The 36-Hour Day, by Nancy L. Mace and Peter V. Rabins. Baltimore:
Johns Hopkins University, 2021.
The 36-Hour Day
This is the most recommended book about Alzheimer's Disease. It is required
reading for every caregiver. The first Alzheimer's Association chapter I contacted
sent me a copy of it the first time I called them, and for that I will always be
grateful. Not until I had read this book did I better understand Alzheimer's and
what it was doing to my mother. Read every book you can find on Alzheimer's, but
you'll probably want to read this one first.
Therapeutic Caregiving: a Practical Guide for Caregivers of Persons
with Alzheimer's and Other Dementia Causing Diseases,by
Barbara J. Bridges, Mill Creek, Washington : BJB Publishing, 1995.
This book is indeed "a practical guide" for not only getting through each day, but also making each one better than it might have been otherwise. The chapters on communication and cueing will help in developing skills that will help make each day more pleasant, as will the chapters on preventing stress and managing problem behaviors. I was especially impressed with the "What If" questions in chapter seven, for example "What if you went to bed and didn't know whether it was nighttime or daytime? What if you woke up from a nap in the afternoon and thought it was time for breakfast? What if you became frightened or lost in a darkened room?" (p. 62)--these questions help us to imagine what it's like for an Alzheimer's patient. All of this, plus the day-to-day, eating, sleeping, hygiene, and even exercise, is covered in this book by Barbara J. Bridges, an RN who spent fourteen years caring for both her parents. I highly recommend this book for all caregivers.
Gone Without A Trace, by Marianne Dickerman Caldwell. Forest Knolls, California: Elder Books, 1995.
Imagine your mother wandering off from a school softball game. Imagine searching frantically for her for three years. Imagine her remains being found in the woods where she had died. This happened to Marianne Dickerman Caldwell's mother. Stella Mallory Dickerman was an educated woman who had gone back to get her Master's degree after having her children. She was a teacher, an artist, and a world-traveller. She also had Alzheimer's Disease. At age 83, on a September day in 1991, Stella went for a walk, and she was never seen again. Marianne Caldwell's book about this experience is not only a very poignant and personal story, but it also offers comfort and guidance to families who have experienced loss; and assistance for families who are searching for a missing loved one. With those she used for her mother, Marianne gives a sample query letter, missing persons profile, and letter to a medical examiner. She also lists the addresses and phone numbers for the Alzheimer's Association's Safe Return Program and for State Agencies on Aging, as well as other helpful organizations.
MacDonald, Hugh. Looking for Mother. (A book of poetry) Windsor, Ontario,
Canada: Black Moss Press, 1995. (Dist. by Firefly Books, Ltd. Sparks Ave.,
Willowdale, Ontario M2H2S4 ISBN 0-88753-259-4 ISBN 0-88753-255-1 $14.95)
This book of poetry by award-winning poet and childrens' book author, Hugh MacDonald, is about his mother and Alzheimer's Disease. Hugh takes us on the journey from cherished memories of childhood into the tragic world of his mother's Alzheimer's, yet we still sense the beauty that remained through it all. Several of Hugh's poems from this book are featured in Alzheimer's Poetry at this site. Looking for Mother won the top prize in the 1994 Atlantic Poetry Competition. Hugh's book, Chung Lee Loves Lobsters won the L.M. Montgomery Childrens' Literature Award in 1990. He teaches English and History at a high school near Charlottetown, Prince Edward Island (Setting of Anne of Green Gables--favorite books and movies of mine and my mothers!)
McGowin, Diana Friel. Living in the Labyrinth: a Personal Journey through the Maze of
Alzheimer's. New York: Delacorte Press, 1993.
