Featured photo: Peter Saunders from our 7th floor apartment.
Given the downer characteristics of some of my recent posts, I decided to go rainbow this time: Peter took the photo shown above from our balcony a few days ago. As we stood looking together at the late-afternoon cityscape, my heart lifted skyward. Both of us were struck with awe while the doubled ancient sign of good-things-to-come slowly faded and blinked out. For some weeks before this heavenly herald underscored it, our lives had, indeed, been trending toward an easier happiness—albeit the earthy version, the kind that, in Jane Kenyon‘s eponymous poem,
Two bubbles found they had rainbows on their curves.
They flickered out saying,
“It was worth being a bubble, just to have held that rainbow thirty seconds.”
Isolation & Connection: a RadioWest film about how my family and I are coping (or not) with my dementia during the COVID isolation
Featured image: Screenshot from the RadioWest film Isolation and Connection. Videographer: Kelsie Moore.
As many of you know, RadioWest has over the years made a series of short films on how my family and I are living with my dementia. (You can see them by selecting “Videos” from the menu at the top.) The most recent one, released this week, is the sixth. It continues my and my family’s story and is also part of a new series, In Isolation, that Kelsie Moore and Doug Fabrizio have brought into being in order to highlight the different experiences of people throughout Utah during the COVID-19 pandemic.
During the recent filming of me and my family, Kelsie and Doug consistently adhered to COVID safety rules, as they did while making the other films in the series. I am very grateful to Kelsie and Doug for including a dementia story in the series, since those of us with clouded brains go downhill faster than anticipated due to the lack of social contact, which anchors us to time and place. The film shows how the isolation has affected both Peter and me negatively, but also celebrates how lucky we are to have each other as well as supportive children and grandchildren whose faithful adherence to COVID restrictions has made it possible for us to safely spend time with them. Thanks so much to our children, grandchildren, and Grammy Sandi for agreeing to be filmed, and for all your love that cannot be expressed visually or in words.
To see the new film about our family and COVID, click here or on the photo below.
Photo: Screen shot from Isolation & Connection, filmed by RadioWest’s Kelsie Moore.
Featured art: Detail from Evening at the Window, Marc Chagall (1950).
This past week I donned my Covid-19 mask and, with Peter as my ever-gracious chauffeur, set out for the Orthopedic Hospital at the University of Utah for treatment of the painful thumb joint on my right hand. At the hand clinic—contrary to my previous physical therapy experiences—I was not given a series of exercises to do at home. Instead, the therapist told me that exercise does not help a arthritis-triggered injury at the root of the thumb and said she was going to make me a protective brace on the spot. We were in a large workshop, the size of, say, a high school chemistry lab. A dozen or so other therapists, each at stations more than 6 ft apart, were molding protective devices for other patients or stepping them through their exercises. Since this is a teaching hospital, students being trained were assisting some of the therapists. The room hummed with the ordinary to-and-fro ribbing and what-are-you-doing-for-Thanksgiving chatter of the kind one often experiences in a work environment. It was quieter than a restaurant, more like a coffee shop.
Sugarhouse Coffee, a short walk from our apartment.
To my embarrassment, I was overcome by emotion, wept quiet tears into my mask. Visiting the clinic was my first experience of stranger togetherness on this scale since Utah’s first lockdown in the middle of March. Being part of a community, even though momentarily, filled me with a sense of well-being. For a few minutes I forgot the isolation I had felt during the long Covid months and the dread of ongoing seclusion until a vaccine is widely obtainable. Surrounded by the murmur of conversation, my emotions lifted as when, pre-Covid, Peter and I visited a bookstore or neighborhood coffee shop, the social highlight of our daily retired life. By the time my therapist velcroed the protector onto my hand, a sense of new possibility pervaded my mind: I left with not only my nifty custom-made light-weight brace, but also an infusion of energy that made tomorrow, next week, the future seem possible, even exciting—a sensation as novel in my current life as the plastic device in which my hand was now encased: “hope?”
