As someone who puts a physical, material understanding of my disease at the top of my conceptual hierarchy, I take the descriptive definition of brain disease very seriously. It is precisely the focus on physical, material investigations of the human brain that has enabled the remarkable knowledge base currently being assembled faster than even experts in the neurological field can absorb it. As evidence I present the July/August edition of the MIT Technology Review—one of the science magazines I read during visits to the bathroom—the entire issue of which is dedicated to “new technologies that look inside the mind [and] will make it possible to change what we think, feel, and remember.” The issue is titled “Hacking the Soul.”
Rather than the biggest fear Behuniak ascribes to people with dementia—to be “dehumanized through social construction as the ‘living dead’”—my biggest fear is that dementia will be eating a large enough portion of my already non-normal-appearing and -functioning neurons, glial cells, blood vessels, and other brain constituents that it won’t be possible for me to opt out of a zombie existence by myself and on my own terms, a fear that will probably cause me to err on the side of prematurity as I plan for my eventual suicide.
Dementia Field Notes
11-28-2011
We went to the gym and I walked 3-something miles on the track with Susan. I forgot that my green exercise shoes hurt me and accidentally put them on. I got bad bunion blisters from when I ran a few laps.
While walking and talking with Susan, I was making a point about shrinking and growing friendships and several times forgot what point I was trying to make during a monologue. Fortunately, when I write I can go back and retrace my logic and eventually get together an argument. I find myself increasingly at a loss to participate in spoken conversations.
One of the first things Peter and I investigated after my dementia diagnosis was long-term care. We knew that it was very expensive, and we were willing to give up some of our retirement dreams, such as regular trips to South Africa while I could still travel, to make it possible. However, it did not take long to discover that once a person has had any kind of memory tests, you can no longer qualify for long-term-care insurance. Not even under Obamacare. Long-term-care insurance falls under the laws that regulate, for example, fire, earthquake, or car insurance rather than medical insurance. In other words, you can legally be refused for “pre-existing conditions” such as living in a house made exclusively out of wood or one in a seismic zone, having a bad driving record, or having had memory difficulties. Up to a point, extraordinary amounts of money can buy this kind of insurance, except in the case of long-term care. Once you’ve had any memory-related issues, even queries to your doctor that did not result in a follow-up but made it into your doctor’s notes, you cannot buy long-term care at any price. Fortunately Peter qualified for such care and we immediately bought a policy. Since it was a certainty that I was not going to be able to take care of him should he become debilitated, his having long-term insurance has given me much peace of mind.
During July 2014, we discovered that my memory tests have disqualified me from another insurance possibility we had been pursuing, a policy known as “hospital indemnity” that pays out to help cover medical costs requiring hospitalization or a time in a rehabilitation facility.
Given these realities, Peter and I now know that we will have to deal with my mental regression through Medicare, supplemented by whatever of our own retirement savings we will be able to shave off as well as the moral support of our children, their families, and the rest of our village.
Dementia Field Notes
12-10-2011
We are on the plane to New York for Peter’s office Christmas party. Since he is a consultant working from home, it did not at all occur to him that Constratus would have a Christmas party. However, his boss called a few days ago to say that he was going to fly both Peter and me to NYC and put us up in the downtown Marriott for the whole weekend so that we could attend the party on Sunday. The party is three hours out of the city, so Mr. Nice arranged a limousine ride for us too.
As we were settling in on the plane earlier, I closed one of the seatbelt-like clips on my gray travel bag without incident. When I got to the second one, though, instead of picking up the lower part of the clip I gripped the zipper tag and tried to stick it into the top half of the clip. Peter was watching and from his concerned expression I could see that he, too, had a moment of realization that some of my dementia issues are progressing faster than we (I) thought they would.
When we were in Chicago in October, I asked Marissa if I could borrow her book Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying. I have been reading it for future reference, but I just realized that I had better seriously figure out the end plan sooner rather than later, while a considerable part of my brain still works. Not that I plan a speedy exit, but just to have all the necessary discussions with Peter and the children and draw up a guide for Peter and the kids when the right time comes. In the end it will be their decision whether to assist me in my suicide (only in ways that are legal) or warehouse my emptied-out-head-attached-to-my-life-clinging-body until my strong heart stops.
In August 2014, our family celebrated thirty years of living in our adopted country. The American Saunderses have grown to nine people: Newton’s wife, Cheryl, has now been part of our family for going on fifteen years, and Marissa’s husband, Adam, for five. Newton and Cheryl’s two children, Kanye and Aliya, are seven and four, respectively—the same ages Marissa and Newton were when we emigrated. Marissa and Adam have eighteen-month-old Dante. Once Cheryl and Adam had gotten over the shock of our family’s no-topic-barred habits around each other, they have been giving us a taste of our own medicine.
