly recommend this book.

Nearly five million in the U.S. live with Alzheimer's, and the author is a child of an Alzheimer's sufferer - a journalist who signs on as a caregiver at an Alzheimer's facility in response to her mother's illness to better understand the condition. Her memoir provides insights into the field of dementia care and offers many poignant survival tactics and even a hopeful story. Highly recommended for both health and general interest lending libraries.

Diane C. Donovan
California Bookwatch

I would give this book 4 1/2 stars if it was available. This story was moving and funny all at once. I just thought it was a little long. It gives you a real inside look at Alzheimer's and you see that even in the midst of their dieses they have a life and are still people. I really enjoyed getting to know the people of Maplewood. This is a great story for anyone who is dealing with or knows someone or has an interest in Alzheimer's.

After much deliberation, praying and consideration, my brothers and I recently moved my mother, who is in the late stages of Alzheimers, away from her home of 39 years to an Alzheimers facility. The anticipation was so much worse than the actual move. My mother has never looked back, and loves the facility because of her interaction with others. Lauren's book really opened my eyes, and I praise her for her work. My mother's facility also has a lady who carries two dolls around, and now I understand!!!

When I was told my Mother had early stage altzheimers I was at sea. I bought three books on the subject and while each had a different "slant" for those who are watching this terrible disease they were very helpful in finding out what was happening and what I could expect. This book, tho but everything into human terms. It is a companion book to "Learning to Speak Altheizmers" . I highly recommend this book to anyone who is trying to learn more about what happens to a family member as they go on this journey.

This book really touched me in many, many ways. From the personal level, the relating to Lauren's job, and in the residents that Lauren took care of. Sometimes I had to put the book down from a few minutes--to a few hours to allow me time to reflect. Thank you Lauren for sharing your experiences with us the reader. I look at Alzheimer's disease in a better, deeper way then before I read this book. :)

Leal has done a fantastic job putting faces with a disease that most people know nothing about. She puts the reader right in the midst of the agonizing decisions that people with Huntington's disease have to make.

Since the disease is hereditary, should those with a history of Huntington's in their family get tested for the gene that causes the disease? Should those with the disease have children knowing that they could pass the disease along to the next generation? When, if ever, is it time for the person with the disease to move to a nursing home?

I didn't know anything about Huntington's before I read Leal's book. After reading it, I have a deep appreciation for the struggles that families face after a positive diagnosis.

If you are looking for a book about Huntington's that doesn't gloss over the hard parts of life and yet at the same time shows you what faces of courage, hope and faith can look like during trials, then this book is for you.

I am in the early stages of HD and I can understand the negative review. My wife has promised me that if my mind becomes that of a four year old, she will not dress me as a four year old and take me to an amusement park and allow strangers to photograph me. I know at that time I might not notice the loss of dignity, but I care now. If we do go, I want to go as an adult with HD, not wearing a "Goofy" shirt. The author seem insensitive to me.

As a healthcare professional I've worked with a few hundred families touched by HD over the last 17 years. Among those families, this book "Faces..." is known as a tool for hope, support and inspiration. I have purchased many copies of this book over the last few years and given it as a gift to families.
The positive reviews here clearly reflect the overwhelming praise that this book reliably receives from folks touched by HD.
I respect the views of the folks who've posted those negative comments. HD is the worst damn disease that can touch a family and it manifests itself in unlimited ways. And everyone handles it in their own unique way. However, it would be sad if a family looking for a source of hope like this one turned away from it because of those comments. The overwhelming percentage of folks who've read this book talk about it as an important source of hope and support for themselves.
Read it and see for yourself!

I just re-read Faces of Huntington's and decided it was time to write a review. I am so thankful this book was written and published. Again I was amazed at the author's sensitivity and her ability to pack so much into one book. For far too long there was nothing written about this disease except what was in a medical book. There was certainly nothing about the people themselves. I liked how so many people were included and not just the author. This gave us a much more complete and accurate picture of the disease from all sides.

