While hazarding the hospital for a non-Covid emergency, Doña Quixote revisits her end-of-life decisions
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
August 30, 2020 @ 2:40 pm
Dear Gerda – I have just read through your detailed account of your hospitalization during COVID-19 and once again facing the reality of dementia and your end of life plans. I will never forget the week-end we met you last June in San Antonio. You left a mark on me that impacts on my work with families living with dementia. Thank you.
September 1, 2020 @ 5:18 pm
Dear Carol, thanks so much for your lovely note and for being in touch. I think of you so often and the really wonderful time I had with you and your colleagues in San Antonio. Thanks so much for still doing your much-needed work in these difficult times. I wish you and yours everything of the very best.
August 30, 2020 @ 3:33 pm
My dear sweet Gerda…. my HEART is with you and Peter! He was so good to let me know about your surgery! What a crazy time to have to go through all of that. I’m sorry it was so awful, but GLAD to know that you are on the mend, and especially that you have Peter. I loved reading your blog! I hope that next time I’m up in SLC, that we might be able to see each other for a few minutes! Take care and know that I LOVE YOU and respect EVERYTHING about you…. I truly do! LOVE Shauna XO
September 1, 2020 @ 5:16 pm
How wonderful of you to be in touch, Shauna. I think of you so often and it means so much to me that you wrote to Peter after my surgery and now again here. I’m glad the hospital stuff is over, and it’s lovely to by home. Just working to get my energy back! It would be lovely to see you any time you are in SLC. So glad to know you are happy and living your wonderful life with your new (and old!) family!
Anne L. Critchfield
August 30, 2020 @ 3:42 pm
What an ordeal this most recent hospitalization must have been! I know it may sound totally ironic, almost perverse, but personally I always find your comments – when you are able to voice them – clear and reassuring. You achieve a higher level of reasoning and meaning, Gerda, through the written reassembling and analyzing of lost moments. It helps me (all of us, I feel) to see a bigger picture. It is a good thing in these less than good times and for that, I thank you profusely. Oh that others in the world would only talk and walk and act with such clarity!
September 1, 2020 @ 5:13 pm
Dear Anne, Thanks so much for being in touch and for your kind thoughts. Your comments on my writing are very precious to me, even though they really are over the top! But I do cherish them. I wish you and yours just the very best in your lives. xoxox
August 31, 2020 @ 7:09 am
Love you ❤️
September 1, 2020 @ 5:12 pm
How wonderful to hear from you. In a week or two when I have my energy back, I’d love to take you up on meeting somewhere for a live talk. Lots of love to you and your wonderful family.
August 31, 2020 @ 8:12 am
Ek dink so baie aan jou.
September 1, 2020 @ 5:10 pm
Baie dankie, René. Dink aan jou ook en die te-min tyd wat ek in SA met jou gekuier het. Mooibly, en baie liefde.
September 1, 2020 @ 8:24 am
So glad dearest Gerda you still have each other and the children to lean on. What a hard time you both had with the sudden hospitalization. I send healing, loving vibes to you and Peter. Ria
September 1, 2020 @ 5:09 pm
Thanks so much for your kind note, my dearest Ria, and your good wishes to us. I am doing a lot better, though the energy is slow to come back. For the first time in my life I have spent many hours watching videos! Mostly just listening to audiobooks. Thinking of you so much and love your so much.
September 2, 2020 @ 2:33 am
I do not need to tell you how much I love you ,because you know that.
I admire you for your great courage and honesty my special friend. Even my own life is not the same since Derek’s passing four years ago. It is very difficult living without him. He was just SO special and I miss him SO much.
When I think of you I am surrounded by your wisdom ,compassion and a friendship of 58 years.
Much love always.
September 2, 2020 @ 8:27 am
So beautiful and rational and inspiring.
September 7, 2020 @ 5:21 pm
Thanks so much for your lovely remark, Shauna. High praise coming from a fellow writer! I miss you. Maybe we can dare a walk or distanced chat when the weather gets a bit cooler!
September 7, 2020 @ 5:24 pm
Dearest Joan, I have known from very soon after I met you until now that you love me–and I love you too. Thanks so much for your kind comment on my blog. I cannot even imagine how you must miss Derek–the two of you were always so close and loving each other visibly all through your marriage. He was an extraordinary man–and the perfect partner for you. I so treasure the times we visited you over the years and particularly your visit to us. Precious memories that live in my hear. Much, much love, my dearest Friend.
Sheena Steedman M Steedman
September 2, 2020 @ 1:24 pm
Gerda – you are my hero. And while I know that no day is promised, I hope I will have the opportunity to run into you and Peter at the coffee shop again for a little chat.
All my love to you and yours.
September 7, 2020 @ 5:20 pm
Dearest Sheena, how wonderful to hear from you this way. I can’t wait to frequent the coffee shop again and as a big bonus find you there. Hope everything is going well for you in these uncanny times. I wish you and those you love all of the very best. My love to you.
September 4, 2020 @ 11:05 pm
Dearest Gerda. I love your blogs. Your words paint these incredible visuals in my heart long before they reach my head, if that makes any sense! I ponder them for days, weeks even. I’ll find myself out throwing the ball for Belle and realize that my mind has popped back into one of the intimate and touching stories that you have had the grace and courage to share with the rest of us. It’s then that I feel, every now and again, that I’m actually walking a bit of this road along beside you and Peter, in the true and loving sense of family. We are missing you both and sending our love.