None of the adults in our family regards themselves as religious, and the grandkids will decide for themselves as they grow older. Among the six adults, our ethical frameworks and other life principles are similar in broad strokes. Both our children and their spouses are as open to their children’s hows and whys as Peter and I were when our children were young, except that they seem to have less angst than we had. (We were, after all, blazing a trail out of our own upbringings of “children are seen and not heard.”) As an extended family, then, we had done much of the prep that should ideally precede the open discussion of my dementia.
Though the questions we launched into after my prognosis were personal and focused on me, the conceptual ground involved was already familiar to us, since we had had similar conversations when Cheryl’s grandfather was fitted with a feeding tube in his nineties and lived miserably for three more years. So, again, we asked: What is a quality of life or degree of incapacitation each of us would find acceptable? How would we like to spend the last year or month of our lives? What if one of us is no longer capable of rational decision making and is miserable all the time while her body is still in relatively good working order? What quality of long-term care is available for a dementia sufferer of my and Peter’s financial means through Medicare and private funds? How do we feel about last-ditch life-extending efforts, and what would their financial and psychic consequences be for each of our three family units? Under what conditions would each of us commit suicide or seek an assisted death? How would each of us feel or react if one of the others wanted to end their lives before their bodies gave in?
While Peter and I have for many years declared a theoretical position that favors the compassionate ending of a life versus years of misery, we now tackled the concept as a practical reality. Our children hold the same theoretical positions and now declared their practical support to put a suicide plan in place for me. And so started our investigation into the practicalities and legalities of suicide and assisted suicide. Peter and I were of course adamant about not asking our children to participate in actions that would expose them to investigation or prosecution.
In the months—now years—that followed, I surveyed the right-to-die landscape while the rest of my family kept
their ears and eyes open and sent me links, articles, or anecdotes as they happened upon them. My research revealed that (1) whatever scant legal or at least non-prosecutable opportunities exist for citizens in our own country to die with dignity do not extend to someone with a terminal mental disease, since the five right-to-die states—Oregon, Washington, Vermont, Montana, and New Mexico—all require two doctors’ declarations that the person seeking death would likely die within six months and is of sound mind. Since dementia patients are by definition no longer of sound mind by the time their disease will have driven them insane, American end-of-life laws in their present form will not be of any benefit to our family; (2) the legal landscape is rapidly changing. Even where the laws remain unaltered, popular sympathy for families who resort to assisted death has made prosecution very unlikely—no one has been convicted or had to serve a prison term for assisting in a suicide since 1998, not even Dr. Kevorkian. He was acquitted of assisted suicide three times in jury trials.
The absence of overtly “technological” or “medical” means in most assisted deaths seems to be the key to why so few family members who have assisted a relative in dying by pulverizing lethal drugs and making a cocktail out of them have been successfully prosecuted, or even prosecuted at all. The last case prosecuted that I could find was that of Barbara Mancini, a Philadelphia nurse who did no more than hand her still-rational, terminally ill, ninety-three-year-old father a nearly full bottle of morphine. He drank it while she was no longer in the room. He was “saved from himself” by a hospice nurse who called 911. Four days later he died at the hospital.
Even though Mancini was eventually acquitted, a year-long investigation and trial had forced her to take “unpaid leave from her nursing job” and she incurred “more than $100,000 in legal fees.” Her husband, Joe Mancini, “had taken on extra paramedic shifts to help supplement the family’s income.” Of course, the last thing a person asking relatives to assist her in dying wants is to expose the people they love most in the world to such horrible consequences.
In October 2014, Brittany Maynard, a twenty-nine-year-old woman who had been diagnosed with terminal brain cancer and decided to end her life through physician-assisted death (PAD), significantly advanced public understanding and acceptance of dying people to choose the time and manner of their own death. “Mature and savvy beyond her years,” Maynard contacted Compassion and Choices, a national advocacy group for legalizing end-of-life choices, to offer her story in their support. She had by then teamed up with a filmmaker and gone on camera to describe her disease and explain her family’s choice to move to Oregon, where PAD was legal, because her home state of California did not offer her the possibility of a self-determined death.
Once Compassion and Choices had released Maynard’s video statement, her story generated international attention. Young, attractive, eloquent, and supported by a loving family, she succeeded in making many people see PAD not as an outré possibility for a special class of hard-hearted families, but as something they might choose themselves. Her grace and dignity, together with the bravery of her mother and husband, who endorsed her decision even as their hearts were breaking, drew an unprecedented flood of empathy and support that persisted after her death on November 1, 2014, and resulted in the passing of a right-to-die law in California less than a year later. According to the leading journal of health policy thought and research, Health Affairs, her case might result in additional states considering right-to-die legislation: “Predictions that, by the end of the year, 26 states will be seriously considering PAD legislation do not seem outlandish.”
