A unique perspective on hospice, autism and gratitude
Someone recently asked me to explain to him what hospice is. He had never been in an experience where someone close to him had received this service. Since my husband had passed less than a year ago, it was hard for me to find the right words to explain to him what our unique hospice experience was like. I looked at videos on YouTube, PowerPoint presentations done by health care experts in the field and hospice organizations’ websites. None of them captured what I wanted to tell him about what it was like to see someone you love go through the final stages of life. None of them felt right because there is no right way to explain what happens during the final few weeks and days of someone's life. It is sacred. It is humbling. It is traumatic. It changed me profoundly and brought me closer to the core of who I wanted to be and how I wanted to live the rest of my life.
When my husband, Dan, was diagnosed in January 2014 with cancer of unknown primary, it had already metastasized to his liver. We knew he had less than two years. Treatments of chemotherapy, radioembolization and experimental drugs at the National Institutes of Health gave him some months where he was able to function and work part-time. I remember being taken aside by the social worker at NIH. She said that it was time for me to decide to stop treatment, because Dan could no longer make that decision. The cancer had impeded his ability to do that. "It is OK to ask questions,” she said, "even the hard ones." I didn't want to give up, even though I was at the end of my ability to be able to take care of him and our 21-year-old son with autism. I said, "Just because I'm exhausted doesn't mean that he has to give up." She replied, "Yes, it does. You have to live and take care of your son."
So begins the story of hospice. A team of caring social workers, nurses, administrators and a pastor came to see us. What really helped me cope was that they each said that it was a privilege to help someone transition to the end of life. They said that some people do regain strength in hospice and go back to treatment, but that it would probably be unlikely in Dan's case. In came the hospital bed, oxygen, wheelchair, portable commode, diapers, pain medicine (I was now giving Dan 17 types of pills throughout the day and night). Our tiny living room was transformed into a triage unit.
Every other day a nurse came to check on us. He or she bathed Dan, checked his vitals and worked with the doctor to adjust medications. I could feel their compassion and they sensed my desperation. I hadn't slept well in two years, our son was transitioning to a new adult program and my health was deteriorating. I hurt my knee, had a cold that eventually turned into pneumonia and couldn't lift Dan to get him to the bathroom. I did not want his pride to be broken, so I let him be as independent as possible. This was more than I could bear, I thought. This was more than I was capable of. I couldn't do it, I thought. But hospice made me see that I could. They sent a massage therapist to help Dan deal with the pain, and then a little therapy dog showed up and we laughed for the first time in months. The pastor prayed with us. The nurse arranged an emergency-room visit so Dan could have the fluid pumped out of his stomach so he could be more comfortable. They helped me learn how to manage the permanent drain. We were surviving hospice. Then he started to bleed internally.
In the final days of his life, Dan asked me to help him die. I didn't know what to do, so I called his hospice caseworker. She started a morphine drip with a pain pump. It hummed for days. I hated the machine that delivered the meds to keep him calm. Every hour if Dan couldn't press the pump, I or other family members did. The hospice staff held my hand while I sobbed. I felt so comfortable around these strangers who had become my closest allies in the last two weeks. What I appreciated most was their honesty. They didn't know when Dan was going to pass on. They thought it would be soon, but they didn't know for sure. I wanted them to provide me with the answers. To let me know when it would be over. But they couldn't. I learned my greatest lesson from them: Waiting is humbling. While I waited, I gathered my thoughts about who I was in this marriage, how I could have been better and what I had learned from loving this man who loved me so deeply. I became both humble and strong in the face of death. I no longer was myself. I was someone more blessed.