Reader Reviews

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“If you or someone you know is a care partner for a person living with Alzheimer’s disease or another dementia, “When Caring Takes Courage” will help you cope more creatively and patiently with the myriad challenges you face every day. Mara Botonis draws upon her nearly 30 years of experience as an administrator working with people with dementia and their care partners in various elder care facilities.
She notes with irony that what she has learned inside facilities has convinced her that what she cares about the most is helping caregivers at home—those on the front lines of daily caregiving who need support, encouragement and specific information. To that end she has created a comprehensive and easy-to-use manual that covers nearly every situation you are likely to face as a dementia care partner caring for a loved one at home—from hands-on tips such as how to ease a person’s fear of bathing, to simple but creative ideas for ways to enjoy one’s time “in the moment” with a person living with dementia.
As a self-published book, “When Caring Takes Courage” has its flaws—for example, it could have used more editing for clarity and conciseness, and an index—but it is truly a comprehensive manual for dementia caregivers, written with compassion. I agree with the author that the book might best be used like a “cookbook”—that is, as a resource that you read not all at once but a little at a time as you need it, looking up a specific “recipe” to answer the particular challenge you’re facing that day. And the worksheets—such as the form to evaluate dementia care facilities—seem quite helpful.”
Martha Stettinius, Author, “Inside the Dementia Epidemic: A Daughter’s Memoir”.
www.insidedementia.com/

Capture

“When Caring Takes Courage:”
by Mara Botonis
“This is a book that is meant to be USED not just READ”
No matter how well you know and love someone suffering from Alzheimer’s, knowing how best to care for them doesn’t come naturally. It’s complicated and it’s hard. And it’s a struggle that’s growing in frequency.
The preface of When Caring Takes Courage lays out just how big that struggle is:
•5.2 million people in the U.S. have Alzheimer’s
•80% of them are cared for at home
•There are 15 million caregivers for Alzheimer’s patients in the country
•30% of those caregivers suffer from depression due to the load it puts on them
Nobody’s born knowing how to take care of an Alzheimer’s patient, but millions of people have been thrust into the role suddenly – usually with no training, and a lot of confusion and frustration as a result.
Through her experiences working in senior care and helping take care of her own grandfather with Alzheimer’s disease, Alzheimer’s advocate Mara Botonis started to figure out some techniques that help make the process of caring for an Alzheimer’s patient more successful and meaningful. With the help of some other experts in the field, she put together a book that offers not only instructions and suggestions, but also interactive worksheets to help readers put her advice to use.
The book is divided into two main sections:
•Getting Through Your Day – suggestions and advice for all the everyday tasks and difficulties involved in caring for a loved one with Alzheimer’s.
•Creating the Best Possible Day – advice to make sure the daily tasks don’t become all you see, and that you still have meaningful moments with your loved one and help them enjoy at least some of the day.
Kristen Hicks and Amelia Wilson, Content Manager www.senioradvisor.com

d

“As a certified dementia consultant who has worked with hundreds of families dealing with the effects of Alzheimer’s and other dementias for a decade, what do I like about this book? A WHOLE LOT!!
Mara has taken years of knowledge and experience, and hours and hours of research and compiled it into an understandable, and more importantly, actionable guide for families to use during their journey with a loved one who has dementia.