This amazing book is written by an Alzheimer's victim herself. Diana Friel McGowin began having symptoms of Alzheimer's Disease at age 45. She gives us an inside look at what it's like to have this disease, from the first symptoms noticed, through the ordeal of searching for a diagnosis, to the finality in the diagnosis itself and the daily losses that come. Diana has a wonderful attitude, finding comfort in her memories of simple things: the smell of the small town library of her childhood, the the taste of icicles on her tongue, the sight of the first daffodils of spring, lightning bugs, a train whistle, her grandmother's violin. What a wonderful way to view it all, as she says "I can sometimes enjoy the sweet fragrance of night blooming jasmine when no one else can."
Rose, Larry. Show Me the Way to Go Home.
Forest Knolls, CA: Elder Books, 1996.
This is another fascinating story actually written by an Alzheimer's patient in the early stages
of the disease. Larry was diagnosed at age 54. This came after his getting lost on a trip,
driving more than a hundred miles out of the way of the route to his destination before realizing
it. Like Diana, Larry tries to see the good in this, writing that he has "more compassion for
people, birds, deer, and the like" and he says "If when you read this book you feel a certain
sadness...let yourself be sad, but not for me...I have had a good and prosperous life...Most of
all, I have had the love of some beautiful people...and I have loved them, too." Thank you,
Larry, for sharing this your story.
a
Starkman, Elaine Marcus.Learning to Sit in Silence: a Journal of Caretaking.
Watsonville, California Patier-Mache Press, 1993.
This book features short journal entries and poetry, spanning over three years when Elaine Starkman's life was consumed by taking care of her mother-in-law who had a dementia that was probably Alzheimer's. The first year she took care of her in her home, juggling her caretaking responsibilities with caring for a husband and teenage children. The next two years her mother-in-law was in a nursing home, but the stress was still there. The disease progressed so fast, especially after the nursing home entry. This book takes us from the early stages of dementia through the last ones and death. This is an enlightening book, and one which I helped me. I read it in March 1995 while I was taking care of my mother.
Spohr, Betty Baker. To Hold a Falling Star: A Personal Story of Living at Home
with Alzheimer's Seattle: Longmeadow Press, 1990.
This is the story of a wife's eleven year journey with her husband through his Alzheimer's experience, from the very early stages when he was diagnosed through three very difficult years when he became incontinent, almost immobile, and violent. The nursing home was an option that was always put off with "maybe I can go on a little longer", and then Betty's husband died of a heart attack. I read this book in March 1995 also, and I wrote this comment in a notebook: "This book makes me feel that I too can go on a little longer with things as they are. I just don't think I can put my mother in a nursing home--not yet, and this book inspires me with the kind of love it takes to hold on longer."
Sheridan, Carmel. Failure-Free Activities for the Alzheimer's Patient. Forest Knolls, CA: Elder Books, 1995.
"What kind of activities are there for the Alzheimer's patient?" is a question that comes up often on the Alzheimer list, and one that I'm asked pretty often. I recommend the things my mother and I did (See Activities and Atmosphere) and I recommend this book. Carmel describes all kind of activities: music, exercise, food preparation, crafts, gardening, solo activities, family games, and reminiscence. I especially like the chapter on reminiscence--with the life collage, memory book, memory box, and more. Activities are very important, as is explained in this book's introdution: "The more involved patients remain with the world around them, the more resourceful they becom at finding ways to keep that world for slipping away.
Hodgson, Harriet. Alzheimer's-- Finding the Words: A Communication Guide for
those who Care. Minneapolis, MN: Chronimed Publishing, 1995.
"Finding the words" to communicate with someone who has Alzheimer's is a problem-- especially after many words have lost their meanings to that person. Harriet Hodgson, the daughter of an Alzheimer's patient, has done an excellent job in giving us a guidebook for communicating in the daily struggle all caregivers go through, as she gives us many antidotes from her personal experience with her mother. In this book, we learn about communication at all stages of the disease, the causes of communication problems, and how to "run interference" or "identifying and dealing with the obstacles before they deal with us." We can't fix things; we can't make everything right for the person with Alzheimer's, but we can try to achieve better communication, realizing, as the author says in her epilogue: "It isn't easy for caregivers to find the words they want. Some days we succeed; other days we fall short of our goal. The important thing is that we're trying to improve communication. And that we keep on trying because we care."