September 7, 2020 @ 5:18 pm
Dearest Mary, thanks for your super-special response to my blog. You could not say anything about my writing that I’d rather want to hear than that my words reach both your heart and your head. And thinking of my stories when you’re out with beautiful Belle just pushes it over the top in the happiest way! Plus that you feel you’re walking part of this road with us–we feel you there all the time. Thanks you so much for your love over all the years. We miss you too–but our zoom with you calls are a great comfort! We can even walk a little bit of the way with you as you bring up your oh-so-smart and cute puppy!
September 6, 2020 @ 8:03 pm
Brave. Brave. Brave.
Love you so much. Shen
September 7, 2020 @ 10:42 am
My dearest Shen–not brave. Just in denial that it’s ME who’s writing this. Easy to put it on Dona Quixote. The best about your note is that it affirms you’re back home! My heart is happy.
September 25, 2020 @ 2:29 am
Thank you for your reply I was so pleased to receive it.
Yes ,Derek was perfect for me. I must agree with you on that. I am wishing you a wonderful 71 st birthday for the 26 th September. Know that you will always be my friend even when you become a precious memory.
You taught me SO much my precious friend. I admire your honesty and great courage.
Much love always.
September 26, 2020 @ 5:58 am
Happy birthday to you dear Gerda. You are beyond special and I hope you are having a wonderful day. I admire your courage and honesty. You are a very special human being.
How you welcomed us to your home will stay with me forever. So will all the other times we spent together when we were just teenagers. You taught me so much.
Rich blessings and love to you.
January 17, 2021 @ 8:06 pm
Greetings from the neighboring state of NM. I don’t know if you remember me, but I have visited your blog many times and even commented once in the “Reply” section in the fall of 2019. You emailed me back, which was ever so kind.
I am so sorry that the isolation due to the pandemic was so painfully felt by you and Peter. I am also sorry you suffered and had to have emergency surgery, but I am glad you recovered and are home.
I will now try to present a few questions.
In 2019 I shared my mother had Alzheimer’s, and I lost my mother to dementia last January (2020). We were fortunate that we were able to bury her as a family and even have a memorial service prior to the shutdown due to COVID-19.
Unfortunately, I did learn at her memorial that Alzheimer’s runs in the family; my maternal great grandfather, my maternal grandmother, my maternal great aunt, my maternal great uncle, and my mom all suffered and were lost to this horrible disease. As you can well imagine, my anxiety and fear were given great momentum following my learning of this familial history. I am doing my best to cope, relying on family, continuing to work as a school teacher, walking each day, attending counseling sessions, and learning to quilt with the help of an amazing friend.
I know this seems like an odd email. Please know I do not mean to intrude or step on any toes by sharing my thoughts and feelings or by asking questions. Just know that fear sometimes leaves me feeling so alone with the thoughts and questions I have about the prospect of facing the disease that took my mother away from us. I totally understand if you feel you cannot respond or answer the questions I pose.
I have considered death with dignity, as offered by Switzerland’s Dignitas. Yet, I know others would judge me for such thoughts. I grew up in a Christian home and am struggling to come to terms with my own beliefs about God, a higher power, life, suffering, and death. I am in a physical desert in terms of where I reside and a spiritual desert due to what I fear may be in store for me in the future.
I just now read, “While Hazarding the Hospital for a non-COVID Emergency, Dona Quixote Revisits Her End-of-Life Decisions” and rewatched the video about the plans you have made with the help and support of a lawyer and your family. I wonder how you have “figured out a way…to obtain a legal assisted death when my quality of life drops down below a level that I find acceptable.” Are you saying you now have figured out a way in which you can access legal assisted death in the United States? I was wondering what you meant by that, as I don’t know of any state that allows for legally-assisted death for those with a neurodegenerative condition like a form of dementia. I was wondering if you would be able to share further in regards to that part of the article.
I have admired your artistic talents, most assuredly the words you write and speak. You are a lovely lady with so many gifts. I wish I could hug you, as you encourage so many with your bravery and fortitude along this journey. And perhaps the wish for the hug is somewhat selfish, as I so need one from someone who would not judge me for my anxiety and fear.
Thank you for at least reading my email. Thank you for your bravery. Thank you for sharing your gifts. Many blessings to you and yours–Hozho–
January 31, 2021 @ 5:33 pm
I’m sorry it’s taken me so long to get back to you after your thoughtful and thought-provoking comment. I am so sorry to hear about your Mom’s death and the bad news about Alzheimer’s running in the family that you discovered. Happy to hear, though, that you were able to mourn your mom’s death together with family before Covid made such gatherings impossible. I want to respond to your remarks and questions properly–in fact, I would like to do it in my next blog post. I want to ask your permission to quote parts of your letter, which I can do with your name or anonymously. I’d like to use your name and address my answers to you in particular, but if you wanted to retain more privacy, I could just talk to you as “a reader who wrote to me.” Please let me know your preference. I hope to get to the blog post soon. I have felt much better than after my previous post, but still have difficulty at times with lack of energy and motivation. But writing this post is my next goal! Thanks for the work you do as a teacher. My 3 grandkids are all in school and I so admire and feel great gratitude for the hard work that teachers like you are doing to keep kids motivated and learning. Hope to talk to you in more detail on my blog soon. Sending my safe at-a-distance mental hugs your way. Warmest greetings, Love, Gerda
February 17, 2021 @ 8:39 pm
I am sorry it has taken me so long to respond. Yes, you most certainly may quote parts of my post/letter with my name as you write another blog post. I would be honored to have you do that, as I so admire you for many reasons. Please do!
I look forward to reading the blog post.
Kindest Regards and Always Much Love,