The organization of the book is logical. It begins with the philosophy of care (Biography Based Care) as the first ingredient of a successful plan to achieve the best care possible for a loved one with a dementia. Then it moves on to give answers to specific everyday problems that caregiver’s experience, such as with communication, bathing, eating and incontinence. Excellent suggestions they are too. The thing that makes this book stand above others is that these answers are easily consulted “on the fly”, meaning in the heat of the battle, and that’s what caregivers need most, instant suggestions to try.
As an extra added benefit this book also provides guidance for issues in the future by providing the needed tools for each family to create their own ongoing plan of care, to be initially completed themselves, and then reviewed and readjusted as the disease progresses. What more could one want? Help for now and a plan for the future based on the individual’s specific needs and behaviors. WONDERFUL!
Finally, Mara devotes the last portion of the book to the most successful method to address what is known as “behaviors”, the actions of persons with dementia that are detrimental to themselves, their caregivers and others. That method is activity/redirection for the person with dementia. It helps keep the person off or on a lower dose of antipsychotic drugs. These drugs are so bad for persons with dementia. They can actually lower cognition in some, and turn others into “living zombies”. Not only does Mara talk about the methodology of activity based behavior modification but gives the reader many specific activity suggestions which can be used by the caregiver. The reader is not left on their own to dream up activities for their loved ones. This is true help!
My final conclusion: Buy this book NOW! Don’t wait another minute!”

Carole Larkin MA,CMC,CAEd,QDCS,EICS, the Certified Dementia Consultant of ThirdAge Services, a company devoted specifically to families caring for a person with dementia. Carole has a Master of Applied Gerontology degree with a specialty in Aging Services from the University of North Texas. She is a certified specialist in “Best Care” practices by both the Alzheimer’s Foundation of America and the National Council of Certified Dementia Practitioners and has worked for the Alzheimer’s Association.
thirdageservices@gmail.com
www.thirdageservices.com

e

“It’s not often that you read a book about dementia care and laugh. But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.”

Deborah Shouse is a writer, speaker, editor and creativity catalyst. Her writing has appeared in The Washington Post, The Christian Science Monitor, Reader’s Digest, Newsweek, Woman’s Day, Hemispheres, Family Circle, Spirituality & Health, The Chicago Tribune and Unity. Deborah has been featured in many anthologies, including more than four dozen Chicken Soup books. Deborah also writes a weekly column on love for the Kansas City Star.

home_cover

“A great, easy-to-understand read, with lots of hints, tips and ideas along with more formal techniques for those who are currently caring for somebody or those considering entering a caring profession. It is not a ‘start at the beginning and finish at the end’ style of book, but a book that can be dipped into at any page or chapter and useful information can be found.

“The forms to make up a biography were both informative and useful. They provided valuable prompts in order for you to pass on vital life information to anybody else who might be providing care and support in your absence. The frequency chart was also useful to identify changes in behavior which had taken place and could provide information identifying the behavior of the person with dementia with different care-givers. The technique identified on p. 58 was something that I adopted immediately after reading the relevant chapter.

The quote on p. 124 is now displayed around my house and has become my motto for when times are hard: ‘‘Step back when it hurts too much, come closer when you are strong enough and be there when you are able so that you can savor every moment that unexpectedly brings back that familiar smile, that well-known twinkle in the eye or the touch of a hand that reminds you of that which will never be forgotten, that Alzheimer’s disease may have changed the love you shared but it will never, can never and doesn’t have the power to ever, erase it.’’

-Angela Rossiter
Dementia: The International Journal of Social Research and Practice

dem.sagepub.com

Website Version of Reader Reviews

“We learned about Mara and her work when her book, “When Caring Takes Courage,” was shared with me by one of my Wisconsin colleagues. It is a wonderful toolkit for caregivers, both family and professional, that provides realistic advice and guidance. The book offers ‘real life’ solutions to everyday situations including checklists and worksheets to assess care needs and create appropriate care plans all centered around person-centered care. Mara is coming to Wisconsin in May (2015) as a keynote speaker at our annual statewide conference. We are looking forward to sharing her expertise, and this book, with our audience of over 900 care providers from across Wisconsin!”

-Kathy Davies, Conference Planner, Alzheimer’s Association Greater Wisconsin Chapter

www.alz.org

alzheimer-scotland

The advice given throughout to plan and understand the skills and deficits of the person with dementia is sound. To prepare for those difficult times means being more aware and is an obvious benefit, but rarely enabled in the way that this book gives opportunity for. Mara offers activities and practical ways of measuring ability and maintaining memories that enable relationships to continue even in the intensity of situations that would strain the strongest relationship. I love the way that Mara has been able to maintain the intimate relationship approach of people that love one another during a time of courageous caring.