Lightweight hand brace
In his memoir, The Anatomy of Hope, Jerome Groopman—an oncologist who for many decades had observed how people prevail in the face of illness and death brought about by cancer—defines hope as “the elevating feeling we experience when we see—in the mind’s eye—a path to a better future.” He then presents a number of cases in which some patients and their families were able to maintain hope for the duration of the person’s illness, even at times when the end result was death. The “elevating feeling” I had experienced at the hand clinic, however, had no staying power: by the next day, my mood had clunked back down into the slough of hopelessness in which I had dwelled for much of the past two or three months of isolation. Groopman provides an explanation for why a feeling of hope often doesn’t last. Hope, he says, has prerequisites: it will only endure when it is “rooted in unalloyed reality.” Hope must acknowledge “the significant obstacles and deep pitfalls along [its] path. True hope has no room for delusion”(xlv).
Woman and the Dead. Olaf Breuning, 2007.
Groopman’s case studies show that patients who managed to maintain hope underwent a change in their brain chemistry powerful enough to have positive physical as well as psychological effects. Acceptance and expectation, “the key elements of hope,” together with the acknowledgement of “the significant obstacles and deep pitfalls along [its] path”… can block pain by “releasing the brain’s endorphins and enkephalins, mimicking the effect of morphine.” In a chapter titled “Exiting a Labyrinth of Pain,” Groopman relates his own experience of overcoming 19 years of “excruciating” and “relentless” pain after failed back surgeries. After his surgeon told him that nothing more could be done because of inflammation and too much scar tissue, he entered a state of hopelessness and shrank his life activities as dictated by his pain. He could barely work: some days he didn’t get through his hospital rounds. He could not play with his children or teach them ball games. By chance he heard of a rheumatologist at a Boston hospital who had developed a method of steadily challenging muscles “until they were ‘reeducated’ to relinquish their memory of past pain” (156). The information filled him with hope, which he visualized as “walking hand-in-hand with my daughter to a pond some two miles from our house to feed ducks and search for frogs.”
Hope, 1866. Tate, London. George Frederic Watts (1817-1904). “Hope sitting on a globe, with bandaged eyes playing on a lyre which has all the strings broken but one out of which poor little tinkle she is trying to get all the music possible, listening with all her might to the little sound—do you like the idea? George Frederic Watts in a letter to his friend Madeline Wyndham, December 1885
Groopman noticed that, as with some of his patients, his initial “elevated feelings” did not last. Nevertheless, though skeptical, he started the treatment. It was only when he had made step-by-step plans with his doctor and started following through (despite terrible pain ) with the support of therapists that hope returned to stay. Hope differs from positive thinking, which is passive. Genuine hope, he concluded, was based on action and knowledge. One needs to learn every detail of your situation and its possible resolutions (and potential failures), and then set up a feedback loop in which knowledge spurs action, action releases mood-lifting brain chemicals, and the chemicals, in turn, kindle hope. Hope, a neurobiological research team recently wrote, is “a necessary motivating force” in reducing physical pain and “overcom[ing] inner psychological conflicts.” Although Groopman did not regain all of the mobility he’d had before his back injury—he was twenty years older after all!—he became functional enough to move “comfortably” through the day. He felt “reborn” (160).
Gustav Klimt, Hope II. (1907-8). A heavily pregnant woman wearing a long dress or cloak decorated with geometric shapes. With eyes closed as in prayer, she bows her head towards her bare breasts and burgeoning abdomen. An incongruous human skull appears attached to the front of her clothing. At the foot of the painting, three woman also bow their heads, praying or perhaps mourning. All of the women depicted hope for new life—but their hope is tempered with the knowledge that, in the early 20th century, labor is dangerous.
