I wrote about a nurse in the hospital who assumed that we were not husband and wife because we are two different races.  He did not ask questions. Just came in and immediately assumed I was the paid caregiver who was there to sit and watch this gentleman. I was not. I was Saro’s wife of 20 years and the mother of his daughter. 

There was a kind of invisibility that I had  to address and get in front of. I write about that to remind anyone who’s working with the public at the most vulnerable and critical stages of their life to be mindful.  It is incumbent upon people in those spaces to actually be more aware of their implicit bias or assumptions.

I had to say, “Hello. Let me introduce myself. My name is Tembi. This is Saro. I’m his wife. The picture by his bedside is our daughter. Thank you for being here today. Can we talk through what’s going to happen?” Everyone is human in this equation. 

I had the blessing of a grandmother who was very thoughtful about how she wanted things at the end. She prepaid the plot, had the headstone carved. The only thing we had to do was add the date of her death. I also had the blessing of my mother-in-law with whom I developed a very close relationship after my husband passed when I would visit her each summer in Sicily. She had a different approach. She talked about death openly and frequently. Culturally, death, in Sicily, is talked about very openly, particularly with her generation. They were always kind of planning for death. It was just a part of the conversation.

In my own planning, we had a trust. We had sorted through certain logistical and financial aspects of planning when my husband was alive. After he passed, I had a different perspective on what planning looked like. I needed to think about emotional well-being as well as financial stability. With my young daughter, I thought about wanting to put the least amount of stress on a child who’s potentially having to care for and grieve her mother’s illness and death. Make a difficult situation easier, if I can. Now, I revisit my plan every five years or so. The planning is intentional and reflects what matters to me. Starting the conversa​​tion is what I learned in Sicily. End-of-life planning is something you’re doing all the time.

I come to this conversation as simply a wife and a mother who was walking her husband up to the end of life. I needed help. There were resources all around me but nobody pointed me in the right direction. When we got to the end of Saro’s life, we didn’t know how much time he had. At this stage you’re in and out of the hospital a lot. In the last two months of his life, he was in the ER every five days as triage for these big situations. 

What I eventually learned was that was  the perfect scenario for something called palliative care. Our doctors could have said, “Hi, there’s something called palliative care. You aren’t being treated with chemotherapy anymore but you need comfort care.” In general, they should sit with you earlier and say, “What does the family need? How can we assist and help medically so that you aren’t coming to the ER every five days?” 

So we got palliative care and hospice very late, a week before Saro passed. The question should have been asked sooner, “What would you like to do with your time left?” Saro would have loved for someone to have asked him that question. He would’ve been able to say, “I want to go home. I want my daughter to be able to be with me. I would love to pass at home.” My daughter and I could have had more time to integrate what was happening. (See page 12 to learn more about Compassion & Choices’ work in Emergency Departments.) 

Thank you for mentioning Lifted. It’s a passion project of mine. As a caregiver, I was the benefactor of so much generosity and so many people who sought to lift me, lift us, lift our family above what was happening. I hope, with these conversations,  to give a little of that back in the world by talking to other women, particularly those who have met a moment of change, been inspired by something. I hope we all get  to grow and become more capacious as  a result of these conversations. 

I think Saro really, quite frankly, would just laugh at this whole thing. I don’t mean that in a dismissive way. I think he never saw himself as particularly unique or special or deserving of any kind of spotlight in any way. I think some part of him, I would hope, would be touched that I endeavored to write our story down. All the parts of our story … the joy of it, the sort of swell and sweeping nature of how we met in Florence and fell in love and his artistry and his poetry and the ways in which he was just a sexy and 3D human. All of that. We co-created this moment and I couldn’t have done it without him. I couldn’t have written the book without calling upon his love and energy. It felt like an impossible task to try to write it all down. It felt like an impossible task to try to make a TV show about it. So, I would hope that he would feel well … good. It’s good. We’re helping people. That’s good. I think he would be like, “Oh, that’s kind of cool.”