Click below on the new infographic I created to see it in normal size.
This series of posts about You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease began with the forward to the book and an explanation of why I wrote this book and why you should read it.
This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).
The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.
That was intentional on my part for two reasons.
One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.
The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.
And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.
Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.
But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.
And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.
That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.
It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.
Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”
“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.
What does this look like in practical terms?
Repeating things in conversations, stories, and writing
This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.
Frequently losing and misplacing things
We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”
I’ve just written and published my newest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
I’ll include the short summary from Amazon I wrote for the book:
In my own experience with this and in counseling, supporting, and working with others who are going through these steps, I realized there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
I know that because the same questions get asked and answered over and over again.
My purpose is to ask those questions and answer them in a way that, first, makes sense, and, second, works for everybody involved.
I know. I’ve been on the caregiving side of the equation personally. There were no books like this when I did it, so I had to learn on my own and figure out what worked and what didn’t. I made mistakes. You’ll make mistakes.
But, in the end, my mom and whoever you love and are caring for, got the best we have to give and we can learn some pretty incredible and good life lessons along the way.
If you don’t read another book on this subject, you should read this one. I don’t have all the answers, but the answers I have learned are the ones that probably matter most.
Not just now, but for the rest of our lives.”
This book also includes the last step that we take alone without our loved ones: grief. I’ve been there and I’ve done that and although I will never not feel the grief on some level, I’ve learned some lessons that I know will help each of you.