Hope had been lacking in my life for the past two or three months. When the novelty of Utah’s first Covid lock-down (in March 2020) wore off, I felt (and Peter noticed) that the social isolation intensified my dementia’s attack on my memory: Doña Quixote, aka My Dementia, moved deeper into my life with a vengeance. I experienced a basic truth of dementia studies: daily ordinary human contact is crucial to the wellbeing of people with Alzheimer’s, microvascular disease, Parkinson’s, or one of the many other brain diseases marked by a loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to such an extent that it interferes with a person’s daily life and activities. Social contact enhances our ability to “switch between aimless daydreaming and a focused state of mind”; reduces “disorganized thinking”; strengthens our sense of time (enabling us to distinguish the past from the present) and place (grounds us in our environment); and generates a sense of community that reduces loneliness and isolation.
Hope. Edward Ruscha (1996). “There is a tension between the appearance of the work and the meanings and associations of the title. Black and blue paint obliterates the word ‘hope’ like dirt or a blood splatter. Its large, horizontal format is reminiscent of advertising billboards.”
Whether someone has dementia or not, a lack of social contact “is strongly associated with an increased risk of depression, anxiety, stress, insomnia, and mood disorders.” “Covid brain,” therefore, does not afflict only people with dementia. However, the toll on those with dementia and the people who love them is inordinate: a study in England and Wales shows that “dementia is now the main underlying condition for Covid-19 deaths, accounting for one in five of total deaths.” The US keeps “no nationwide data” on infection rates and deaths among people with dementia, but according to data from The New York Times, the infection rates and death in our care homes is not substantially different from that in Britain. Everywhere, caring for Covid patients with dementia is harrowing: not understanding what is happening, they tear out their breathing tubes and IVs and are therefore physically restrained, which causes unbearable fear and anxiety. Beyond Covid-19, people have been dying from dementia at almost twice the usual rate: an article in Al Jezeera proposes that these deaths result from “loneliness.”
“Dying of Loneliness.”Jawahir Al-Naim, Al Jazeera.
Even though I am lucky enough to have Peter as a constant companion, the Covid isolation accelerated my brain’s downsizing. My conversation has become less fluent, my writing painfully slow. When I gather the courage to sit at my computer, I feel bereft of words. I started this post on October 17th, but on some days was not able to complete even one sentence. (As is my habit, I saved (in a Word document) my unsuccessful wrestling with ideas, other stretches of wanna-be prose, and bits of information that would not come together. By now my discards and leftovers fill over 30 pages.) My most notable downslide, however, is that my memory for the tasks of daily living is now worse than before. The other day I called Peter from his study for our main meal of the day, for which I am still responsible (unless it involves the use of a sharp knife). I had set out the plates and took out glasses for our daily glass of red wine. When he got to the kitchen, though, I came to the awful realization that I had forgotten to cook. Totally forgot. Other smaller forgettings go on all day long: habitually leaving my keys stuck in the door of our apartment’s mailbox seven floors down; dropping our garbage and recycling bags through the wrong openings after faithfully separating them all week; unwittingly putting my toothbrush in the fridge; requiring Peter’s help numerous times a day to connect my hearing aids to my phone or figure out what’s going on with my credit card or explain the TV controller. My failings have eroded my sense of self—I have no confidence. Some days no courage to leave the house, even for a walk.
“Dying of Loneliness.” Jawahir Al-Naim, Al Jazeera.
My worst change, though, is that I have become really bad at catching jokes or determining Peter’s and others’ body- and facial signals. I think he is being mean when he isn’t. I am also rude to him: the other day I pushed the vacuum cleaner between him and the TV news while he was still drinking his morning coffee. I could have started vacuuming anywhere in the whole rest of the house, but it just did not occur to me. The look on his face was bewilderment. I realized what I was doing and started to cry. My constant memory failures suck the energy from my brain. Early in the day, I’m already exhausted. I have no energy or motivation for creative projects beyond just trying to live in the world. Though tired and overwhelmed, I’m bored for the first time in my life. The hours drag by.