I was amazed to read the negative review. I understand that not everyone sees the glass half full versus the 99% empty the person who reviewed the book sees. But the review seemed more an attack on the author's character rather than on her work. I feel really sad that someone is so bitter they can't see anything but ugliness no matter where they look. Makes me wonder did they really read the book since in the book I read had stories about suicide, abuse, juvenile Huntington's, death and other real effects of this devastating disease. When I read the review I wondered why this person doesn't write their own book filled with their 42 years of experience.

Faces of Huntington's is one of those books I know I will go back to many times over the years and will recommend to others.

I have purchased the book Faces of Huntington's,read it,and recommended it to friends.
This was a book that needed to be written.
For the first time I was able to read stories of other people dealing with this disease,like I am.
It is a book that is very easy to read.
Not all stories are sad , and that was encouraging.
You will find ways to handle your problems by reading how others have.
I found my self re-reading the book many times , its comforting.

A great help. Full of factual information and practical tips from parents who've "been there." It's a valuable resource for those of us who have a child who has been diagnosed with leukemia.

I was loaned the 2nd Edition in the hospital after our son was diagnosed with ALL. This book is so valuable to the family to help you learn and weather through all the processes you could face during this difficult time. I knew I had to have my own copy and bought a second copy of the 3rd edition to share with other families through the hospital. Many other members of our family intend to buy their own copies of the book as well.

If you are hungry for information, buy this book. It calmed my nerves and made me a better team member in my son's fight against cancer.

Our Son was diagnosed in April of 2006 with ALL Leukemia. Trying to understand all of the terms, meds and schedules is hard enough. This book is written by a Mom with the help of her Doctor's expertise. It puts very scary helpless feelings in laymen's terms. This Mom goes into detail on how to comfort and successfully treat your child. She gives you her experiences on what works and what doesn't and what to expect. It is also an up- to- date book, whereas many books were written years ago. As a Mom who has gone thru 7+ months of this diagnosis, I wish someone would have given me this book the moment our Son was diagnosed. It's great for the whole family to read as well.

As a grandparent of a recently diagnosed 3 year old with ALL leukemia I have found this book an important resource for me to understand the treatment for this terrible disease. The descriptions of the types of chemo used and its side-effects have been particulalry valuable during the early months since the diagnosis. The book is comprehensive with all aspects of the disease and is full of anecdotal and suggestions for coping with this disease at all phases of treatment. It also offers lists of available resources to be accessed. I highly recommend this book for parents, family members and caregivers.

I have been a survivor of ALL Leukemia for 23 years now, and really wish there were books like this then. But now is when all these books are coming out, I am trying to find a book or information on how long term survivors can cope with the long term issues we face.

Topics like planning for college, buying a home, saving for retirement. These are issues my mother addressed with me, and now it is too late to start addressing these issues for me. For others it is not to late. We are surviving longer, and this is a new arena for the doctors and social workers need to address.

The author writes of her father's decent into Alzheimer's Disease (being more
and more child like in his progression of the disease and her young son growing up from a toddler to young boyhood..the opposite ends of the spectrum. A very moving book. I may reread this one.

In September 2004's Australian Reader's Digest, the story "The Unlikely Gift" had me in tears. It moved me so much that I searched out and ordered the book it was taken from - "The House on Beartown Road". I had been mourning the
death of a favourite and much loved friend who died from the ravages of a similar brain disease (vascular dementia). Although her body died recently, the soul and the entity that I loved which made her who she was, was taken from me many years ago when the diagnosis was made and the slow but inevitable slide began.

My friend Kath, whom I met in 1980, taught me joy and sharing, she took me into her family as if I was one of her own. As I am of a different background, she taught me to enjoy roast dinners and chocolate ripple cakes. She was a favourite auntie, a surrogate mother and most of all, a best friend. In the later years, I have been unable to be in her presence,
as I couldn't reconcile the angry, violent person as being the same caring friend I had known. She was diagnosed in her 60's which is much too early and didn't allow her to enjoy her twilight years with those she loved and who loved her.

Elizabeth Cohen's book is a beautiful and simply told homage to the reality of family life and in my opinion, a must read.

