I am constantly mystified by what John ends up remembering… I just don’t understand why he’s able to hang on to information like that, while so many other more important memories evaporate. Then again, I suppose so much of what stays with us is often insignificant. The memories we take to the ends of our lives have no real rhyme or reason, especially when you think of the endless things that you do over the course of a day, a week, a month, a year, a lifetime. All the cups of coffee, hand-washings, changes of clothes, lunches, goings to the bathroom, headaches, naps, walks to school, trips to the grocery store, conversations about the weather—all the things so unimportant they should be immediately forgotten. Yet they aren’t. I often think of the Chinese red bathrobe I had when I was twenty-seven years old; the sound of our first cat Charlie’s feet on the linoleum of our old house; the hot rarefied air around aluminum pot the moment before the kernels of popcorn burst open. I think of these things as often as I think about getting married or giving birth or the end of the Second World War. What is truly amazing is that before you know it, sixty years go by and you can remember maybe eight or nine important events, along with a thousand meaningless ones. How can that be?You want to think there’s a pattern to it all because it makes you feel better, gives you some sense of a reason why we’re here, but there really isn’t any. People look for God in these patterns, these reasons, but only because they don’t know where else to look.Things happen to us: some of it important, most of it not, and a little of it stays with us till the end. What stays after that? I’ll be damned if I know.(pp.174-175)
Death. I wish the word could be removed from the vocabulary and from the dictionary. It simply does not exist, except in the human mind that was taught that it does exist. People think they are a body and they come to believe that when the body dies, everything they are will die too. It’s not true. The soul lives on. The soul of consciousness exists not only in the body but outside of the body too. We are all souls that cannot be contained or limited by time or space or the physical body. For souls there is no death.
I knew then why I had to suffer. The older we get, the more reasons God gives us to seek His comfort. In the end, He sends us just enough pain and suffering so that we will want to leave. If everything were perfect, we would never choose to go. He wants us to seek an end to our suffering because He wants us to want to come Home.
Of course, it’s now obvious why he was so angry that day. People don’t move into hospice to live but to die. And that half an egg sandwich I ended up making him–that sandwich was the last meal he ate in our Haight-Ashbury apartment, our one true home.
I entered the picture in the eleventh hour as a guide to the exit of his life. I navigated as best I could the role of end-of-life shepherd—a journey that I had never taken before. I have to forgive myself for what I did not know. And I have to forgive him for the times that he felt unequipped to deal with the unknown.
In the kitchen, her family nibbled Helen’s lemon squares. Melanie urged brownies on the nurses. “Take these,” she told Lorraine. “We can’t eat them all, but Helen won’t stop baking.”“Sweetheart,” Lorraine said, “everybody mourns in her own way.”Helen mourned her sister deeply. She arrived each day with shopping bags. Her cake was tender with sliced apples, but her almond cookies crumbled at the touch. Her pecan bars were awful, sticky-sweet and hard enough to break your teeth. They remained untouched in the dining room, because Helen never threw good food away.
The last slide is Main Street at night, with the castle lit silver blue in the background. In the sky, fireworks are going off, cresting, cracking open the darkness, shooting long tendrils of colored light down to the buildings, way longer than I’ve ever seen for fireworks… I linger on this slide. I study that blue castle and those fireworks and realize that this is the image I’ve had in my head of Disneyland for all these years. Just like the beginning of the Wonderful World of Disney TV show. Maybe that’s why I wanted to head here this time. I know it’s ridiculous, but part of me wants to think that the world after this one could look like that.Like I said before, I stopped having notions about religion and heaven long ago—angels and harps and clouds and all that malarkey. Yet some silly, childish side of me still wants to believe in something like this. A gleaming world of energy and light, where nothing is quite the same color as it is on earth—everything bluer, greener, redder. Or maybe we just become the colors, that light spilling from the sky over the castle. Perhaps it would be somewhere we’ve already been, the place we were before we were born, so dying is simply a return. I guess is that were true then somehow we’d remember it. Maybe that’s what I’m doing with this whole trip—looking for somewhere that I remember, deep in some crevice of my soul. Who knows? Maybe Disneyland is heaven. Isn’t that the damnedest, craziest thing you’ve ever heard? Must be the dope talking.(pp.253-254)
I haven’t been out driving at this time of night in many years, much less in an unfamiliar area. These are the things that scare you as you get older. You understand night all too well, all its attendant meanings. You try to avoid it, work around it, keep it from entering your house. Your weary, ornery body tells you to stay up late, sleep less, keep the lights on, don’t go into the bedroom—if you have to sleep, sleep in your chair, at the table. Everything is about avoiding the night. Because of that, I suppose that I should be scared out here in the dark, but I am finally past that, I think.(p.204)
I am not knocking advances that provide a healthier life and alleviate suffering or unnecessary premature death. I am advocating inclusion of education on end-of-life matters and the promotion of understanding, conversation, and planning.
When I reflect on the stories of death supported by hospice care and contrast it with our story depicting an absence of support, I find myself dealing with envy and anger. I have channeled those emotions into this book with the hope that hearing our story might give someone else a chance to create a better ending to the life of a loved one.
What would I have wanted to say if I had had the opportunity to see him one more time? I would like to think that I would have kept it simple and said, “I love you,” then just held his hand in silence, letting that thought linger in the space of the time we had left together.
Last Comforts” was born when one nagging question kept arising early in my journey as a hospice volunteer. Why were people coming into hospice care so late in the course of their illness? That question led to many others that rippled out beyond hospice care. Are there better alternatives to conventional skilled nursing home operations? How are physicians and nurses educated about advanced illness and end-of-life care? What are more effective ways of providing dementia care? What are the unique challenges of minority and LGBT people? What is the role of popular media in our death-denying culture? What has been the impact of public policy decisions about palliative and hospice care? The book is part memoir of lessons learned throughout my experiences with patients and families as a hospice volunteer; part spotlight on the remarkable pathfinders and innovative programs in palliative and late-life care; and part call to action. I encourage readers – particularly my fellow baby boomers -- not only to make their wishes and goals clear to friends and family, but also to become advocates for better care in the broader community.
Ted," he said, "when all this started, I asked myself, 'Am I going to withdraw from the world, like most people do, or am I going to live?" I decided I'm going to live-or at least try to live-the way I want, with dignity, with courage, with humor, with composure.
This is exactly the sort of thing that makes traveling wonderful for me, the reason I defied everyone. The two of us together like we have always been, not saying anything, not doing anything special, just on vacation. I know nothing lasts, but even when you know that things are just about over, sometimes you can run back and take a little bit more and no one will notice.
I thought that nothing enormously bad or good had happened to me during my life. All the normal things had occurred. I had lived a completely unremarkable life. I wanted only my home, and the love and safety of those around me, nothing else. I knew there was no particular reason why I was put on this earth, but here I was and I was glad to be here, awed by the beauty of it. It was a perfect moment. (p.99)