The Lovers II, René Magritte (1928). Frustrated desires are a common theme in René Magritte’s work. Here, a barrier of fabric prevents the intimate embrace between two lovers, transforming an act of passion into one of isolation and frustration. Many days my dementia feels like a veil between Peter and me as well as between me and family and friends.
While I realize that in my building and city and all over the world there are people much worse off than me, I also know that before I can do the few things possible to help others, I must first fix myself. My “unalloyed reality” is that, for the foreseeable future, Peter and I will be stuck in our house, only rarely seeing our kids and grandkids and friends at a distance and with masks on. For the next six months (optimistically speaking), my daily life will not change outwardly. My brain will continue on its downward slide. But, on my good days, I still have enough reason left to know that I must live better than I have for months now. I cannot go on without hope, without goals, with mere existence. I have in the past come to other points in my life when I was forced to think deeply (and sometimes write) about how to deal with hard-to-take circumstances that wobbled my psyche. Along the way I have gained helpful insights. Time to bring them out of storage.
Can someone tell us why we are here? Olaf Breuning, 2010. Photo: Carolina Krieger
I am at heart an existentialist and accept the credo that “existence precedes essence.” There is no essence, no meaning to life, when a human being comes into existence. We live, but on the level of biology—existence is a drive, it’s what cells do. In order to enter full humanity, we have to create essence, or meaning, in time and in concrete, irremediably unique circumstances. We ourselves (or our parents, when we are new in the world) must endow our selves with meaning. As Sartre puts it in Existentialism Is a Humanism, “man (sic) first of all exists, encounters himself, surges up in the world—and defines himself afterward…Man (sic) is, before all else, something which propels itself towards a future and is aware of doing so. Man (sic) is, indeed, a project.”
Alexandra Levasseur, Tribute to Odilon I (2014). “We ourselves must endow our selves with meaning” (Sartre).
Peter and I have always been good at projects. Whenever there was something important to work out, for example, how to go forward after my dementia diagnosis, we called the family together for “a project meeting.” We had and agenda and notepads and pens, once even a clipboard. We discussed and wrote down the steps of a plan. If necessary, we held more meetings with information we had found and to report new ideas.
Alexandra Levasseur, Tribute to Odilon IV (2014)
Recently, after a particularly bad day for us both, Peter and I called a meeting with ourselves. Although we would talk with our family about it afterward, he and I alone would devise a plan that would propel each of us towards a meaningful future, al the while keeping the realities of our life in mind. We held our meeting the next morning. Armed with a notepad (me) and an i-Pad (Peter), we set out for Sugarhouse Park, picking up coffee along the way. We sat down our our portable chairs, spoke about the fact that our lives had shrunk, not only because of Covid but also because we were older and I had dementia and Peter spent a lot of his time helping me.
Gerda and Peter brainstorming in Sugarhouse Park
We discussed how, within the framework of essentialism, we could newly endow ourselves with meaning within our present circumstances. We revisited an insight we had come to a year or two into retirement: we had to rid ourselves of the working-world notion of “productivity.” Our new goal was living with joy. It did not matter if we worked a whole day on a task that did not end in anything useful. What mattered was that it 1) either made our daily lives work (grocery shopping, doctor’s appointments, laughing when we clean up things that I break, following Covid rules in order to keep healthy and prevent our kids from spending even more of their precious time on us) 2) or gave us pleasure: reading, binge-watching a TV series, walking by the river, sitting on the couch holding hands every evening. For me in particular, knitting or sewing (until I injured my hand), studying fashion and design, organizing cupboards and closets, all of which, in my years of working, had been guilty pleasures, seldom indulged; for Peter in particular, learning more about all manners of radio, keeping up with new technology and learning new computer languages, even if he does nothing with the knowledge. It’s about the sheer pleasure of knowing.) We could not, under 2020 circumstances, expand our lives outward. All our lives we had spent unconscionable hours on lofty life goals, whether we achieved them in the end or not. In this moment, we had to go inside our heads, assigning meaning and value to the little things in life.
