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.