Haisman, Pam. Alzheimer's Disease: Caregivers Speak Out Fort Myers, FL: Chippendale House Publishers, 1998.
Pam Haisman is a nurse consultant for Alzheimer's Disease who went on the Internet to gather the stories of caregivers. Her book tells the facts about Alzheimer's, the statistics, and about the research that is being done, but the bulk of the book is the stories of caregivers, as the cover tells: "In their own words families seek compassion, professionals relate frustrations, spouses share their grief, teenagers pledge their love." This book expresses the emotions of caregiving as no other book has, in allowing over 200 caregivers to speak out about what it is really like.
Leal-Pock, Carmen. Faces of Huntington's. Belleville, Ontario, Canada : Essence Publishing, 1998.
Though it's not about Alzheimer's it is about a related dementia. Carmen is caregiver for her husband, who has Huntington's Disease, the disease which my ex-husband's mother and three of his siblings had. This book gives us a lot of insight into the challenges and emotions of those affected by this disease, about which little was known until the past few years. Carmen has done a wonderful job in raising an awareness of this disease through her website and this book.
Gruenewald, Nancy. Grandpa Forgot My Name. Illustrated by Bruce Loeschen.
Austin, MN: Newborn Books, c1997. (Newborn Books, 508 South Main Street, Austin,
MN 55912. Email: nlgrunew@wolf.co.net)
In this wonderful children's book by Nancy Gruenwald, Grandpa came to live with the family because he couldn't take care of himself anymore. Dad helped him dress and mom helped him eat his vegetables, but Grandpa doesn't forget how to eat cookies and doughnuts... and ice cream. This delightful book is based on the author's family's experiences with a grandpa who lived with them for a year before he died. It's message is clear, that caregiving is a rewarding experience though not an easy one, and though the grandpa in the story forget his grandaugher's name, he didn't forget he loved her.
Munsch, Robert. Love You Forever.
Willowdale, Ontario, Canada: Firefly Books, 1993.
"I'll love you forever, I'll like you for always,
as long as I'm living my baby you'll be," was the song sung
to the little boy in the story, even when he was two and had flushed his mother's watch down
the toilet, even when he was nine and never wanted to take a bath, even when he was a teen
and wore strange clothes and listened to strange music, even when he was grown up and lived
across town. So when his mother was old and sick, the man returned her love, and
he sung a similar song for her as he cared for her, and when she died he picked up his own
baby and sung his mother's song of love to that child. A beautiful, touching book
everyone of all ages should read. I read it just before I went home to
be my mother's caregiver, and I cried so hard then; and I still can't stop
the tears each time I read it. Though not about Alzheimer's, it's certainly relevant
to caregiving.
Womack, Dorothy. Passage into Paradise. San Jose: Writer's Club Press/iUniverse, 2001.
I'm sure many of you have enjoyed Dorothy Womack's poetry at her Reflections at Marsha's Alzheimer's Outreach, and here in Alzheimer's Contributed Poetry at this site. Her book is available at all of the online bookstores as well as Amazon. I was amazed as I read her story, which began years before mine, and continued several months after my mother died. I don't think I could have handled caring for my mother as Dorothy and her husband, Riley, did, long after her mother became bedridden and incontinent, still they cared for her at home. Dorothy honesty in this book, expressing all the emotional turmoil she was going through, combined with her strong faith shining through, make this a story we become caught up in. I found I just had to read it all at one sitting, and it is a story that I will want to read again and again. Thank you so much to Dorothy, for sharing this loving and courageous story with us all.
Ham, Jerry. This Stranger in Our House. Spokane, WA: The Inland Northwest
Chapter of the Alzheimer's Association (720 W. Boone Ave., Suite 101, Spokane,
WA 99201), c1999.
