Woody Allen once said “I’m not afraid of death. I just don’t want to be there when it happens.”

Hello world. When I began this blog, I planned to update it more often to share how Peter was doing. I didn’t realize how hard it would be to write honestly about the winding down of his living and the approach of his dying and then to share it with the world. But I only know how to write honestly, so here it is.

He has been relatively stable for the past month or so but often had pain when we left the house. He became uninterested in his phone and computer and started to sleep more and talk less. Although we rented a van that could accommodate him in his wheelchair, travel often led to pain so trips away from the house became less frequent. For the past several weeks the only time he has left the house has been to attend church on Sundays. His friend John Smith (from law school days) came from Michigan to visit Peter this past weekend, and we were able to introduce him to our welcoming and nurturing UCC church. He enjoyed the heavenly music and a thoughtful sermon about why the Old Testament is still relevant to our progressive faith.

Peter is now heavily sedated due to seizures. Prior to his diagnosis in February 2016, he had only had “absent seizures” – a few seconds of being unable to communicate but no physical distress. He was put on anti-seizure medication then and has taken it every day since. After 2 ½ years, we did not expect him to seize, so we were taken by surprise when he had a grand mal seizure on Monday afternoon. We called 911 and he was transported to the hospital but after the seizure ended we decided to come back home rather than have him admitted to undergo scans and tests. After all, we know that pressure on his brain from growing tumor is what caused the seizure. The bad news is that it takes awhile to recover from a serious seizure and the patient is often confused and disoriented for a few hours or even days. The good news is that Peter woke up in the hospital thinking George Bush was president. We aren’t sure if he meant George Herbert Walker or the other one. Although this worried us a little, the family decided not to tell him he was wrong. Considering what was happening in Helsinki that very day, it seemed like a blessing that Peter was still in the 1980’s. We hoped that the seizure was a one-time thing, but hospice offered 24-hour observation so our family could get some sleep. We all had a quiet night. Peter still thought Bush was president and the rest of us wished he was.

Tuesday Peter spent the day at home in bed recovering from the seizure. His eyes were closed most of the day and he appeared to be sleeping deeply without pain or agitation.  Fortunately, he woke up around dinner time to enjoy a Texas BBQ of ribs and baked beans home-cooked by our friend John Miller. Unfortunately, he also remembered who the president is. He soon went back to sleep, and again, was watched over by a hospice nurse overnight so everyone else could sleep.

Wednesday morning I woke up expecting another quiet day of recovery, but he had a second seizure at 7:45 am and a third one around noon when I was giving him his medications. I was unhappy with how the Vitas hospice team was responding and the lack of a plan to manage the seizures and reached out to a friend of a friend of a friend who works at the agency. They say the squeaky wheel gets the grease, and you can bet this wheel knows how to squeak. To make a long story short, by last night, Peter had some new medication and the best nurses available sitting at his side and I had the attention and direct phone numbers of some very important people at Vitas. We started giving him Ativan to prevent another seizure and he went into a deep sleep. We didn’t expect him to wake up at all last night because of the sedative. Our friends John Graham and Clinton Payne came over to provide me with some distraction and French fries. John went back to Peter’s room to whisper hello and literally waved a chicken wing under Peter’s nose. Peter’s eyes opened and after a minute or two, said he would like some ice cream. He ate an entire bowl of pistachio ice cream (with his pills mixed in) and then asked for a double espresso. After a short visit with John and Clinton, he was able to call his mom to wish her a happy birthday and then settled back to sleep until morning (the espresso notwithstanding).

This morning, he woke up to have some breakfast (bacon is a great incentive) and went back into the deep sleep. The most important thing is to keep him comfortable and prevent more seizures, so he is now getting regular doses of Ativan around the clock. As a result, he is in a deep sleep. He can hear us and occasionally opens his eyes and sometimes answers our questions.  He  Pasta is on the menu tonight and I am hopeful that he will enjoy it with us. We won’t discuss politics at all.

I don’t know if he will be able to go to church this Sunday but our wonderful pastors Laurie and Megan visit him every day. Peter has a special bond with each of them. He has a hospice nurse in the room with him at all times, and Macy and Eli are in and out, trying as best they can to live somewhat normal lives during this very abnormal time. Macy is working at a restaurant in Aventura and will resume classes at Miami-Dade College (psych major) next month. Eli started his first job a few weeks ago at Tommy Bahama in Dadeland and will be a freshman at Florida State in just a few weeks. My brother John has lived with us for the past year and a half and has been invaluable in keeping Peter comfortable and keeping me somewhat sane. (Yes, we have a lot of Johns in our life).

A nursing student named David came into our lives right when we needed him. For the past few months he has been coming every morning to help Peter. With his help, Peter was able to have a shower outdoors every day. He is caring and smart and funny and strong and I don’t know what we would have done without him. Forget cherubs with harps in the clouds – David is an angel.

Another angel is arriving in a few days. Our friend Michelle Kightley is coming from England to spend a few weeks with us. She is the best nurse on the planet. Peter and I agree that everything sounds better with a British accent, and we plan to do exactly as she says.

At the beginning of this message I purposefully used the words living and dying. Peter and I have been open and honest with our children and our community since he was initially diagnosed with this incurable illness. When he had exhausted all treatment options in the spring and decided to enter hospice care, we continued to tell the truth to eaand face the horizon together. Peter recently told our pastors that he would be willing to share his experience with others, not because he has acquired any great wisdom, but because we are willing to talk about a subject that few people want to discuss. Pastor Laurie’s sermon last week addressed the question “What Happens When We Die” and there have been two gatherings at church around the issue. Extra seats had to be brought in for both sessions, and the conversation was lively. It is clear that when the door is opened, people are eager to come inside and discuss their questions and concerns about dying. Perhaps I will share more about that in another blog post.

For now, this is where we are. Thank you to everyone who has helped us get this far. Our bench is deep.

 

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