A story recently shared with us here at Alzheimer’s Disease Support showed how much caregivers give back, regardless of the disease being encountered. This is one story.
Mid-November 2005 was supposed to be the start of a joyous season for my family. My wife Heather and I were thrilled at the prospect of celebrating our first Christmas with our daughter Lily, then three months old. Instead, however, it was the start of the most wrenching time of our lives. On November 21, Heather received a horrifying diagnosis: she had malignant pleural mesothelioma. Now my wife would have to battle a rare and deadly form of cancer, and I would be a caregiver.
I was unprepared, to say the least, for my new caregiving duties – duties that began at the moment of the diagnosis. After describing the disease, our doctor provided three options for a treatment location: the local university hospital, the highly-regarded regional hospital, or a hospital in Boston. The Boston hospital was the farthest away, but it was the only one of the three that employed a mesothelioma specialist, a specialist named Dr. David Sugarbaker. As soon as the doctor provided these choices, I looked at Heather, assuming that she’d either express her preference or request additional information. She did neither. Rather, she simply sat still. Judging by her expression, I knew she was in shock. Her eyes seemed to plead for help. Immediately, I turned back to the doctor, and my words just slipped out: “Get us to Boston!” It was the first – and far from the last – decision I’d have to help make as Heather’s caregiver.
From there our lives descended quickly into chaos. Our daily routines, and the comfort they brought, vanished. Before the diagnosis, Heather and I both worked full time. Now I worked part time, and Heather couldn’t work at all. My schedule became nearly unmanageable. In addition to my job and taking care of Lily, we had to travel frequently to and from our doctor’s office, and to and from Boston. What’s more, my fears were sometimes overwhelming. I worried that I’d lose my wife. I worried that, in fighting the disease, we’d lose all our savings, all our possessions. I imagined life as a homeless widower. And what would happen to Lily? More than once, in the grip of terror, I found myself on the kitchen floor, sobbing uncontrollably.
But there was something stronger than those feelings of helplessness: my sense of responsibility as a husband and father. And so I was always composed around Heather, careful not to let my horror show. I knew I had to be strong for her, and so I was.
What also helped, immensely, was the support of family, friends, and even complete strangers. People offered us words of comfort and gifts of monetary relief. Each of these people was a true blessing. Indeed, there’s no way for Heather or me to ever show them our full gratitude. Those people taught me a priceless lesson, too, one that I share often: If ever you’re hurting, and someone offers you assistance, take it. It will ease you of one extra burden. And it will remind you in a vivid way that you’re not alone, and that others care about you.
Of course, even with these kindnesses, caring for a person suffering from a serious illness is excruciating. The bouts of stress are intense. You face, on a daily basis, the fact that there’s no escape, no reprieve. Even so, you must do all you can, utilize every emotional resource you have, to maintain your sanity. Sure, allow yourself the occasional bad day: this is inevitable given the circumstances. But you absolutely should not let fear and anger become your primary emotions; these destructive forces should not rule your life.
Today, miraculously, Heather is cancer-free. She had to undergo surgery, chemotherapy, and radiation treatments for mesothelioma; she had to stare down long and frightening odds. But she did it. And as husband and wife, Heather and I were forced to endure years of uncertainty before we could resume anything close to a “normal” routine. But we did it. What’s more, Heather’s example – plus all the time-management and coping-with-stress skills I acquired during her battle – inspired me to return to college and earn my degree.
The lessons I learned as caregiver will stay with me the rest of my life. I learned that during times of trial, it’s essential that you ignore your pride and ask for help – that asking for help is actually a sign of strength. I learned that a caregiver’s strongest weapon is hope. I learned that when a loved one has a serious illness, you must never stop fighting. If you keep fighting, you learn that you’re able to endure and accomplish more than you ever thought possible. Most of all, I learned that being able to have a partner in life like Heather makes every moment of the fight more than worth it.