During our celebration of Newton’s birthday, we all wore masks and he, Cheryl, Kanye, and Aliya set up separate, properly distanced tables for each of our 3 households. We each brought our our own food to prevent all of us from potentially spreading the virus germs on each other—but we did share a common dessert of pre-wrapped cookies and ice cream! While eating, we we discussed (among other things) who the currently shortest person in our family was. It turned out to be Aliya (10), who had just been passed in height by cousin Dante (7). She was delighted, as happy as ever to be special: “It’s the little things that count!” Above, while preserving the proper distance between us, Aliya teaches Ouma the latest moves from her virtual dance class from school.
During our meeting in the park, Peter and I brainstormed a list of tasks or activities that we formerly thought of as mundane—we would break these up into manageable chunks that would serve as daily goals. (Given my abject state of mind, I think of my to-do’s as psychotherapy exercises so that, if I felt unable to do them, I would imagine disappointing my inner therapist.) My activities included more Swedish Death Cleaning because I value the idea of “cleaning up after myself” at each phase of life; at the same time, it keeps my hands busy (relieves stress) while giving me time to think. (These manual tasks give me the same kind of pleasure as (in the olden day’s) cleaning up after a dinner party while reliving the conversation of the night before); I would also continue writing our family history for our grandchildren, though in a more basic form than the illustrated books I had been making for each of them—a task now too confusing to continue; indulge in silly crafts like “glue-gun animals to tree,” which had now become a Halloween/Christmas decoration; record the steps I walk every day, setting up a competition with myself; and write a blog post.
Peter, AJ, and Tim have socially distanced coffee at a park. Tim is taking the photo.
Peter and I also thought of activities that we enjoy doing together, but that got lost in the gloom. One of them was to invite each other for neighborhood walks to share something interesting we might have read or heard about or seen in our neck of Sugarhouse.
Left: Peter invited Gerda to see art commissioned by Salt Lake City to engender hope in the time of Covid. Each artist was given a canvas on which to do their art, then the entries were displayed together as a mural on a wall near our house. Right: I invited Peter to see a whole copse of trees uprooted from the riverbank, which I had earlier spotted on a solo walk.
Another joint project was to go to a different park in the city each week. A third was to take turns picking and buying a cake of which we could have one slice every evening with our after-dinner coffee: we have had marzipan-, carrot-, chocolate filled with raspberry mousse-, cheese-, and lemon-almond cakes, each of which gave us pleasure for almost a week. At last the time had arrived about which sweet-toothed me had dreamed since childhood: having dessert every day! Our days have become filled with little special events. Besides, if one writes these ideas on a list and check them off every day, the pleasure centers of your brain get spritzed with a bonus squirt of endorphins. You have to make hope every day.
When I started this blog 7 weeks ago, I chose Chagall’s Evening at the Window as the featured art, that is, the first thing you see about my topic of hope. What follows is how my understanding of the painting changed during the writing:
The photo at the start of my blog shows only the top half of Marc Chagall’s Evening at the Window. Here, above, is the whole painting.
At first, I chose to focus only on the top half of Chagall’s Evening at the Window because, amid my gloom, the blue bird looked like a dove to me, the symbol of rebirth after a catastrophe—maybe sufficient for even our disastrous year, which makes Noah’s forty days and forty nights on the ark seem short. Upon closer examination, with its untidy feathers and feet scrabbling through the air like a comic character just before its undignified downward plunge, my supposed dove looks more like a town square pigeon. Chagall’s oeuvre, though, shows that the bird belongs to an even more ungainly species, that of the artist’s signature roosters, often intended to herald the imminent arrival of morning. Since dawn usually signals better times to come, the detail seemed perfect for my topic. However, the work’s promise of easy hope is altered by the part of the painting missing when I cut out the detail showing the “dove”. In the bottom part of the painting, two (illicit) lovers stand by the window in a dark room. For them, daylight means that the secrecy of night will no longer protect them. Seen as a whole, the dark-colored inside surface areas balance out the dawn-lightened sky and crescent moon—the painting, in other words, is a mixed bag of hope and despair: like the more complex idea that Groopman introduced as consisting of ups AND downs.
