9/21/14 – Thank you to everyone who entered! The randomly chosen winner of a copy of When Caring Takes Courage, by Mara Botonis, was “Linda.” Linda, please look for an email from me!!
As I sit down to write this long overdue piece, I can’t help but be struck by how many wonderful people I’ve met through dementia advocacy. It’s safe to say that as a whole, these are some of the most gifted and compassionate human beings on the planet. Each has a unique story, but those stories are the common thread that creates such a bond between us.
Mara Botonis falls into that category. To be honest, I don’t recall exactly how we first crossed paths; however, I do know we were instant friends. I’m grateful that social media provides an avenue for meeting people all over the country – and the world, for that matter.
A Caregiver’s Handbook
But, I digress. The intent of this post is to introduce you to what I believe is the best resource in existence for Alzheimer’s and dementia caregivers. I know that’s a lofty statement, but Mara’s book, 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.
Around the time we moved my mom to assisted living, the facility’s marketing director gave me a copy of a very well known book on caring for a loved one with dementia. Over the years, I probably opened it three or four times, but always found myself feeling overwhelmed by the pages and pages of information – it was too much. Probably some fantastic information, but the critical bits were buried among too many words. I never did read the book.
When Caring Takes Courage is different. Mara aptly terms it as an “interactive guide” for caregivers, and that’s exactly what it is. Think of it as a caregivers’ 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.
What is Biography Based Care?
The cornerstone of the book is Biography Based Care ®. This approach helps to adapt care based on your loved one’s life experiences, likes and dislikes, and current abilities. Biography Based Care ® 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.
Mara points out very early on that this is a book intended to be USED, not just read. She encourages readers to write notes throughout, “dog ear” pages of particular interest, and even tear out pages for frequent reference.
When Caring Takes Courage includes a plethora of tools you can use to develop a personalized care plan. It begins with a comprehensive Biography to help you gather information about your loved one. As the disease progresses, these pages will be increasingly valuable – a source of ideas and approaches for dealing with new challenges.
Pages Meant to Be Used
Inside the book, Mara also provides 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!
You won’t just read about challenges with communicating, bathing, toileting, difficult behaviors, and wandering. Instead, you’ll get real suggestions on ways of dealing with these things. For example, Chapter 4, “Bathing Without Battling” provides succinct bullet points listing things you can do before, during, and after bathing to help make the experience less traumatic for everyone involved.
While the first section of the book addresses “Getting Through the Day,” the second provides a guide for “Creating the Best Possible Day.” The Biography Based Care ® concept introduced in the opening pages are equally important here, as they allow caregivers to build the day around the whole person, their history, preferences, and unique needs.
Moments that Matter
Mara consistently reminds us to consider the whole person for whom we are caring. That means looking at their physical, spiritual, emotional, social, and intellectual needs as well as their sense of purpose.
Being a caregiver is exhausting, but the latter half of the book will help you achieve some of the balance that is so elusive. It’s easy to get wrapped up in (and overwhelmed by) the ever growing to do list, but it’s important to make the most of every moment. These final chapters will help you make time for “moments that matter.”
You’ll find countless ideas for activities that cater to the whole person’s needs. These include holiday and special occasion activities, but also past times for everyday. Ideas are grouped by interest – pets, music, sports, travel, worship, and many more. If that isn’t enough, the book also comes with an 80-page companion guide titled Alzheimer’s Adapted Activities for Every Interest and Level of Ability.
World Alzheimer’s Month Giveaway!
Whether you’re a family caregiver, a professional caregiver, or a facility administrator, you need this book. In my opinion, When Caring Takes Courage should be part of required continuing education in every memory care facility around the world.
September is World Alzheimer’s Month, and what better way to mark it than with a giveaway!? I couldn’t be more pleased that Mara has generously offered to give one lucky reader a copy of this must have guide to caregiving. To enter the giveaway (***Continental U.S. only, please***), just click below to leave a comment on this post. A winner will be randomly drawn on Friday, September 19th.
Mara Botonis is a 29-year veteran of the senior housing and healthcare industry. Her passion for elder care began at age fourteen when she spent her summer break volunteering at a nursing home. When Caring Takes Courage is dedicated to the memory of her beloved grandfather, Bill, who she lost to Alzheimer’s disease.