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 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.
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.
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.
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.”
Featured photo: The RadioWest team, Elaine Clark, Kelsie Moore, Doug Fabrizio, Benjamin Bombard
Click here to see the so-far complete RadioWest films about my dementia.
RadioWest and I go way back. In 2001, Doug Fabrizio interviewed me on his then brand-new “intelligent” show about my book of short stories that dealt with my family’s emigration from South Africa to Utah. Doug had thoroughly read my book (no, studied it), prepared thoughtful questions that brought out nuances that mattered to me, and treated me with utter respect. Little did I know then that I would eventually participate in a film project with this kind, meditative professional, and that RadioWest would play a momentous part in a life challenge more difficult for me than immigration: my diagnosis—in 2011, at age 61—with microvascular disease, after Alzheimer’s the leading cause of dementia.
As I was putting the finishing touches on my memoir, Memory’s Last Breath: Field Notes on my Dementia, Doug and his producer, Elaine Clark, invited me to participate in a series of films about how my family and I are living with my dementia. That’s how RadioWest became part of my dementia journey and advocacy. After five films and a radio interview, I count Doug, Elaine, and videographers—first Josh Weathers, then Kelsie Moore—as part of my made-in-America family. Doug’s sensitivity to my emotions allowed me to open my heart. The whole team’s preparation for hours-long interviews with me and my family was unbelievably thorough. Their knowledge of dementia went much further than the information in my book. The interviews were at times very emotional. Doug, Elaine, Josh, and Kelsie were sharp observers of my psychological state, and frequently offered to stop if the discussion was too much for me. I felt respected—and loved. Filming time was marked by deep—I can say spiritual—connection, tears (not only me), lots of laughter, and total professionalism—not easy to pull off while they filmed me in weird situations, for example, as I struggled to shower and get dressed!
From left, Gerda, Elaine Clark, Josh Weathers, Doug Fabrizio in our kitchen/dining/entrance at our Roberta Street house.
Since my diagnosis, I have learned that I have thirty thousand Utah dementia buddies. Alzheimer’s/dementia is the fourth leading cause of death in Utah, while it’s “only” the sixth leading cause of death in the U.S. Moreover, ours is among the ten states where dementia is increasing faster than in the rest of the country—a 40 percent increase of dementia patients is predicted over the next seven years in Utah. Nevertheless, my experience (and that of the Alzheimer’s organization) shows that many Utahns with dementia in the family do not talk about it.
My peers at my Utah Alzheimer’s Association support group and I have experienced the stigma and shame associated with dementia in our state. For this to change, our citizens have to know more about dementia. Because of RadioWest’s videos of me and others with brain diseases and radio interviews with experts in the field—for example, David Shenk, who wrote The Forgetting: Alzheimer’s: Portrait of and Epidemic—thousands of people have been reached in Utah and elsewhere, as is evident from the people who recognize and talk to me in the library, in Costco, in Las Vegas, as well on the Champs d’Elysées in Paris where a French citizen stopped me to ask if I were the woman in the dementia films featured in Slate.
Pierre Bachelier, who recognized me on the street in Paris after seeing a RadioWest film. He now has newly graduated as “maybe the the only cool tax lawyer ever” from the EuropaCollege in Brugge, Belgium.
My story, of course, is just one of the hundreds that RadioWest has told on radio or in film. Their programs about people who cope with mental and physical challenges have been an education for me, as they are for my fellow Utahns as well as out-of-state-ers. My goal since my diagnosis has been to make a positive difference in the lives of people with dementia and those who love them by showing that my life is still very happy. RadioWest is helping me realize my goal.
Last year for my birthday, you wrote me a letter that includes this quote from The Velveteen Rabbit:
“It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because when you are Real you can’t be ugly, except to people who don’t understand.”
Your next sentence made me cry–then, and today as I read it again: “So kiss me softly each day in case the ‘real’ does hurt sometimes.”
In the new RadioWest film, you show not only me, but everyone who sees it, that “the “real’ does hurt sometimes.” A lot.
The Lacoön group: Lacoön and his sons being strangled by serpents (2nd century BCE–1st century CE, Greek, in the Vatican Museums).
I admire your courage to be vulnerable in this film in order to tell the truth of how difficult the path of dementia is for you. I know that my deterioration is agonizing for you, and you have told me that you cry a lot. Seeing you cry or knowing that you often hide your crying so as not to upset me hurts me far more than the fact of my dementia. I wish that “kissing you softly” could take away just an ounce of your huge burden every day, but I know that it doesn’t even come close. I wish that the last thing I will forget is your love for me. I am so very grateful that you have given me the utterly generous gift of helping me not to get to a moment where I no longer show my love for you.
You are wonderful to keep dancing with me even though I can no longer do the turns
Thank you so much for your honesty and bravery in making this film. You demonstrate so beautifully to me and our children and grandchildren the enormous challenge of remaining a loving, ethical, promise-keeping man even when life throws you an almost unbearable sorrow.
Thank you for making me “real” a long time ago. And keeping me “real” despite my loose joints and shabbiness.
Peter and I happened to have the TV on and watched it. We thought they did a great job in condensing 2 days’ filming to just over 4 minutes. Of course I wish that they had shown as much of Kanye and Aliya as they did of kissy little Dante!
Remember mid-April when Peter and I went to Seattle and visited the amazing book stores Elliot Bay Book Company, Third Place Books in Lake Forest Park, and Eagle Harbor Books on Bainbridge Island? Well, the primum mobile of our trip to Seattle was an invitation from the public TV program WellREAD to interview me about my memoir. See the bottom of this post OR the landing page of my website for PBS WORLD Channel air dates for the WellREAD TV’s interview. Note that the times are in Eastern Standard Time, so please check the time in your own time zone.
Right: Peter and I arrive at the WellREAD studio on the University of Washington campus. Left: What a warm reception we got from Kerri O’Farrell of the production company Two Dogs Barking, who represents WellREAD and the program hosts, Elisa Jaffe and Mary Ann Gwinn.
Right: For the first—and probably last—time in my life I had a dressing room with my name on the door! Two on left: Make-up artist Nancy’s professionalism, warmth, and beauty won over my usual “don’t touch me with make-up” attitude!
After last-minute adjustments on the set and in the studio, we are ready to roll. Here is a quick video clip of Elisa’s introduction:
PBS WORLD Channel air dates for WellREAD TV’s interview with Gerda:
Friday, June 23, 2017 – 4:00am
Friday, June 23, 2017 – 11:00am
Sunday, June 25, 2017 – 9:30am