In the context of dementia, do-it-yourself death options through organizations such as Compassion and Choices and the Death with Dignity National Center are not very encouraging. Given that, even in states where PAD is legal, one has to execute all acts relating to your death by yourself, most dementia sufferers will likely not be able to follow through without help from a family member once they are in the advanced stages of the disease. If I already have difficulty setting out my weekly medications in a compartmentalized dispenser and taking the correct day’s pills, how will I manage ten, fifteen years from now to obtain, pulverize, and mix the lethal drugs for my final sundowner without substantial help from my family? Since I now already have to ask Peter to always check if I have combed my hair before we go out the door, how will I be able to set up a tank of helium and place the tube inside the plastic bag I am supposed to fix in a leak-proof manner around my head? Although I really do not want to have an undead existence, I value my family members’ legal indemnity more than my wish for self-determination, even though they themselves at this time feel that, from an ethical and practical perspective, they would want to help me die. For me to realize my preference for a physician-assisted suicide, then, I investigated yet another option: traveling to Europe to obtain a legal death there.
There are indeed ways for foreigners to seek a dignified death in certain European countries. While the last thing a person with advanced dementia needs is an overseas trip, I would want to go through with it if that were the way to spare myself from zombiehood and my family years of taking care of a pale shade of who I used to be. Should the possibility arise to obtain an assisted death closer to home, we would all very much prefer that. However, US states where assisted death is legal have made it almost impossible for “outsiders” to get an assisted death, though internet rumors suggest there might be ways around it. We have set no hopes on Utah making assisted death legal in any of our lifetimes, including those of our grandchildren. Unless there is a change in the zeitgeist that brings assisted death closer to our “pretty, great state,” Peter and our children have declared themselves game to undertake “the death trip” to Europe with me.
Dividuality? My family defines it.
Dementia Field Notes
3-3-2012
This morning I accidentally took my evening medication—the morning and evening pills are in two different, clearly marked dispensers.
I’m now sitting in the Columbus Community Center’s library. I brought [the daughter of one of our neighbors] to sign up for an art activity to be held in the summer. The person teaching it is a professor at the U whose art we had used on a Women’s Week poster many years ago—she depicts fabulous women of color in superwoman outfits and poses. Since the project is for kids older than the girl, I came to ask the artist to make an exception. She is in.
After finishing this entry, I am going to read Final Exit. I wrapped it in Billy Collins’s Nine Horses cover, because in this setting I do not want to advertise my suicide. If it were not for the kids around, I would of course have flaunted it in public, since death with dignity is an issue whose time has come.
Peter and I put our end-of-life-plans, including the death trip, on paper with a lawyer’s help. After we did, I learned about a method of suicide that seems more feasible to our family than what we had already described in our legal documents. The beauty is that its implementation does not require any legal dancing around. The method is voluntarily stopping eating and drinking, dubbed VSED by the medical community.
Cheryl was the one who sent me an article about it, a piece by Nell Lake, a reporter who focuses on the care of people at the end of their lives. The piece, “Aid-in-Dying Loophole: Advocates Want You to Know You Can Stop Eating and Drinking,” posted on the website for WBUR, the Boston NPR station, tells the story of a daughter helping her mother with advanced dementia to stop eating and drinking. It comforts me to know that someone in whose shoes I am walking, albeit some distance behind, was able to muster the discipline to stick to a plan that requires the mental stamina to overcome the instant gratification of food and drink.
Jackie Wilton had lived with dementia for several years before she sought a diagnosis and another “few years” afterward. In the spring of 2012, when Jackie was eighty-four years old, she first explicitly asked her daughter Kathleen Klein to help her die. Fiercely independent all her life, Jackie was deeply disturbed
by having to rely on Kathleen for just about every daily activity. Her request did not come out of the blue. After her diagnosis Jackie had frequently spoken of dying on her own terms before she became severely incapacitated. Though Kathleen and her sister and brother had known about their mother’s intention, they had never discussed a particular mode of suicide. Accordingly, when Jackie first asked Kathleen for help, the latter had no idea how to go about assisting her mother to die or even whether she was willing to risk the threat of prosecution. Not long after that first conversation, though, Kathleen heard a radio interview about “voluntary stopping of eating or drinking,” or VSED. It was “the only legal form of assisted suicide” and was increasingly being advocated by death-with-dignity advocates. Besides being legal, VSED is a naturally occuring symptom of the death process in people dying over a long period, and accordingly something with which medical professionals and other caretakers of the dying are familiar.
Given that suicide is not a crime in the United States and that VSED is frequently used by mentally competent terminally ill patients to hasten their death, it sounded like a viable option. Kathleen discovered that Medicare would provide hospice support as soon as Jackie had stopped eating and drinking long enough to be in pain, unable to get out of bed, or have lost 10 percent of her body weight. After she met any one of these criteria, a doctor would be able to declare that she would likely die within six months. Hospice would then immediately kick in.
Jackie agreed to stop eating and drinking. Kathleen describes her mother’s dying on a blog post written after her death.
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