A Note from the
Author:
The ‘almost unbearable heartache’ in the title
of this work does not refer to how I felt about
taking care of a terminally ill parent. Instead,
it relates to how I felt about some of the
circumstances and people that came along with
the responsibility, which I describe in detail
in the book and more generally below*.
I did not plan to write a
book about the end of my mother’s life.
Even though friends, along with colleagues in
Alzheimer’s support groups, encouraged me to
keep notes or write a journal for possible
future reference, I didn’t.
For two reasons: one, was that my mother’s
illness began to progress to the point where she
needed full time care shortly after I returned
from India early in 2008, where I had gone in
order to finish researching and taking pictures
for a book I was writing on Yogi Amrit Desai and
the founding of Kripalu Yoga. A typical day for
me from that time until my mother’s passing in
the summer of 2009 was to get up as early as I
could and work on The Kripalu Story until she
awakened. The remainder of the day was then
spent managing her care.
I didn’t finish writing The Kripalu Story until
the week before my mother died.
The other reason I didn’t write about the
experience as I was living it is that I felt as
though if I ever wanted to do that – write about
it -- I would not need self-reminders of what
had taken place. The experience of being in a
situation that literally involves living with
the reality of imminent death for someone you
love dearly is not something that fades from
one’s memory.
Then, after my mother passed, and with The
Kripalu Story finished and ready for
publication, I felt a very strong urge to begin
sharing publicly what I had experienced. I
contacted Alzheimer’s Association groups and
Hospice agencies about advocating for them via
public speaking engagements and other community
outreach programs.
They responded favorably, but there were
bureaucratic snafus in the way of hiring me
independently to provide these kinds of
services. And I did not want to put myself back
full-time in an atmosphere of care-giving for
the terminally ill.
As the urge to express myself grew stronger, I
decided first to write a clinical ‘A to Z’
guidebook for Alzheimer’s caregivers based on my
experience. I had, after all, made use of social
programs, financial assistance and support
groups that most people are not aware of.
The problem I had with writing a dry, factual
guidebook is that I felt that most people would
want to know how I found out about these
programs in the first place, on my own. And I
had, in fact, learned about the availability of
assistance programs and social services as a
direct result of another member of my family
trying to undermine the home care I was
providing for my mother. In my case, under these
circumstances, it was vitally urgent for me to
obtain outside help and assistance in order to
allow me to continue caring for my mother in her
own home, as I had promised her I would.
Although my situation with another family member
involved extremes - the calling in of intrusive
social agencies and the filing of a malicious,
time-consuming law suits - what happened to me
is not that different in kind to what happens to
primary caregivers in many families. It is all
too common for them to be misunderstood and then
become isolated, even from the very members of
their own family whom they now need more than
ever to count on for support.
I therefore felt it was important to include
descriptions of these incidents and conflicts in
the book in order to explain my
discovery-process as well as forewarn anyone
taking on this type of seemingly benign
responsibility to the kinds of hostile reactions
they might very well receive in turn.
That in the end I was not able to keep my
promise to my mother is precisely what begets
this book its somber title and which also
instigated a dire aching feeling of brokenness
and despair in me for several months following
her passing
Even though at the time it was deeply painful
for me not to see my mother at home when she
breathed her last breath, I am now buttressed in
the present by knowing that I did do everything
that I could have done in order to try to make
that happen.
[*The actual experience of caring for my mother
at home was never ‘almost unbearable’, nor a
‘heartache’. It was, in fact, an exhilarating
privilege and a bittersweet joy.]
Therefore, in the end, this book is about
validating the principle that says it is always
better to do all that you can do to provide the
best for someone you love, no matter how great
the challenge or uncontrollable the forces are
that can direct the outcome.
Mostly, though, this book is an homage to family
caregivers and the unique rewards they reap
through this experience. Something that only
them, and perhaps now you, can fully understand
and appreciate.