Proclaimed the Poet Laurete of the Alzheimer List by members of that support group/ mailing list, Jerry Ham has stirred our emotions and caused us to shed healing tears as we have read his wonderful poems. This book includes Yes, I'll Cry from the Contributed Poetry at this site, and thirteen other poems by Jerry, who is caregiver to his mother who has Alzheimer's Disease. Published by his Alzheimer's Association Chapter in the state of Washington, all proceeds from the sale of this book (only $5.00 per copy) go to that Chapter. I am so proud that other than on the Alzheimer List, my site was the first web site, I think, where Jerry Ham's poems were posted. Other poems by Jerry in my contributed poetry section are She's Still My Mother, My Dear I Love You, A Prison of the Mind, and my very favorite one, which still brings tears every time I read it, A Passing of Memory. If you would like to purchase a copy of Jerry's book, please email Joel Loiacono at djoel.loiacono@alz.org or call the Inland Northwest Chapter of the Alzheimer's Association at (509) 483-8456 or 800-256-6659.
Murphy, Beverly Bigtree. He Used to Be Somebody: A Journey into Alzheimer's
Disease through the Eyes of a Caregiver. Boulder, Colorado: Gibbs Associates, 1995.
In a 348 page book that reads like a novel, Beverly Bigtree Murphy tells a love story-- of a lifetime of love shared in a few years with her husband, Tom Murphy, as he began his descent into Alzheimer's disease. Soon after their whirlwind romance culminated in marriage, Tom's successful career began to decline as the disease they would later come to know as Alzheimer's began it's destruction of his brillant mind and charismatic personality. Beverly soon found herself thrust into the role of caregiver for her beloved new husband, and into legal battles concerning his care, as well as going in circles in search of medical help before the diagnosis of Alzheimer's. The emotional turmoil caregivers know well is shared in Beverly's story, along with practice advice from her as a professional as well as a caregiver. Her book also incudes the stages of Alzheimer's, an annotated list of books Beverly found most helpful, and other suggested reading on grief and positive thinking as well as Alzheimer's and caregiving. He Used to Be Somebody, is a story of unconditional love-- a love that did not end even through all the turmoil brought about by Alzheimer's, and the old love song lyrics at the beginning of each chapter are just one more evidence of this, weaving together the story of Tom and Beverly Murphy and their unending love.
Walsh, Mary B. One Family's Journey through Alzheimer's. Wheaton, Illinois: Tyndale House, 2000.
Going through having a loved one with Alzheimer's is enough, but that's not all that happens to most of us during that time; there are many other family concerns, and so many stories to tell. Mary Walsh tells them all in this wonderful book that will make you laugh at times and cry at others. Mary's husband's grandmother and her Alzheimer's is the focus of this book, and it is around this that most of both the funny and tearful stories revolve. Mary and her family cared for "Gram" during the years I was with my mother as her caregiver. "Gram" died in a nursing home in May 1996, in the month following my mother's death, and there are many similarities. Unlike me, however, but probably like many of you, Mary had the concerns of four generations of family members who were surrounding here. If you are a caregiver or former caregiver of someone with Alzheimer's, I'm sure that you, too, will find much in common with this family's story. Mary presents it delightfully, in a very readable manner which includes conversation, journal entries, and her poems. Through all the tears and the laughter, the family's strong faith shines through, and if you are a caregiver, you will be encouraged through reading this book, and you will know that you, too, can make it.
Hendershott, Anne. The Reluctant Caregivers: Learning to Care for a Loved One with
Alzheimer's. Westport, CT: Bergin & Garvey, 2000.
