Читать книгу This Is Not the Life I Ordered - Deborah Collins Stephens - Страница 28

“A strong voice inside spoke to me on many sleepless nights. It said that my obligation was to help my husband die with dignity. Gail Sheehy, author of the iconic book Passages, had traveled a similar journey with her husband and she introduced me to hospice and palliative care when she spoke at my conference. I'll always be grateful for her caring advice. I set up a meeting with Mike's doctor and broached the subject of hospice. He agreed and gently told Mike that he needed to get his affairs in order.

“Mike, still determined to fight his illness, struggled to accept his reality. ‘After you have fought so hard for so many years and battled the odds, it is difficult to turn off the fight,’ he said. As primary caregiver, I spent most of my time at home, which now resembled a hospital. I was extremely grateful that I was able to care for Mike, but I quickly learned how lonely and scary caregiving can be.

“I was still working—I had to work, as we had enormous medical bills. We were extremely lucky to have escaped bankruptcy. In fact, over 60 percent of families dealing with a terminal illness go broke and far too many women lose their homes and any sense of security when a spouse dies. The whole process is akin to landing a 747 in the midst of a war zone.

“I quickly learned how to compartmentalize, going to the upstairs bedroom to conduct conference calls for my work while knowing that one floor below, my husband lay in a bed dying. Trying to be ‘normal’ while living in the most abnormal and heart-breaking of circumstances was excruciating. Michealene described perfectly how I felt—like an old thermos bottle encasing shattered glass. The thermos looked perfectly normal on the outside, but when it moved, you could hear the tinkle of the shattered pieces. That was me.

“My friend, Billie, introduced me to Dr. B., a psychiatrist who met with me weekly to help us through Mike's nine-month hospice journey. More coach than psychiatrist, Dr. B. overflowed with life wisdom. He gave me assignments each week, all crafted to help us through difficult moments. One in particular made an amazing difference. He asked me what I thought of when I heard circus music. I responded: Happy, cheerful, smiling kids, lighthearted. He instructed me to download as much circus music onto my computer as possible and to start playing it at home. What sounded crazy at the time turned out to be nothing short of remarkable. The music took our minds to a joyful place that made the moments easier to handle. My husband got the biggest smile on his face whenever he heard it. Today, that is the face I remember—that big smile. If you're lucky, you get to engage with a remarkable human being like Dr. B. His lessons will accompany me forever.”