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On Easter Sunday 2005, after a heroic battle that was both too short and too long, I lost, Sharon, my wife of 25 years to cancer.
It began one afternoon in August of 2004 when, in a heartbeat, life as we knew it changed. Her cancer had been invisibly developing for some time but on that day it made itself known when it ruptured through her uterine wall. She went from no symptoms whatsoever to being semi-bedridden in 2 hours. She had periods of mobility, even semi-normalcy, but they were all too brief. In the race to save her life she was in and out of the hospital many times, enduring several major surgeries, dealing with infections and receiving uncounted blood transfusions. A number of chemo regimens were attempted, none were effective. She suffered great pain and the medications left her groggy and disoriented.
Over a very brief period, she went from an active loving partner to a terribly ill patient who could barely hold hands or stay awake to talk. Our most intimate times were when I would gently rub her arms and legs so that she could sleep. Her temperature could shoot from 99 to 104 in less than 15 minutes. Frequent medications were required to deal with the pain, the effects of the cancer, infections, the side effects of the chemo process, dehydration, or simply to counteract the effect of other drugs.
The intensity, the chaos, and the financial impact of the caregiving process were indescribable. I quit working so that I could take care of her; I was her fulltime caregiver, nurse, drug and treatment scheduler/administrator, and taxi driver. Of course there were other roles: father/(pseudo)mother/taxi driver and friend for our 15 year old daughter, communication center for our widely dispersed families, housekeeper, and a dozen other roles, some hers, some mine, and some entirely new. It was often more than a full time job. This was unquestionably the most chaotic, challenging, and yet the most rewarding period of my life.
In June of 2005, three months after my wife’s death, I was diagnosed with prostate cancer. In mid August I underwent a Robotic Prostatectomy using the da Vinci System, a blessed technological wonder that dramatically reduced the recovery time from months to weeks. I was extremely fortunate to have discovered the cancer early and aided by great doctors and remarkable technology the surgery was successful in removing the cancer completely. My daughter was my primary caregiver as I recovered.
Looking back, I realize that I exhausted myself reinventing on-the-fly what others already knew; a tragic waste of both time and energy. Millions have walked the path I walked; millions more are walking it today. Now, as then there is no way to benefit from what others have experienced. No network to connect with their fellow travelers, no way to leverage their knowledge, their successes, failures, or secrets of survival. While knowing their “tricks-of-the-caregiver-trade” would not have altered the ultimate outcome in Sharon's case, it would have made the journey much easier.
While I searched the Internet endlessly for answers or information relating to her condition, to understand the drug interactions, and to try to comprehend the pathology and lab reports, at that time, feeling overwhelmed by the myriad of caregiver tasks, it never once occurred to me to turn to the Internet for help as a caregiver. Throughout the numerous doctor visits, hospital stays, and treatment briefings, no one ever suggested that I, as a caregiver, could or should seek help. Even if I had thought of it or someone had suggested it, I know now that, it is unlikely that I could have found any significant assistance that could mesh with my hectic schedule.
My story is not unique or particularly novel. It is in fact tragically common. It is at the heart of what I have come to see as the caregiver crisis in America. Every day we hear about efforts and programs to address the high and rising cost of health care, but I know of no one seriously addressing the less visible, but equally high and rising cost of family caregiving.
What I now understand is that be it a spouse caring for a partner, a parent for an ill child, or a member of the “sandwich” generation caring for both children and aging parents, upon the shoulders of unpaid, untrained, and unsupported caregivers rests the day and night care of millions of loved ones dealing with ongoing health issues.
Our nation has the technical and fiscal resources to fix this problem. We also have a moral obligation to care for those who are caring for others. We can and we must do better. It is in that vein that the Foundation For Caregiver was established, with a mission to care for those who care for others.
I thank you personally for taking the time to understand the challenges facing Family Caregivers, and I ask for your generous support; together we can make a difference by caring for those who care for others.
Timothy J. Griswold, Executive Director and Founder