Anne Hendershott, a professor who teaches about the sociology of aging, found herself unprepared for the challenge of caring for a mother-in-law with Alzheimer's. Combining the personal experience of a caregiver, who had a family and career as well, with the knowledge of a professional, this book can be very helpful to others who reluctantly find themselves in the role of caregiver. Practical information and tips from lessons learned in that role are shared along with this personal caregiving journey. A helpful appendix includes facts about organizations and selected Web sites, and a biblographic essay shares information about helpful books. I am honored, and grateful to Anne Hendershot, for including A Year to Remember among the recommended Web sites included in the Appendix of The Reluctant Caregivers.
Zabbia, Kim Howes. Painted Diaries: A Mother and Daughter's Experience through
Alzheimer's. Minneapolis, MN: Fairview Press, 1996.
Covering a period of eleven years (1982-1993) in the life of one family, this touching book chronicles one woman's Alzheimer's journey through her own journal entries, and the paintings and journal of her daughter, Kim. Treasured family photos are included, for example there is, made in 1982, is a group picture of four generations, including Kim's mother, a former journalist, her grandmother, and her daughter at nine weeks old. There is even a photo of the mother's declining writing, as she wrote "I love you" in the fall of 1989. As the years passed and the disease progressed in her mother's life, Kim, a teacher, artist, and graduate student working on a degree in art, was influenced by the disease in her paintings. Kim's paintings changed as she explored her family's emotional struggle and visualized her mother's feelings in her work. Kim and her mother's journey was aided by their creativity in helping them cope, understand, and express the changes brought about by what her mother called "Al, Mrs. Zheimer's son".
Laminack, Lester L. The Sunsets of Miss Olivia Wiggins. Atlanta: Peachtree Publishers,
1998.
Miss Olivia just sits with her hands folded in her lap and stares, saying nothing. Her daughter Angel and great-grandson Troy visit, and she still sits as they talk to her. She still says nothing, but she thinks of beautiful memories from her past, beautiful as the sunset the nurse had pointed out that evening. Beautifully illustrated by Constance R. Bengum, this wonderful book was written by Lester Laminack, who went to the same high school as I. Though it was published in 1998, I didn't discover this book until Christmas 2001 when I was visiting my sister and she showed me the copy she had purchased. My apologies, Lester, for not including your book in my bibliography and book reviews sooner. It is such a beautiful book, and a wonderful gentle and loving story that can help young and old cherish their loved ones who have Alzheimer's.
Marcell, Jacqueline. Elder Rage: or, Take My Father... Please!
How To Survive Caring for Aging Parents. Impressive Press, 2001.
ISBN: 0967970318 http://www.ElderRage.com
In this highly acclaimed book, Jacqueline Marcell tells her caregiving story, of her raging dementia patient father, of her sweet feeble mother, and of her "Amazing Ariana", the caregiver who helped her through it all. Jacqueline gave up a career as a television executive to care for her parents, but she didn't give up adventure-- as we who have been caregivers know, there are surprises everyday around Alzheimer's/dementia patients. Jacqueline also has an Internet radio show called "Coping with Caregiving", and I've been one of the honored guests! (Thank you so much Jacqueline!) As she interviewed me, I felt such a kinship with Jacqueline, having shared similar experiences, the same emotions of frustration, guilt, and grief, and now, the same mission-- helping others to avoid the mistakes we made in caregiving.
Womack, Dorothy. Alzheimer's Angels.
San Jose: Writer's Club Press/iUniverse, 2001.
Dorothy Womack's poems have reached across the Internet and touched so many people affected by Alzheimer's disease. She has bravely shared her own story, in poem and prose, and she has reached out to others who are living in the pain that she knew as caregiver for her mother. Other children of Alzheimer's parents, spouses of people with this disease, and early onset victims of AD have been honored by Dorothy's touching poems, which have spoken to their hearts and conforted them. In her 334 page book, Alzheimer's Angels, Dorothy has shared over 200 of her poems, including some for Sept. 11, 2001 victims as well as for victims of Alzheimer's. Dorothy's gift has ministered to me as well, speaking to me as from my mother, in her poems "Most of All" and "The Other Side of Midnight". Dorothy's poem "In the Company of Orphans" tells our story, of motherless daughters who have found one another and become sisters. I am grateful to God for Dorothy's influence in my life, proud to have become her "sister" and friend. I highly recommend Alzheimer's Angels, and I know that the verses contained within it will minister to others, bringing healing tears, and giving comfort and strength for the Alzheimer's journey.
