As I am researching and writing other posts for this blog – the second post in the series on “Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease” is almost complete – I am also going to be including short excerpts from each chapter in the book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
This book is the only one of its kind. It is written by someone, who like you are or will most likely will be at some point in your life, who has walked step-by-step through the caregiving journey with a loved one.
For me, that person was my mom.
I knew practically nothing about dementias and Alzheimer’s Disease when we started the journey.
But perhaps my mom chose me as her medical, legal, and financial power of attorney, not just because she trusted me – even when she couldn’t remember that she did – and not because I was always, as an adult, in continual contact with my dad and her (and daily with Mama, after Daddy died) and knew what was going on, what they were dealing with or needed, and did my best to take care of those needs.
I think she also chose me because she knew that between my love and protectiveness of my parents, my intense interest in biology and neurology, and the profession I consciously choose not to pursue in spite of a strong desire to do so – genetics – because I could foresee the ethical and moral issues that I was not and would not be willing to compromise on, that I had the advanced research skills and very good scientific background to be the best proactive and involved advocate for her.
Since Mama’s death in August of 2012, I have been actively involved in sharing the hands-on, day-to-day lessons – and information – we learned on our our journey through dementias and Alzheimer’s Disease.
While each type of dementia is unique (which is why I have a “Layperson’s Guide” series on the common types of dementia as well as a guide to the rare types of dementia on this blog), the journey through these diseases is the same.
As I expanded my involvement in education and sharing information to participating in and leading support groups for caregivers of loved ones with dementias and Alzheimer’s Disease, I became aware of the need for You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
The same questions about the steps in the journey through dementias and Alzheimer’s Disease face us and our loved ones. If not now, somewhere in the future.
Not a single person on this planet, with the burgeoning rate of dementias (including lifestyle dementias), will escape having to deal with dementia of some type personally.
The questions are the same. What is this? What does it mean? Is it normal? Where is my loved one in the journey? How do I handle it? How can I help my loved one handle? What can I expect next? How will it end?
You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease answers all of those questions with comprehensive, usable, and practical information you won’t find anywhere else.
I know because I looked for it when my mom and I began our journey. It wasn’t there. But with this book, it is now.
That’s why I’m going to include the whole forward of the book below and why I will excerpt each of the chapters so that you get an inside look at why this book will be an invaluable resource for everyone involved in the journey through dementias and Alzheimer’s Disease.
“This book takes a comprehensive look at each of the steps in the journey through dementias and Alzheimer’s Disease. I’ve seen, in my own experience (I went, side-by-side, through the journey of vascular dementia, Lewy Body dementia, and Alzheimer’s Disease with my mom all the way through the end of her life) and in supporting, educating, and counseling others who are on the journey, that there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
My purpose here is to lay that big picture out in concrete and discrete steps that follow this pattern for each step:
- What is happening
- What it looks like
- How to address it
I cannot emphasis enough that a timely intervention that consists of geriatric psychiatric hospitalization where an accurate diagnosis can be made and a medication regimen to address cognition, psychological issues, moods, behaviors, and psychosis started (it will be tweaked along the way), along with our love and advocacy, can minimize and stabilize a lot of these and increase the quality of our loved one’s lives.
This should be done sooner rather than later. It won’t cure dementias and Alzheimer’s Disease. There is no cure for these neurological diseases. They are always fatal.
However, the proper medication regimen can increase the quality of life for our loved ones in a way that gives them an opportunity to live life as fully as they’re able, to enjoy it as much as they’re able, and to enjoy their relationships with those they love, including us. The goal is to stabilize, not marginalize or invisibalize (being almost comatose is not quality of life), so it’s our job to find the right medical care team to make this happen for our loved ones.
Waiting only hurts them and endangers their lives. And it could end their lives prematurely. None of us want that. So, I urge you to get psychiatric help and medication on board as soon as possible!
The tone of this book is conversational. As I’m writing it, I’m imagining each of you reading it sitting beside me or across from me, as we share a cup of coffee or a glass of tea, talking as friends.
Because we are, even though you and I have never met in person.
I know intimately the struggles you’re dealing with now, as well as the struggles your loved ones are dealing with. I know the sense of helplessness you and they wrestle with. I know the deep, deep desire to fix it, to make it better, to wave a magic wand and make it disappear.
I know the moments of great sorrow and the moments of great joy you and your loved ones share. I also know the great love you have for each other.
And I know the battles you are going to face after this journey is over. It changes you forever. But the lessons you’ll learn are the ones that you will share with others, as I’m sharing mine with you. To not pay them forward is to waste the pain.
If you have not yet read my practical and loving caregiving book, Going Gentle Into That Good Night, please be sure to purchase that as well.
For regular updates and new information on dementias and Alzheimer’s Disease, please subscribe to this blog.
And always, if you have any questions that I can help you with or you just need someone to listen, please email me. I will do the very best I can do to provide you with answers, resources, empathy, and encouragement.”