What a wonderful book. I have noticed that many who review this book are intimately involved in Alzheimers, be they professional or private care-givers. I don't have anyone in my immediate family with Alzheimers, but I read this as a potential gift to a friend who does. I am grateful that I was motivated to read this lovely, loving account of a disease and the way if effects those who are near it. The author and her family serve as reminders that love comes in all forms, and may be asked of you at the most inconvient moments. Don't wait until you have Alzheimers in your family to read this book. So much gentle learning to be done, so much joy to be given, so many miles we go, travellers through life.

Few books have brought me to tears. This one did. The author writes in a matter-of-fact way about the heart-wrenching disease of Alheimer's, its impact to her life, and the lives of those around her. I didn't want the book to end. It is a quick read. Great book.

I found "The House on Beartown Road" shelved in our local library (Pound Ridge, NY) under Mental Health/Alzheimer's. I don't know who decides these things, but this wonderful memoir ought to be prominently placed along with other contemporary memoirs. Elizabeth Cohen is a fine writer and she deserves recognition for this generous tribute to her 80-year-old father, Sandy, to her daughter -- one year old Ava, and to new-found neighbors on Beartown Road and to friends in the Binghamton, NY, community. Sandy and Ava of these are at opposite ends of the verbal spectrum, one forgetting language and the other learning. Elizabeth Cohen herself is there in the middle, somehow trying to work full time as a reporter, managing day care for the two people who depend on her, figuring out how to survive the winter in one of the nation's true snow-belts, and keeping her own sanity as a harrassed single mother.My own mother is 97 with Alzheimer's and I have a one-year old granddaughter, so this book is close to the bone in many ways. I tell everybody about it. I use it in the memoir course I teach. I want to keep it to survive as a classic memoir and as a year-long account by an un-self-pitying caregiver. Elinore Standard Pound Ridge, NY

This is an awesome, easy read book. Just perfect for the caregiver you know! It is uplifting. Strength is renewed on every page! Caregivers everywhere need this on their night stand or breakfast table!

This book is small enough to fit in most purses, so I take mine with me everhwhere I go. It is especially helpful when waiting in doctors offices, hosptials, etc. I would recommend it for anyone who is a Caregiver.

Thenty-Third Psalm is a book of hlpful information and uplifting stories. I enjoyed it very much and brought one for a friend.

If you're a caregiver, or you minister to caregivers, you will be blessed by the stories and compassion within the pages of this gem.

Carmen Leal understands that even the most loving, committed caregiver experiences a sense of isolation and exhaustion. The Twenty-Third Psalm for Caregivers reflects her sense of empathy. She has walked in those shoes, and writes: "A caregiver's job often seems thankless as we bathe, feed, comfort, fight battles, cut through red tape, and give direction. I'm sure our heavenly Father, our Caregiver, often feels His job is thankless as He cares for us."

Fifteen stories represent fifteen distinct facets of God's own character as He lovingly and gently shepherds us, including The Shepherd Who Cares...The Shepherd Who Directs...The Shepherd of Peace...and The Shepherd Who Heals. Carmen shares stories of her own caregiving experience, as well as the experiences of others who have walked this long, tiring road. Through it all, she weaves a golden thread of hope and healing. For an inspiring introduction to the book, view this Flash movie:
http://thetwentythirdpsalm.com/movie

This is book 1 of an exciting new series by Carmen Leal. Beautifully designed and small enough to slip inside a purse or briefcase, it's inspirational reading at its best. Even for those who are not living the life of a caregiver, The Twenty-Third Psalm for Caregivers offers a beautiful glimpse into God's heart, and how completely and personally He loves us all.
~Bonnie Bruno~

Paul Jellinek's Promise to Mary chronicles the author's travels through the northeast, south, and Alaska, capturing the spirit of "Faith in Action," a loose confederation of interfaith religious congregations who mobilize volunteers to care for the elderly and homebound. Told in the form of refreshingly original vignettes, an engaging portrait emerges of care-givers and receivers. We see the lines separating them often blurred, with some drawn to this calling by traumatic life events, leaving an indelible formative imprint on their life's experience.

