Open the discussion on dying
Taboos shouldn't prevent us from having important conversations about end-of-life issues to spare loved ones the trauma of making difficult decisions alone.
Tony Lopez, the columnist's father, celebrated Christmas at home with his family and dog, Angel. (Steve Lopez / Los Angeles Times / December 9, 2011) |
But first he had to get there. You go down by the high school, my dad told his driver, an aide from the nursing center. The school, which my dad attended 65 years ago, was in precisely the wrong direction. But he told the driver to keep going, directing him past the primary school and toward the San Joaquin River, also in the wrong direction.
The confusion was cleared up with a call to my mother, who was waiting for them in the house that she and my father have lived in for the last half-century. My father hadn't remembered how to get to that house, but he had remembered how to get to the part of town where he had grown up, with five brothers and sisters, all of them now long gone. It was as though his mind had worked an elegant trick, guiding him back to where his life began, and, in a sense, truly taking him home.
In the past year, my dad has found himself in a lot of unexpected places — physically and emotionally — as he nears the end of life. And he's taken the family along with him. It's amazing to me now, looking back, how little I really thought about the end of life, other than its inevitability. I'm not alone.
About 75 million boomers are approaching old age, and it's no wonder they're beginning to have questions about the way we die, even if they're not sure how to raise them. My dad has always been one to start conversations with strangers, and a lot of people who've been reading about his challenges have wanted in on this one.
Over the past year I've had the privilege of meeting and talking to people as they approach the great unmentionable with varying degrees of fear and courage, resistance and surrender. Many more have shared the very personal details of their own journeys at http://www.latimes.com/lifeanddeath, offering advice on the many medical, moral and legal end-of-life quandaries.
And it turns out we have a lot to learn from one another.
I'm thinking back now on my friend Lawrence Tolliver, a barber whose own son died of cancer this year just before my father turned critically ill. I accompanied Tolliver to a mortuary, where he bravely gave his son a proper haircut for his funeral. I'll never forget Tolliver's loving tribute from a church pulpit, celebrating his namesake's life and telling mourners his son's suffering had come to a merciful end.
In Los Feliz, Freddie Ramos, who decided against more chemo to treat his advancing cancer, told me that "living in fear of death is no way to live." And in Santa Barbara, Colleen Kegg lamented the absence of a death with dignity law in California and discussed her plan to starve herself when a terminal neurological disorder advances. "I am a strong believer in the fact that life is about quality, not quantity," she wrote in a statement documenting her end-of-life wishes. In Santa Clarita, as he made house calls, geriatric doctor Gene Dorio told me of his deep respect for his patients' choices — those who want to let go and those who insist on fighting for every breath.
What I've learned along the way is that we have to get past the fears and cultural taboos that prevent us from discussing death with loved ones. We need to make our wishes known in advance healthcare directives, sparing friends and family the psychological trauma of impossibly difficult decisions. We need more information on end-of-life choices and broad reforms of Medicare, which gladly pays for the tools of slow suffering in terminal patients — feeding tubes, hip replacements, etc.— but is stingier about paying for palliative care despite lower costs and higher patient satisfaction.
One of the great tragedies and cruel ironies of American politics is that we stand no chance of hearing workable solutions or honest discussion from candidates in an election year. So a popular demand for policy changes may be the only hope, and I invite you to make yourself heard at The Times' Life and Death page. I'm sure my dad would appreciate your contribution, given his genetic, long-standing lack of faith in the ability of Congress or the White House to lead the way on matters of great importance.
I flew north to see him Monday, and hospice care has gotten off to a rough start. Not so much for him; he's thrilled to be out of hospitals and nursing homes and back in his humble castle. But my mother and sister are the primary caregivers, and the physical and emotional demands are wearing them down. I worry as much now about their health as I do about my father's many life-threatening conditions. The task this week will be figuring out whether to hire backup help when hospice staff isn't there or to instead move him into assisted living, which he strongly opposes.
You see a once-vital man this compromised and your heart aches.
Maybe the last gift you get from someone you love, before they're gone, is a greater appreciation of life. Freddie Ramos put it perfectly. "Living in fear of death is no way to live."
On Monday, my family did what we've always done at this time of year. We had a nice meal, put on some holiday music and played cards. A part of my father was there with us. Another part of him may have been wondering how to get home.
steve.lopez@latimes.com
To read more of Steve Lopez's columns on this subject or to share your stories about the end of life, go to latimes.com/lifeanddeath.
Comments (58)
Add / View comments | Discussion FAQThank you Steve. Much Love & Respect in this time of Need.
Thank you for focusing on this issue. Lately I have become rather morbid and I've started to be concerend about my old age and death, especially since I have no children or close family living nearby. Ironically, reading these stories is having the liberating effect of making me feel actually good that I don't have all these people that I will burden in my old age. It sounds exhausting, both physically and emotionally, for the families and the person who is dying, to be dragging out the death process. I will go on my own terms, free and not worried about who is going to be there crying over me, etc...not trying to hold onto a family member when my body is ready to go. That being said, I want to live as long as I can, and as long as I'm able.
It has been difficult to read the columns about your father, Steve. My family is also dealing with our father's end of life. Dying with dignity is a misnomer in our current world. It is sad to watch my once larger than life father struggle to move his body even just a little bit. He had told his doctors over the past two years he wanted to die at home. Hospice showed up on Friday and already the weight seems lighter. We worry so much about my mother who is his primary caregiver. Just the other day he fell out of bed. my slight mother could not move him. SHe turned up the heat, pulled the comforters from the bed and slept with him on the floor. These are poignant moments in days filled with pain, moaning, hospital beds he hates with a vengeance, in particular the bed rails. This whole process has been simplified in some ways by his VA healthcare. We do have an easier time than many families, but my dad in his more lucid moments tells me this is no way to treat a human being. As I pray each day for my dad, and family I am also keeping your family in my thoughts. We must force this discussion into the daylight to help families who find themselves in this same situation. Thank you for your honesty and openness. With the sadness comes close family moments. I am grateful for his simple laugh, word of thanks and the touch of his hand on my cheek. He, like your father, deserves better.



