In those six weeks, Brian’s short-term memory got a little better but he retreated in other ways. A gregarious man, he didn’t want to see friends, except to fish. He now talked only about the past, his childhood and football. I could not steer him to any other subjects. In the evenings, I said—because I didn’t know any better—that maybe we could talk about our life now, as it’s going on, him and me and his retirement and the kids and the grandchildren and our friends, and he said, Sure, but we didn’t, and the evenings were hours of television.
One spring morning, I’d been weeping because Brian seemed so distant and, in that moment, weeping the harder because, although I could see that he was concerned and truly sorry he had upset me, I could also see that he didn’t really know why I was upset, and reminding him of our long, pointless fight the day before wasn’t helping. We still had the occasional Sunday-morning conversations that we’d always had and cherished: Somebody hurt somebody’s feelings and somebody is owed an apology, which will be forthcoming sooner from me, later from him, but delivered by dinnertime. Brian was not immune to the lure of the I-didn’t-say-it or if-I-said-it-I-didn’t-mean-it approach, but one of the things I loved was his willingness to own up. There’d be a burst of anger, the black cloud would pass, and my husband would dig a little deeper and usually come up with a genuine apology （my favorite: “I’m sorry I was such a knucklehead”）。 The cloud didn’t pass now; the apology was thin or weary or cold.
I could feel him through a glass and I was banging on it, screaming at him: Why is there a glass between us? Where did it come from? Take it down! And Brian looked at me with puzzled, irritated concern and said, in effect, What glass? And, Please, please stop complaining about this thing that isn’t even there.
I called the neurologist and made an appointment. By the time we did get to see a neurologist, the urgent short-term memory-loss problem had receded, Brian was still talking only about the past, and we were left with the glass between us, and problems that were intractable, and multiplying.
Messages Not Received
By late 2016, I knew something was wrong. I began reading the Alzheimer’s information and research websites and the caregiver blogs obsessively for a while, then not at all. I stopped reading them because I could not bear to know what it was that was wrong. Every page of every Alzheimer’s website emphasizes what must be done to deal with the loss of cognitive function （the appointments, the cellphone, the driving, and later the names, the hygiene, the missing chunks of personal history plus a highlights reel of the very distant past）， but many of them focus, especially in the early, post-diagnosis days, on the way in which the person is still there, despite the losses. （Not all doom and gloom, as one says.） And some medical sites do tell you how it is when the person begins to fade away, as the neurons stop functioning, lose connections with other neurons, and die. Neurons connect, communicate, and repair, and that’s what Alzheimer’s destroys, connection within and without, first in the entorhinal cortex and hippocampus （the part of the brain devoted to memory） and then in the cerebral cortex （language, processing, and social behavior）。
Those neurons, the brain’s soldiers, march for years, from the time we’re born, through the byways of the brain, setting actions into motion, rolling away boulders of all kinds, and then, with Alzheimer’s, they’re blocked by trees down at one end of the road, dangling wires at another. Over the years, the brain’s soldiers—this well-trained and reliable army, which has done so much, on so many different terrains, gone high and low, swum, climbed, strolled, and marched to all the different destinations of the mind—begin to falter, long before outsiders can see the troubles. Eventually （five years on for some, three for others, ten for some）， the obstacles cannot be overcome. Messages cannot be received. The soldiers cannot break through to new ground. Retreat is the only possible path and you’d be a fool to try to lure someone out, amid the heavy artillery. Alzheimer’s for me is 1914, and a good day with Brian now is that famous Christmas truce, which was quite short and quite beautiful （German boys caroling to the English, calling out, “Merry Christmas, Englishmen,” as they climbed out of the trenches; tobacco shared, souvenirs exchanged, rations shared, and prisoners swapped） and never repeated. Retreat makes sense, and it is agony for me and, I think, not much of anything now for Brian.
That steady loss, that steady unraveling, is sometimes paused but never stopped. The shape of the self is held together as well as can be, with the use of alternative pathways in the brain （Brian began addressing each of the granddaughters as “darling” or “little girl,” and he referred to his book club only as “those guys”） by the person suffering and with backup from the person helping, until none of it’s enough and the vessel, some beautiful Egyptian jug of Nile clay and jute, begins to soften and drop its walls, but not sharply, only as if the straw is pulled out, stalk by stalk, and then it’s not the jug it was, it can’t hold a thing. It’s a pile of clay and straw in the palm of your own hand.
Dignitas Dignitas in 2020 has served more than three thousand people and has a rival, a competing organization, Pegasos, created by the brother of a doctor who left Dignitas. So now there are two places, in the entire world, where you can go to end your life painlessly if you are not suicidal, psychotic, or advanced in your dementia, and I’m glad of it, although my heart is with Dignitas, who treated us with sensible kindness, as much as possible.
For Dignitas （“Life with dignity, death with dignity”）， the prerequisites for accompanied suicide are: old age （there have been quite a few folks in their nineties, who were not in pain but very, very tired）， terminal illness （your inevitable death could still be ten years away—not acceptable in America; acceptable to the Swiss）， or an “unendurable incapacitating disability” or “unbearable and uncontrollable pain.” Dignitas, founded in 1998 by Ludwig Minelli, a lawyer and the former general secretary for the European Convention on Human Rights, is occasionally accused of malfeasance （SWISS DROP DIGNITAS PROBE OVER URNS IN LAKE, The Seattle Times, 2010; CASHING IN ON DESPAIR? SUICIDE CLINIC DIGNITAS IS A PROFIT-OBSESSED KILLING MACHINE, CLAIMS EX-WORKER, Daily Mail, 2009）， but it has run pretty smoothly for these twenty-two years. Occasionally, Dignitas has had to move facilities, from a flat, where the neighbors objected, to Mr. Minelli’s own home in Maur, where his neighbors also objected, to another apartment in Zurich, quite close to a brothel, which objected for obvious reasons, then to a bowling-ball factory, and now to an industrial park in the suburbs of Zurich. Ludwig Minelli, at eighty-eight, still seems to be running things. （Sandra Martino’s name has popped up a couple of times; she is the chairwoman in Germany, where Dignitas hopes to open an office in the coming year, due to a federal-court ruling that the ban on assisted suicide in Germany is unconstitutional.） Pegasos is quite similar to Dignitas and, in fact, is related. Dr. Erika Preisig worked for Dignitas from 2006 to 2008. She went on in 2011 to co-found Lifecircle, an organization active in supporting policy change around assisted suicide and providing counseling and support.