Begun in 1993 through a series of nationwide grants awarded by the Robert Wood Johnson Foundation, the groups were started through seed grants to fund a paid executive to coordinate the volunteer base. The author's visits reveal that most of the original 25 have flourished more than 20 years, melding into the bedrock of community service in their individual locales.

The author skillfully remains the unobtrusive central character, through whom these voices are heard. The human toll exacted over a lifetime is examined in stories woven in a distinctly compassionate literary style. The author's gently probing questions are genuine and heartfelt. He gives voice to those whose eloquence, stifled by their infirmities, reveals their quiet perseverance and he allows them to express simply stated life-affirming truths.

Dr. Jellinek celebrates the nobility and dignity of those who populate the book. The overriding tone is decidedly redemptive and hopeful. Stories of great courage emerge as the unsung heroes of local community service manage time and again to marshal their inner reserves, drawing upon a fragile yet durable support network woven of member interfaith congregations and faith communities. These are ordinary people doing extraordinary things, largely under the radar. The stories call to mind the importance of small deeds which loom large in the lives of those whom they touch.

The nonthreatening imprimatur of "church" is time and again the narrow margin breached by wary "forgotten souls" who tentatively reach out for much needed help. Their simple but profound acts of faith and trust are to what the program owes its success.

This book should be required reading, especially for those embarking on a career in social work or community service. To read it is to be infused with a sense of all that is possible and to have one's faith in humanity restored, through a rare glimpse into the heart and soul of some of the finest people one could meet. The author succeeds in focusing a deserving spotlight on those remarkable people who populate our everyday lives, but whose heroic deeds are largely unknown, except to those whose lives are quietly transformed by their gentle presence.

This is a book whose power lies in the gentle yet compelling individual stories which emerge, revealing the humanity which lies within all of us. It is also a compelling journey of personal discovery for the author as well as a wonderful historical record of Faith in Action.




Dr. Jellinek documents the sustained viability of what remains a simple but profound formula for success - ordinary people accomplishing the extraordinary, when artificial barriers to human compassion, in the form of preconceived stereotypes are ignored and people are free to relate to one another on the most basic level. By entering this world with Paul as your guide, you emerge hope-filled and humbled by the extraordinary compassion his journey reveals.

Paul's caring and poignant sharing of his journey across the continent and through the years with Faith in Action is one that will warm your heart and hopefully inspire you to look closely at your own community. I will guess that you won't look far to find your own Mary, Gracie, Harold or Eddie Mae. But stop and look farther. Find what it is you can do in your own community and with your own neighbors to help - with or without a Faith in Action project. Paul will tell you from his own experience as a Faith in Action volunteer for many years, that you will get so very much more than you give.

Thank you Paul for writing this important anthology once again proving what a small group of very committed people can do.

Paul Jellinek is a masterful interviewer and storyteller. The amount of depth and detail he was able to uncover in the lives of those he visited in just a few short hours is incredible. For those who take time to assist neighbors in their communities, it is an affirmation. For everyone else, it is compelling work of non-fiction that will keep you reading on and on. It is truly inspirational. I would recommend this book to everyone.

This is a book with a mission. It accomplishes its mission and then some. It spreads the word about Faith in Action, a successful, 15-year-old national program that brings together local congregations of different faiths to provide volunteer help to elderly and disabled individuals. Through interviews with administrators, caregivers and those they help, the book enlightens the reader about the program and its life-altering accomplishments.

The interviews, combined with the author's observations, provide keen insight into many of our country's great challenges--racism, poverty, crime, drugs, isolation, loneliness, abandonment. They also show how Faith in Action and its remarkable staff and volunteers take on these challenges and make a difference. The book is instructive, inspirational, and motivating. Undoubtedly, some who read it will become volunteers themselves.

The book's style is entertaining and captivating. The author brings us along on his road trip to contrasting parts of America where he conducts his interviews--New England, the South, and the Last Frontier of Alaska. Through his writing we share the scenery, weather, accommodations, and food he experienced--the good, the bad, and the ugly. (On the good front, I long for a piece of the "...best slice of pie I had ever had at a restaurant." Inquiring minds should see page 217.)

