Editor's Note: Meet Sandy Morris, an experienced spousal caregiver and professional in the elder care industry. Through an ongoing series of blog posts, Sandy will share insights on her caregving journey and valuable information on complicated topics such as Veterans benefits and paying for care. In this first installment, Sandy introduces herself and shares her story of caring for her late husband for over a decade.
August 13, 1998: The date my late husband, Michael, was diagnosed with stage 4 esophageal cancer. Many of you know the shock of receiving a terminal diagnosis. I likened it to being locked in a dark, unfamiliar room while groping the walls for a light switch.
Michael’s prognosis was a 10% chance of living 18 months post-diagnosis. Not very good odds, but I glommed onto the fact that somebody did survive, and it might as well be my husband. After all, he was only 44 years old at that time and in otherwise excellent health. I figured that conviction would serve me, give me a way to cope, unless or until life informed me otherwise.
I also thought he would either live or die. I had no idea of the grey purgatory between those two points, but I was to learn of this sad no man’s land in the years to come. Prior to Michael’s diagnosis, I thought people who were cured of cancer returned to the good health they enjoyed before. Now I know nobody survives without throwing something overboard.
The first three years post-diagnosis were horrific. Surgeries, hospitalizations, infections, complications, one thing right after the other. We even faced surprise appendicitis and an appendectomy! If I had to calculate Michael’s chances of surviving all the extreme challenges he faced, he would have had an easier time getting through the Biblical eye of a needle.
He was left with disabling morbidity from his radiation treatment, which affected his heart, lungs and spine. He also suffered the usual chemo-related morbidity, but this mostly seemed like small potatoes compared to congestive heart failure, restrictive lung disease, pulmonary hypertension and destroyed discs in the thoracic region of his spine. He also developed a whopper of an anxiety disorder.
Miraculously, Michael did survive and he stayed out of the hospital for the next nine years.
He even managed to enjoy his life. Then he went through an extreme health crisis in the fall of 2010 that began with aspiration pneumonia. He struggled to survive for the next six months, then finally stabilized, but in a much diminished state.
For the final three years of Michael’s life, I became a full-time, stay-at-home caregiver. As his health continued to decline, Michael opted to go into hospice. He died six weeks later, on August 18, 2013, on his terms, at home and at peace.
Until my late husband’s health crisis in 2010, I worked a full-time corporate job as a department manager. I had good insurance during this time, but still found it very difficult to meet Michael’s medical expenses. As you may know, long-term chronic illness is not a wealth builder. Once I became a full-time caregiver, earning a living became much more challenging. I cobbled together a variety of small income streams, and we somehow met the challenge.
I learned a lot of lessons the hard way. I sought answers and resources and many times had a difficult time finding either. But ultimately, I survived. In spite of the grim statistics for caregiver mortality and morbidity, I’m in good health and have retained an optimistic and joyful attitude toward life. And I’m excited by the possibility that something I share in this blog may make a real difference in the lives of other caregivers and their loved ones. I guess once a caregiver, always a caregiver!