This is a sobering post. I write it during the holiday season not to be a “downer,” but rather to share a health care odyssey that my family and I are taking right now. I also write it to identify what I see to be a gaping hole in resources organized and available on the Web -- a gap that I have now attempted to begin to fill in my own small way with my new website
Long-Term Care Sherpa (more on that below, but first the context).
All of us have had our share of family health crises and tragedies. We certainly have had ours. That is part of life. During those times, the most critical thing is for families to work together to first give emotional support to each other, but also to minimize the pain and optimize overall care for the loved one at the center of the crisis. Also permeating all of these major health crises is our overall health care system, the tremendous costs associated with it and these events (which frequently continue into the need for long-term care), and the frequently (too frequently!) resulting catastrophic financial consequences. The overall impact can be a tragic double whammy -- the stricken loved one and family are never the same.
I saw this first-hand in 1985 when
my beloved father, Denes (a man who could do it all), suffered a massive stroke that ultimately required him to have skilled nursing care in an outside “home” (by the way, that scene in “It’s A Wonderful Life” when George Bailey learns about his father’s stroke still gets me every time). Tragically, my father was never the same mentally or physically. And, tragically, his 5-year skilled nursing care devastated the nest egg that he had worked for so hard for the benefit of his wife, my mother, Eva.
Which brings me to my mother, Eva, who has lived bravely and independently since even before my father’s death in 1991. She is now 78. And, up until the end of October, she lived alone in her own condo in Minneapolis (I live in San Diego) and drove her own car. That’s when I received “that” dreaded call from my sister. My mother had fallen ... and had been hospitalized. And, that’s when our most recent family health care crisis and odyssey began.
All of us (I have two siblings, but only one in Minneapolis) immediately went into crisis mode, scrambling to organize our thoughts about what to do and how to do it -- no small feat, given that all three of us have demanding jobs and families. I, of course, immediately turned to the Internet, that great bastion of resources organized and available anytime simply by a stroke of the keyboard. I thought that, since ALL of us have gone through similar life-altering health crises (which is part of the human condition after all), countless sites would be available to me to help me and my family organize our thoughts, approach the myriad issues involved (both care-wise and financial), identify helpful resources, and provide support and community.
Boy was I wrong.
Instead, I found an unorganized patchwork of sites that focused on this or that, but did not give the “big picture.” And, I had looked hard, believe me. It was beyond frustrating. The closest thing I could find was a site called
“A Place for Mom,” which advertises broadly (I hear radio ads all the time), but essentially is nothing more than a glorified long-term care/senior living referral service. To be clear, I am not knocking that site -- it is the best thing I have found out there today. But, it didn’t get me what my family and I needed to approach our health care odyssey and optimize the result (both care-wise and financially) for all of us --
especially my mother.
So, since shockingly nothing was available, my family and I -- just like many of you -- have had to do it ourselves. We collected bits and pieces of information here and there about long-term health care options, about the financial implications of each, about available medical assistance -- all of which, of course, has been 100% dependent upon the amount of diligence we could bring to bear amidst all of our other continuing responsibilities of life. In essence, we collected a valuable (invaluable?) treasure trove of information and real-world “learnings” that we felt could benefit others whom, like us, have been faced with life-altering health crises and tragedies. And, we wanted to share it with others so that they could focus as much time as possible on the stricken loved one’s physical, cognitive and emotional support and well-being -- instead of spending precious hours upon hours digging into a massively frustrating and broken health care system that spends too little time focusing on these long-term care realities that all of us have faced, are facing now, or inevitably will face.
And, from this diligence -- from our blood, sweat and tears (literally) -- I have launched my new website
“Long-Term Care Sherpa” -- which is intended to be a guide to all faced with these issues. To help them organize their own odysseys when they get “that dreaded call.” To identify major issues that deserve focus (some immediately ... with massive adverse consequences if they are not addressed immediately). To collect, consolidate and offer resources. To provide support and a forum for all to tell their own stories -- and to help others in the process.
But,
Long-Term Care Sherpa isn’t only intended to be relevant to long-term solutions and care for aging parents. My goal is for my new site to be a resource for all those families impacted by a health tragedy that may require long-term care. This can be a parent, of course. But, it also can be a brother. A sister. A child.
So, come with me on my journey, if you believe it may help you on your own. My family and I are at the beginning of our latest trek. It is daunting. I hope to make it less so. I hope to be your guide to minimize the pain. To ultimately find the solution that is “right” for you, your family, and most of all, your loved one at the center of it all.
I will be your sherpa ....