Each interview is a personality profile. We are introduced to a bevy of characters--some endearing, some distasteful, all remarkable. Among the favorites are the indomitable eighty-five-year-old Miss Helen; Sylvia, who once excelled in the study of mold spores and now excels in administering social services; Kim, whose hard life has transformed her into an expert practitioner of compassion; Jamie, a former wild child turned nurse with unique experiences involving death and dying; and Rodney, a former gang member who has yet to recognize his power and purpose.

The book has a rare attribute--a wonderful use of humor. There are more than a few laugh-out-loud moments. Always appropriate, humor is skillfully interjected throughout our journey with the author.

A Promise to Mary is reader-friendly. Because of its clever format--broken out by geography and interview--it can be picked up and put down as the reader's lifestyle dictates. It can be read in one sitting from cover to cover, enjoyed at the beach, or become part of a daily public transportation commute.

I owe a great deal to the book and its author. During my time reading the book, it became my travel companion, making my weekday commute a pleasure. My faith in the goodness of human beings has been reinforced. And I have added one more goal to my list of things to accomplish--becoming a Faith in Action volunteer. Thank you, Dr. Jellinek. Well done.

PROMISE TO MARY is a gem. With a narrative style that rings true, the very real characters are as complex and interesting as any in a work of fiction. The author's genuine, but realistic, empathy provides a welcome antidote to the "kumbaya"-tinged works common to the genre. It is enough to provide even the cynic with at least a modest insight into our shared humanity.

This is my favorite book on autism, period. I adore it.

I am a 30-year-old mom with Asperger Syndrome, my 11-year-old daughter has Autism. As such, I have sought books to keep on hand to give to friends who may be interested in reading about autism. I wish I could afford a whole shelf full of this one!

Paul Collins writing is insightful and deep and it flows well - leading from one chapter into the next, it's a difficult book to put down. This book talks about the author's expolration of the history of autism, and individuals who have lived or are living their own unique lives. At the same time as he's following these leads to find out more about his autism, his own son is diagnosed. It's a beautiful story because of the twists and turns, and because of the lives of people it illuminates so graciously.

I was given an assignment in my graduate Humanities class to recommend one chapter of a book for the whole class to read. I knew immediately it would be this book, but had to think about which chapter. After much deliberation (there are many beautifully written stories that flow together in this volume), I selected Chapter 16. The passage where he sits on the steps of a church to cry after meeting the man with the painted lightbulbs illustrates how this book speaks on what it means to be human, it isn't just a book on autism.

Always eloquent, never condescending - if this is the first book you read on autism you'll start with a deeper understanding. Don't bother reading books that bog you down with those who "suffer from autism" - this book, instead, is about human beings.

You won't find the rage at autism that so many parents have experienced, or the accounts of scientific and medical detective work that other parents have undertaken. What you will find is a collection of stories of people in both relatively ancient (Peter the Wild Boy) and relatively recent (Henry Darger) history who might have been diagnosed somewhere along the autism spectrum, interspersed with his experiences of his son, Morgan.

Another way this book is different from a lot of books written by parents of children with autism, is that Collins uses this collection of stories to look at Morgan's life in its totality, thinking what Morgan might be like at age 40, or age 70, instead of focusing on today's trials and opportunities. Collins thinks a lot further into the future than most parents. On the other hand, using history to think about autism, may not be the best way to go, as quite a bit of research into autism and related disorders is currently under way.

If you've already read some books about autism, you might think "Been there, done that" as you read about important people in the autism community like Simon Baron-Cohen and Temple Grandin. On the other hand, this book is unusually free of the anger, drama and tragedy of many books on this topic. Another thing that is useful about this book is to reflect that autism has most likely been around for a long time.

The book is easy to read, and is extensively documented if you wish to go further along the path Collins is treading.

This book was difficult to put down so, even with a 4 year old to look after, I read it in 4 days. I haven't had that experience with a book in a long time! "Not Even Wrong" is extremely interesting and informative on the subject and history of autism and the author's own personal experience with his autistic son is a tender and heartfelt thread binding it all together. Not only did it give me a much better understanding of autism but it had a profound impact on my understanding and respect for the unique way my own mind works, as well as the minds of those around me. By taking a respectful look at the extreme differences of the autistic mind, it helps a person become more accepting of the subtle differences we all have between us that, if we work with what we've got instead of trying to fit a mold, make us so unique and interesting. Along with his talent for describing history, Paul Collins has put his heart and soul into this book.