A few days before today—the day I hope to finish this post—I spotted this image
during my and Peter’s walk to the Urban Art mural: the statement within the egg-shaped surround reads: “thankfully/ this thing with feathers/ just won’t let me be.” The words refer to Emily Dickinson’s 1861 poem, “Hope Is the Thing with Feathers”:
Dickinson metaphorically transforms “Hope” into a strong-willed bird that lives within the human soul—and sings its song no matter what. It was the most unapologetically upbeat representation of hope that I had come across during my long grappling with this writing. The appearance of this definition of hope in my very own neighborhood spun my meditation on hope full circle: I teared up, spilling salty drops into my mask, but this time because I was just plain happy.
While hazarding the hospital for a non-Covid emergency, Doña Quixote revisits her end-of-life decisions
Featured image: Ana Teresa Barboza: embroidery featuring bodily functions. There is no time like having emergency surgery during our worldwide reckoning with Covid-19 to revisit one’s notions of what the end of a life might look like. On the morning of Saturday August 8, I first became aware of intense, lingering stomach pains. By noon, I had to cut short an outdoor get-together with friends because of the increased severity of the pain. By 3 pm, the pains were unabated, and I started vomiting. Shortly after that, we called our family physician and was told to go to the emergency room at the University of Utah Hospital. After hours of tests, during which my pain did not budge before the medications offered, I was diagnosed with a blockage in the lower end of my large intestine. Given the life-threatening nature of such a blockage, I was scheduled for emergency surgery at midnight. Thanks to my privileged status of having medical insurance and being close to a great hospital, my life was not really in danger at any time. However, the experience of having to go to the hospital during a time when Covid death is all around us caused both Peter and me to think and talk about the thin line between life and death and circle back to the end-of-life plans we had made after my dementia diagnosis.
After five days in the hospital, I was happy to be at home—never mind the surgery cut that reached around my belly button down to the bikini-line scar left by previous abdominal surgery. Alas, my bikini days seem to be over!
During my misadventure, Doña Quixote (a.k.a. My Dementia) took a front seat, all but banishing me from the scene for the first few days. During the year before my hospitalization, Peter and I noticed an acceleration in my downward slide. Before the start of Covid, I started getting badly lost in the two formerly well-known malls that had been a haven of independence to me these last year. My kids and my American family have also noticed my downturn: I change topics in the middle of a sentence, drift out of conversations without noticing. I, who used to track the story in a movie perfectly, have to ask Peter all the time what’s going on in the video we’re watching. In the middle of going somewhere, too, I ask Peter where we’re going and he tells me “the doctor, Starbucks, grandkid night.” A minute later I ask again. Again.
A piece from Erik Thor Sandberg’s Cerebral Bloom paintings
Needless to say, with pain added to my usual confusion I was not able to say much for myself when we arrived at the hospital. Peter explained about my inability to give any information other than my name, and they allowed him to go into the inner sanctum of the hospital wards with me. After my surgery ended at 3 am (I would later learn), a nurse made a bed for Peter from the fold-out couch in my room and he spent the rest of the night with me. During the days after my surgery, he came to visit me at least once a day for a long time and for the first day or two acted as my communication interface with the hospital staff. A day or so into my stay, he discovered that my ongoing state of extra confusion was caused by a “misunderstanding” by which the hospital staff kept giving my narcotics as pain meds rather than just the Tylenol we stipulated when I was admitted. I would never have figured that out by myself. While I’m pissed that an untraceable employee of the U of U hospital made a prescription mistake, I was so grateful to the same hospital for having understood my need for a “translator” during my stay.
