Since September, 2012, I have been writing a series of articles entitled, “A Forever Decision” based on my experience of losing my beloved dog Camilla. In October, I found that my Uncle Steve has terminal cancer. Uncle Steve is my favorite uncle and is one of the most important people in my life. I continued writing about coping with the grief of his impending loss, as well as day to day challenges involved in caring for him. The articles grew into a larger work of art. I hope that my writing will help others who visit the Open to Hope website to grow stronger in the face of difficult situations.

December 18, 2012

I made it through the week. But just barely.

This has been one of the most emotional weeks I can remember.

I somehow gained enough energy to go to New York City and take part in the poetry reading. It was really terrific, and we had a full house. I was able to have lunch with my best friend Nick and catch him up on all the news.

I drove to my Uncle Steve’s on Thursday. I had so many memories of childhood trips to visit him. The cold air and views of the mountains and farmland ignited old feelings of anticipation and happiness.

Yet when I got there, I found him in a hospital bed in the middle of the room. That was a shocking sight. I’m almost more afraid now that he’s home than when he was in the rehabilitation center.

I talked to him and helped Sally with his care a little bit. The television is on all day long, at the highest volume because he’s a little hard of hearing.

On Friday morning, we were watching CNN when the story of the Sandy Hook Elementary School shooting in Newtown, Connecticut broke. For the next ten hours, we watched as every horrific detail was revealed: a shooter in an elementary school, children fleeing, parents running to find their children, SWAT teams and FBI agents swarming the place. It was horrifying. I felt like I was watching coverage of the September 11th attacks in New York City all over again.

The news stories triggered the Post Traumatic Stress Disorder that I experienced by watching the Twin Towers on fire. I was a NYC resident at the time of the attacks and I watched the newscasts live as the second plane slammed into Tower Two. I climbed the roof and watched as Tower One burned like a huge cigarette stabbing into the sky. At that point, Tower Two had already collapsed.

The news of the deaths of 20 children as well as 6 school workers hit me full force. I felt surrounded by death. I felt desperate to hang on to life and relationships and every moment with my loved ones. Yet I had to learn during that day and the two that followed that I had to adjust to Uncle Steve’s sickness and mindset. He didn’t react. He just watched.

He was just hanging on, eating and sleeping and watching TV. He was interested in conserving his energy and preserving the status quo.

I have never looked impending death in the face as he is doing. I don’t know what it feels like. I only know that I still have a lot of life left in me and that for me, I need to talk and share and feel my life. I can’t turn it off.

I felt overwhelmed with the noise and I escaped to Starbucks for the free Wi-Fi so I could Skype with Walter. We talked and I vented. It was horrible. I felt like I was drowning. I wanted to go home. But I had a choice to make – to stay with Uncle Steve as long as I could, or to go home and take care of myself. I decided to go back and see how I felt.

Luckily, when I returned home that evening, Uncle Steve was ready to go to sleep and we turned the TV off.

My brother came the next day from New Jersey, and there was someone else to interact with. I hung on, but once again escaped, taking a trip to a nearby chocolate shop that I really love. I spent way too much on chocolate covered pretzels and other treats, but again, I knew that that was a response to the stress I was feeling. It was ok.

I went to Starbucks again that night, coping with my stress by pouring my heart out to Walter. It was really good to be listened to.

I hung on that night and spent my last half a day with Uncle Steve quietly sitting on the couch and conserving my strength. I stayed until the afternoon so that Sally could go to her friend’s house for an early Christmas party.

I did as much as I could to go and be helpful and cheerful for Uncle Steve, but under the circumstances, it nearly broke my spirit. I came face to face with a new set of choices: how to be available to him, and also to take care of myself emotionally and spiritually. And it was harder than I thought it would be due to this perfect storm of the hospice care at home, the Sandy Hook massacre and the Christmas holidays.

I was so happy to get in my car and come home. I have to confess that I sped all the way home, sometimes reaching speeds of 100 miles an hour on the turnpike. I know that was risky behavior. And it was stupid. But I was stuffed with trauma and horror and dread and had to let it out.

In the past two days, I’ve spoken to Walter and Nick. I’ve remained in the quietness of my home, and reconnected with my dog Isabella.

I had planned on visiting Uncle Steve for a few days every month. But right now, I don’t ever want to go to that house again. I can’t step foot in that living room and look at him lying in that bed.

I may change my mind. But for now, I’ve got to take care of myself and keep myself emotionally hopeful and stable. I can’t possibly do that if I have to make another trip over there.

He is eating well and his mind is sharp. He has a dedicated caregiver and the full support of a hospice agency. He is well taken care of. I have time to decide whether or not I want to visit again.