This is not your typical book about autism, and I mean that as a compliment. As another reviewer said, it's difficult to characterize, but it's very interesting even for someone who doesn't know a lot about autism. Well done!

Not Even Wrong: Adventures in Autism was written by historian Paul Collins, the author of Sixpence House. Apparently Collins and his wife don't have enough sense to be devastated that their happy, healthy son Morgan is suffering with a tragic disease. The kid bounces around exuberantly playing verbal games with numbers and letters, banging on the piano, reading everything in sight, and interacting with his nanny and parents in his own way. He's as happy as Mandy West in Paul West's old classic Words for a Deaf Daughter and just as oblivious that he's actually living in a hellish prison and that there must be a real child in there struggling to get out, etc., etc., ad infinitum, while the parents think he's simply a bright kid with many interests. Who cares if he doesn't answer when you ask his name or play along with dumb "look at the funny monkey" games when there's a much more interesting talking computerized camera in the same room?

In short, the parents don't see anything wrong with the kid, because there isn't anything wrong with the kid. He's just more interested in music, math, reading, and audio equipment than people. A phalanx of experts try to convince Collins that Morgan's in need of vast amounts of therapy to bring him up to "normal", but Collins sensibly doesn't buy it even after he is made to understand that two-year-olds generally have more interest in the above social interactions.

Like Paul West citing stories of famous deaf people, Collins goes back in time to look at historical figures who may have had conditions similar to autism, which the shrinks finally talk him into believing his son is at least sort of, kind of, on the spectrum. He spends a lot of time on Peter the Wild Boy, gets into a bit of Henry Darger and others, and presents us with an endless array of fascinating trivia. Thirty years ago, the obviously devoted Collins would have been targeted as one of those too-intellectual "refrigerator parents" who forced their kids to withdraw into a shell of autism. He talks about Bruno Bettelheim, too -- the guy who faked a psychology degree and promoted the theory that all autism was caused by abusive parents. Bettelheim defrauded the psychiatric community and the public for years, while brutalizing hundreds of children at his Orthogenic School.

Collins looks for (and finds) a way to help Morgan communicate without murdering who he is, using techniques such as PECS picture cards. He also finds an autistic school where the kids are permitted to learn through their own ways and interests. The book ends in almost a parody of the old sunburst-through-clouds, ohmygod-it's a breakthrough fashion when Morgan notices Collins has left the room and yells "Daddy" to bring him back. So those who believe in the sickness/cure paradigm get a Reader's Digest condensed version of what they want, and Morgan remains jolly well autistic.

The book repeatedly and convincingly gives the message that it's a mistake to try to force we autistics to behave as something other than our true selves. Parents of other autistic kids tell Collins about how their kid went through the pink monkey routine when they were mainstreamed, but did fine in an autistic school where they were allowed to communicate in their own way. Simply letting autistic people be autistic is such a revolutionary idea! But I think it will be accepted, along with ideas such as autistic culture, in the very near future.

It is easy to forget that just a few years ago, autism was still being classified as a mental illness (in the DSM-IV, it still is). Part of this confusion is caused by the fact that some psychotic children (made that way by abuse or other toxic life circumstance) behave superficially similar to autistic (cf. Mira Rothenberg's Children with Emerald Eyes). The Journal of Autism used to be the Journal of Autism and Childhood Schizophrenia and the two conditions were constantly being mistaken for each other. Now it is generally acknowledged thanks to Bernard Rimland and others that autism has a biochemical and/or neurological basis and is not a response to child abuse. (I believe it is only a matter of time before multiple personality is similarly demystified.)

As of 2005, most mainstream services for autism are still dedicated to the propositions that autism can and must be cured, and that until that day, autistics must be trained to behave as close to non-autistic as possible. It'll take a while to change, but I believe it will change. And I will live to see it, and so will you. Thank you, Paul Collins, for bringing that day a little closer.