During my hospital stay, I experienced indignities of the kind that—if they should be permanent—I described in my my end-of-life plans as red flags that would indicate that I have reached a quality of life that I do not deem acceptable: I totally lost control of my bowels about four times, after which I groggily but stubbornly cleaned myself up in the bathroom/shower but for which I needed the nurses to bring me clean clothes and clean up after me in the room. Because fecal incontinence is not a usual after-effect of my kind of surgery, I had not been given any protective underwear such as Depends. I only received these after the fourth time. I also underwent projectile vomiting four or five times to the extent that each bout required a change of my bed and hospital gown and a big room cleanup—owing to my usual confusion, drugged state, and slowness on the uptake, I every time failed to locate the throw-up bowl with which they had supplied me.
My experience of confusion combined with almost total dependence on others for every daily need briefly threw me into conditions I had expected to experience in the late stages of dementia—conditions I had resolved not to live through once they became the pattern of my life. Peter and I, together with our family, had read, talked through, and watched movies about what happens to people in end-stage dementia. My family agrees with me that one should not have to live through them if the option of death is possible.
The quality of life in the last stages of dementia falls below what is acceptable to me for a meaningful life
After long-term family discussions about my dementia and other end-of-life scenarios, Peter and I each confirmed our wishes in writing: both of us decided that when we are utterly dependent on others and/or when what is most important to us—interacting with the people we love—is no longer possible, our wish is to die by a suicide for which the dying person alone is responsible. No legal jeopardy to each other or our family. My biggest fear is that I will miss the point where I can still mix my own death potion, bring it to my mouth, and swallow it myself. One day you can, next day you can’t.
With the help of my family, I have banished that fear. During a two-year process we called “The Saunders Family Dementia Project,” we figured out a way for me to obtain a legal assisted death when my quality of life drops down below a level that I find acceptable.
As a result of the “Dementia Project,” Peter and I—together with our family, doctors, financial advisor, tax lady, and lawyer—completed a financial plan, Last Will and Testament, and Advance Health Care Directives that give shape to our wishes. As you’ll see in the short film below, our children and their spouses were present when we signed the documents at our lawyer’s office.
Our family addressed, among others, the following questions: What is a quality of life or degree of incapacitation each of us would find acceptable? What 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 psychological consequences be? Under what conditions would each of us commit suicide or seek an assisted death? How would each of us react to another’s decision to end their life?
An excerpt from my Advance Health Care Directives:
“A worthwhile life should include joy, acceptance, ‘being with family, having the touch of others, being mentally aware, and not becoming a burden to others.’ Death is as much a reality as birth, growth, maturity and old age.”
We listed flags that would indicate when my quality of life is dwindling below acceptability: Do I appear happy for more hours per day than I am disaffected? Do I spend more hours per day consuming care than just living on my own? Are my caretakers’ children or jobs or marriages or health or quality of life suffering? Do I still make a positive mark on the world, no matter how modest? For example, do I still receive pleasure by cuddling with a friend or child or grandchild? Is it a pleasure for them or am I inappropriate and scary?
When enough of these flags are red, my family has agreed to support me in an assisted suicide. For someone with dementia, though, a legal assisted suicide is not obtainable in the United States. In states where assisted death is legal, only so-called “people of sound mind” can choose to die. Once you have a dementia diagnosis, you are legally no longer of sound mind. No matter that my Advance Directives are signed and sealed in our doctors’ and lawyer’s offices, my wishes before I have lost my reason do not count once I have lost my reason. Therefore, my family and I have planned what we call a “death trip” to Europe. If we can find a way for me to die at home without putting my family in legal jeopardy, we would much rather do that: one possibility is VSED, the voluntary stopping of eating and drinking. People with dementia, with the help of family members who remind them of their wish to die, have succeeded in starving and dehydrating themselves to death. However, VSED has to be done while I can still cooperate with my caretakers. Another possibility for ending my life is to hoard prescription opiates and barbiturates (which I am doing) so that I may use those to die at the right time.
