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