Thanks Mara for what I believe has the potential to become a ground breaking book within the field of caring.

-Alan Midwinter, Service Manager, Alzheimer Scotland

http://www.alzscot.org/

memory-people

“Mara Botonis has compiled a brilliant, real life and common sense resource book that everyone that is caring for an Alzheimer’s/dementia patient needs to have. Caregivers all too often find themselves navigating the uncharted mysterious waters of dementia as they lovingly take on the responsibility of caring for someone that has received this diagnosis.

So appropriately named, When Caring Takes Courage, gives the reader solid tips, interactive helps for planning, and valuable information on dementia that sadly continues to be so hard to find. Caregivers need quick, dependable information and they will find it in Mara’s book.”

-Leanne_Chames,_Executive_Director,
Memory People
https://www.facebook.com/groups/180666768616259/?ref=br_tf

brains

“Mara Maitlin Botonis has written this wonderful book, Biography-Based Alzheimer’s and Dementia Care, which provides caregivers with a practical guide for interacting and caring for their loved one with dementia. In so doing, Mara has provided everyone with an “at-a-glance” resource and “go-to” guide. 

Each of the chapters are easy to read and filled with meaningful tips.  Throughout the book, readers will find many interactive tools that they can personalize to help them with planning and providing important elements of their loved ones care. Congratulations to Mara Maitlin Botonis for writing this need to read guide for all

I can enthusiastically recommend this text to all those who are now in the noble and loving role of caregiver. I also encourage the millions of people who are not yet serving in the role of caregiver to read this book to become educated and prepared for a future time when you may be needed.”

-Paul D. Nussbaum, Ph.D., ABPP

Brain Health Center, Inc.
Clinical Neuropsychologist
United Nations Presenter: Brain Health
Co-Founder, Chief Science Officer for Fit Brains

www.brainhealthctr.com

www.paulnussbaum.com

chicken-soup

“I believe this book is the best resource in existence for Alzheimer’s and dementia caregivers. I know that’s a lofty statement, but When Caring Takes Courage just blew me away. To say I wish I could have had a handbook like this 15 years ago would be a gross understatement. Mara aptly terms it as an “interactive guide” for caregivers, and that’s exactly what it is. Think of it as a caregiver’s manual. If you want to sit down and read it from front to back, you can certainly do so, but the real beauty is in the ability to grab the book and refer to a specific topic that might be of immediate concern.

The book is chock full of tools in the form of various checklists and worksheets to help assess care needs, plan activities, document and track symptoms, compare and score care options, create a safe environment, and much more! And it all centers around the concept of “biography based care,” which recognizes that just as each person living with dementia is unique, so is the way the disease manifests itself. Techniques that work with one person may yield disastrous results for another.

Every Alzheimer’s caregiver should have their own dog-eared copy at the ready! I can’t say enough good things about this book!”

-Ann Napoletan

The Long and Winding Road Alzheimer’s Blog
Chicken Soup for the Alzheimer’s Soul Contributor

http://alzjourney.com/

convenant-caregivers

“Hands-on, practical, and creative. Mara Botonis has clearly been on the “front line” delivering care to those with Alzheimer’s Disease and other types of dementia. This is not a collection of “pie in the sky” ideas that have not been tried and tested. The interventions covered in this book offer real life solutions for caregivers. As a care provider, I have read hundreds of articles, books, and other publications on how to care for someone with Alzheimer’s. While most contain good information, they lack the no-nonsense, easy to implement activities that our caregivers so desperately need. Ms. Botonis has proven that she understands the day-to-day struggles of a caregiver in this practical, yet compassionate guide. Thank you, Mara, for putting your years of experience and service on paper so that many might benefit and know that they are not alone.”