Death tourism to Switzerland
My hospital experience of total dependence on several other people to just get through a single day brought my end-of-life plans to the forefront of my mind. It also emphasized the fact (often discussed in our family) that serious medical mishaps can happen in an instant and that nobody—however much you plan your last days—can ever control the exact circumstances of your death. For example, what if I do not have a gradual decline such as happened over the past nine years, but a sudden one? In the context of microvascular disease, which is the cause of my dementia, I am prone to blood clots in the brain. Some so little I don’t even notice at the time, but some could be large enough to cause a stroke. What happens then? Who in my family will decide whether to just leave me to die as I would want to, or call 911? Is it a reasonable idea to accept medical care until it is clear how big the damage is? But once one is resuscitated and/or hospitalized, you fall under what physician Atul Gawande calls the “seemingly unstoppable momentum of medical treatment,” even in the case that you might have sustained enough brain damage to meet the criteria in my advance directives. No matter how thorough my end-of-life plans, there will be a moment when Peter and my children will have to decide (or the family and I for him) not to intervene in a life-threatening illness or other medical emergency where the pace is much faster than in a dementia decline.
“Humans plan, god laughs”
When Peter and I decided to go into seclusion in March this year, we had each separately decided that we would not agree to be hospitalized or intubated if we contracted the virus: we felt that—given the then (and ongoing) scarcity of hospital resources—treatment should go to younger and stronger people with a better chance of long-term recovery; given our underlying medical conditions, combined with the long-lasting damage then already evident in intubated (particularly elderly) survivors, we believed that—even should we get through the arduous treatment—the damage caused by the virus-cum-intubation would result in a quality of life we did not deem acceptable. We informed our children of our decision and they promised to do everything possible to respect our wishes.
A July 31, 2020, article titled “From ‘brain fog’ to heart damage, COVID-19’s lingering problems alarm scientists” reports that COVID-19 “can disrupt a breathtaking array of tissues in the body…The lungs, heart, gut, kidneys, blood vessels, and nervous system are vulnerable.” Together with many other physicians, Adrija Hajra from Albert Einstein College of Medicine in New York City emphasizes the long and difficult duration of recovery and the fact that some people are left with what appears to be permanent, often body-wide, organ damage. She continues to care for those who were infected in the spring and are still recovering.
What my hospital stay and recovery at home also etched on my brain is that Peter would be the caretaker I would “use up” if I should permanently be totally dependent on him. (Although both my children and their families kicked in with food that kept us eating for days, with the danger of Covid they could not otherwise help.) Peter was my go-to person. I could see the wear on him as the days went on, even though he never said anything and did not lose his desire to help. Even though my time at the hospital and the help I needed afterward at home was not as long and presumably not as exhausting for him as a permanent state of looking after me in the later stages of dementia would be, the toll on his body and spirit was large enough. He himself has serious health issues, and the stress and physical hard work to care for me did his health no good. Fortunately I recovered to a point where I could be more independent within a week after arriving home—that meant that by then he had already gone through two weeks of stress and errand-running and cooking and caring for me. I would not ever want to put him through two more such weeks, never mind years of caring for someone who no longer talks or recognizes him. See the movie Away From Her, in which the husband of a woman with Alzheimer’s falls in love with a male patient in the care center. Heartbreaking, despite what seems like a “good” ending—one that doesn’t cut it for me whatsoever. I don’t want Peter or my children to ever go through such pain. I’d rather be dead.
Peter, my helper, my husband, my lover, my Rock. Photo credit: © Paul Hanseen, 801-637-0777
Despite the re-thinking that I’ve done at the start of Covid and during my recent hospitalization, I still find great peace in my family’s promise to assist me in dying in the most feasible way when the time is right. Planning and communicating with my family has freed me to take the best from each moment and live my daily life with joy. Their gift makes me feel similar to what religious people claim in the phrase “let go, let god.”
Lezley Saar. A piece from her Monad Series, 2014