Wright, Camron. Letters for Emily: a Novel. New York: Pocket Books, 2002. ISBN: 0743444469
Emily's grandfather has Alzheimer's, but he writes letters to leave for his best buddy granddaughter. After his death, the whole family gets involved in reading the poems left in a book and guessing passwords for finding letters on his computer. A beautiful book about lessons learned in life and about grief, guilt, and forgiveness.
Avadian, Brenda. Where's My Shoes?: My Father's Walk through Alzheimer's.
Lancaster, CA: North Star Books, 1999. ISBN: 0963275216
A beautiful story told by a young successful career-woman who put her life on old for a father who has Alzheimer’s. Like me, Brenda Avadian was in her thirties when her life was disrupted by having a parent diagnosed with Alzheimer’s. In this beautifully written chronicle, Brenda shares that story and also includes a bibliography, helpful Web sites, and a very helpful list of “Ten Suggestions for Caregiversâ€. Wonderful full-page photos of Brenda's father are included in this delightful book that should be on the reading list of every caregiver. Brenda also founded the Web site The Caregiver's Voice.
Rozelle, Ron. Into that Good Night. Huntsville, TX: Texas Review Press, 2000. ISBN: 1881515311
A beautifully written memoir by Ron Rozelle whose father had Alzheimer's. Set in the author's hometown, a small town in east Texas, this account reflects not only on the time Alzheimer's affected his dad, but there are flashbacks to his years of growing up in that town and remembered incidents in his family. This book, deservingly so, was a PEN America West Creative Nonfiction Prize finalist and a Texas Institute of Letters Carr P. Collins Nonfiction Award finalist. It is good relaxing reading as a coming-of-age in a small town story as well as an Alzheimer's memoir.
Bristow, Lois. Will I be Next? the Terror of Living with Familial Alzheimer's Disease: Bea Gorman's Life Story.
Acampo, CA: Hope Warrne Press, 1996.
Most of us children of Alzheimer's parents fear the disease, but we know chances are good that
we won't have it. When Alzheimer's begins to show up in several siblings, it becomes a
frightening thing. That's what happened in Bea Gorman's family. In her book that tells the
story Will I Be Next?, Bea shared her family tree. Not only did Bea's mother, Susie,
have Alzheimer's, but so did two brothers and two sisters. Four out of eight of Bea's
siblings developed early-onset Alzheimer's disease. Her story gives hope to other families
afflicted with Alzheimer's, and the second half of her book, "Help for the Caregivers" provides
practical tips for surviving caregiving. After spending 25 of their 50 years together helping
caregivers, Bea and her husband, Johnny, continue to answer the phone 24 hours a day, seven days
a week, as people call for help.
Cohen, Elizabeth. The House on Beartown Road: A Memoir of Learning and Forgetting.
New York: Random House, 2003. ISBN: 0375507272
I've read and reviewed lots of books on Alzheimer's, but I think I can honestly say this
is the most beautifully written that I've ever read. Elizabeth Cohen (at the time a single
parent) writes of her baby girl, Ava's growing and learning at the same time that she
write's of her retired Economics professor father's forgetting as he descends into Alzheimer's
disease. Set in a rural New York state farmhouse, the events of daily life bring both tears
and laughter, and the helpful caring neighbors warm our hearts. Every time I began reading,
I didn't want to put down this book, and yet, I didn't want to finish because I knew how I
would miss Elizabeth, her Daddy, baby Ava, their pets, Jody the helpful caregiver, and all
of the wonderful neighbors that surrounded them. Highly recommended, a must read for all
caregivers of Alzheimer's patients!