-Mike Davis, Owner
Covenant Caregivers

http://www.covenantcaregiversms.com/index.html

alzheimers-speak

“Mara’s book, When Caring Takes Courage, is absolutely fabulous! Few books on dementia are jammed packed with realistic tools people dealing with the disease can use immediately. This book will be helpful to those diagnosed, those caring for someone with dementia both family and professional as well as anyone interested in learning more about how to live well with the disease. Kudos Mara! I wish this book was around when I was dealing with my own Mother’s 30 year journey with dementia. It was a thrill to have you on Alzheimer’s Speaks Radio to help spread the word about your fantastic book. Keep up the great work.”

Lori La Bey, Founder of Alzheimer’s Speaks

www.AlzheimersSpeaks.com

jea-senior

“A must read for caregivers, family members or anyone whose life is touched by this insidious disease. Very insightful with hands on tools and coping strategies. I highly recommend.”

Sue Johnston, VP of Community Relations
JEA Senior Living

http://www.jeaseniorliving.com/

comforcare

“Gotta love Mara!!! I’m a national certified Alzheimer’s educator by the NCBAC and I train caregivers at my private duty home care agency on behavior modification techniques, how to avoid triggers and activities that are interactive, engaging that caregivers can do to stimulate your loved ones who suffer from Alzheimer’s and other related dementias. Old saying, “You don’t know what you don’t know.” I just took some GREAT tangible tips that I can pass on to families and caregivers that deal with this disease day in and day out. Thank you for your insight Mara, what a wonderful book!!!”

-Tino Negri, CAEd, Co-Owner
ComForcare Senior Services

http://comforcare.com/florida/palm-beach-gardens

cognative-dynamics

“This is one of the most comprehensive, compassionate and informative resources available for the caregivers of people who have Alzheimer’s and other dementias. Mara Botonis has done an outstanding job, and her passion for helping others is self-evident on every page. I highly recommend her book, ‘When Caring Takes Courage’ for everyone who is making this journey. “

-Daniel C. Potts, MD, FAAN, Neurologist, , one of Maria Shriver’s Architects of Change, Founder and President of Cognitive Dynamics Foundation and Medical Director at Dementia Dynamics, LLC.
http://www.cognitivedynamics.org/home/

science-for-seniors

“As an activity professional, an international health care convention speaker, author, activity course instructor, and columnist I am always seeking new information on how to best serve people with dementia. This is an excellent book filled with practical suggestions for activity and therapeutic recreation professionals as well as for families on how their loved one with dementia can continue the daily living activities they enjoyed from art to crafting in a format modified for their changing abilities and interests. I highly recommend the book to my readers and convention audiences.”

-Gloria Hoffner, BA, ADC, AC-BC, CDP, Author of Science for Seniors, an National Mature Media Merit Award winner and national winner of the National Certification Council of Activity Professionals First Place Best Practice Award.

http://www.scienceforseniors.net/

sacred-heart

“I have facilitated support groups for family members and h a dementia diagnosis; educated healthcare professionals-direct care workers, nursing, social workers and doctors about Alzheimer’s disease and related dementias.

I have always believed and taught that if you get to know a person’s history – what makes them happy, what makes them sad, what makes them angry, what were they passionate about, what were their family traditions…we can then learn how to effectively and pleasantly communicate witha person who has memory or cognitive impairment, at any stage, on some level.

Mara has done a beautiful job in providing a resource and tool for someone to refer to again and again- whether that person is caring for someone at home or a direct careworker or activity staff needs to figure out how to engage someone in life and activity going on around them.

I find this book to be particularly excellent for activities staff and direct care workers. I will be reviewing this book with my ENTIRE staff…WELL DONE Mara!!”

-Karen Francis, MSW, CDP
Memory Care Consultant

http://sacredheartseniorliving.com/index.php

project-lifesaver

“A great book! Full of resource material and information useful in all aspects of dealing with an insidious disease. A must have!”

-Gene Saunders, Chief Executive Officer, Founder
Project Lifesaver International
http://www.projectlifesaver.org/about-us/