FAQs Re: Alz Book

This section includes Frequently Asked Questions (FAQs) and answers related to the book,  Alzheimer’s--What My Mother’s Caregiving Taught Me.

What is the difference between dementia and Alzheimer’s?

Aged related dementia has four stages which are described in the book.  With Alzheimer patients the dementia progresses into three additional debilitating stages where in the end the afflicted is usually unable to walk, talk, nourish or hydrate themselves and often communicate only non-verbally.

What inspired you to write, Alzheimer’s--What My Mother’s Caregiving Taught Me?

Very simply, the inspiration for the book is my Mother.  Additionally, I feel that through our own difficulty of dealing with the disease we could help others deal with this dreadful disease.  As a result I dedicated a significant amount of time in an effort to leave  something of value from this experience which would serve as a beneficial resource in helping others.

What is the book, Alzheimer’s--What My Mother’s Caregiving Taught Me all about?

The book is intended to be a complete resource for understanding and dealing with Alzheimer’s disease by describing the actual experience my mother progressed though as she experienced the stages of the disease.

What background helped you to write the book?

As a result of returning alive after working for the State Department in Vietnam, my life could be described as “a fearless business career unaffected and non-intimated by pressure at nearly any intensity. Today, I will admit that it was a heartless existence for many years in dealing with the opportunities of life.  During this time however, my life was based on strong desire to be successful based on a rock solid foundation of values, principles, beliefs and behavior established from my parents, their large families, a family business, growing up in a small town and earning a Master’s degree from the University of Arizona.  The most valuable asset in writing the book came from researching and writing my master’s thesis at the University of Arizona.  Writing the master’s thesis taught me how to focus my intellectual efforts and write effectively.

How did you decide on what information to include in the book?

I reviewed my own, my mother's and other patient and caregiver experiences as well as the feelings and emotions caused by the disease.  I looked at the difficulties of sorting though all the information and in turn included data in the book that was most useful.

Now that you have had time to recover from the Alzheimer's Caregiving and your own concurrent bout with cancer, what were your estimated individual expenses for each disease?

I really cannot separate the cost individually. All I know is that the combined cost over seven years exceeded one million dollars.  In the process I lost nearly everything I worked seventy to eighty hours a week for forty years to own.  I feel fortunate to be able to continue to live in the home I purchased over thirty years ago and lead a somewhat normal life with extreme budgetary control.

What is your involvement with the Alzheimer’s Association?

The local Alzheimer Association was invaluable in dealing with issues that came with the disease, understanding Alzheimer’s, necessary care and caregiving.  Everyone dealing with this dreadful terminal disease should be a member of their local Alzheimer’s Association Support Group.

What are the most common problems people face with Alzheimer’s Disease?

The most common problems people face with Alzheimer’s disease are the following:

  • Early diagnosis
  • Accepting and helping the afflicted understand the medical findings and diagnosis
  • Conducting an early estate and resource assessment
  • Completing a long term care plan as early as possible
  • Understand your limits and when you will need help
  • Finding time for caregiver respite
  • Dealing with grief after the afflicted has deceased

What was your writing schedule for the book?

I started writing the book in March 2006 after my cancer surgery at The Mayo Clinic and completed the book May 2009.  Monday though Friday I generally started writing by eight o’clock in the morning and continued until ten or eleven in the evening.  Frequently I would wake up at three or four in the morning, write for a couple hours and return to bed for a few hours before spending most of the day writing except for daily walks, dinning, watching the news or visiting my mother at the nursing home.  During this time, I spent an estimated total time of seven to eight thousand hours researching, writing and editing the book.   

How did you go about organizing the book?

I chose to organize the book with an introduction at the beginning to educate the reader about the national health crisis facing our country  . . .  Alzheimer’s Disease and a summary at the end.  In between the beginning and the end I decided to describe the stages of the disease, my mother’s experience and provide advice to caregivers.  I found it difficult and time consuming to sift through all the information while caring for my mother.  The Appendix elaborates on important information which will be useful for a caregiver. 

In the initial stage I laid out the book’s organization using the outline feature in Microsoft Word 2003.  Later this became the Table of Contents for the text.  Then I started writing.  In the early stage to rapidly capture text I used the Dragon speech processing software.  To break from writing I would scan photos and documents that would be potentially useful at a later stage and be inserted into the book.  Later I abandoned Dragon since it was creating errors which I could not recognize and my editor was getting frustrated correcting all the mistakes.  Dragon did however allow me to rapidly capture a lot of text in a short period of time.

What advancements do you see to treat Alzheimer’s patients?

Better understanding of the genetics and biochemical mechanics of the disease and eventually the development of more effective drugs to prevent the early development of Alzheimer’s.

What were your favorite times during your mother’s Alzheimer’s Disease?

The early stage when my mother moved from Wisconsin to California.  During this stage it was like getting reacquainted with a loved one who lived across the country where I spent my early development years, who nurtured me into adulthood but who had been, except for holidays, apart from me on a daily basis for most of my adulthood. This was a very special time! Then her health declined rapidly right before my eyes. 

 What were your most difficult times in dealing with your mother’s caregiving?

There were four very difficult times dealing with my mother’s caregiving.  The first difficult time was acceptance of the diagnosis from The Mayo Clinic.  The second time was in between the late stage four of normal age related dementia and early stage five of Alzheimer’s when my mother was having emotional difficulties dealing with the acceptance of the fact that she had Alzheimer’s and often cried at bedtime.  The third difficult time was dealing with my own emotions in the final stage seven when my mother could not walk, talk, feed herself, frequently hallucinated and then finally seeing her not able to support her head in the normal vertical position.  The fourth, final and longest period was my own grieving.  However, don’t get me wrong, none of the caregiving was easy.  Today, seven years later I am finally beginning to complete the grieving process.  I am not sure it ever ends!

What is the most important thing you learned from the caregiving, research and writing experience?

The most important thing I learned from the caring experience is that life is full of distractions from what is really important in life.  In reality, the only reason people exist is for “LOVE.”  Everything else is really secondary.

As you reflect on this experience what recommendations would you give others?

To the potential patient or afflicted loved one: Get or recommend a diagnosis as soon as you see a change in behavior so the disease can be managed.

To potential caregivers: Stress is a silent killer, often people facing extreme stress are not aware of the damage to their own physiological system until they themselves become ill. 

Page Last Updated: 05/20/2014