Days when dementia is not the worst of my (micro)vascular disease

Featured image, Rosa Verloop, nylon sculptures

This is going to be a “woe is me” post about a topic that we usually keep firmly behind the bathroom door. Therefore, if you don’t want to hear about the degradation of my digestive system, get out now. If, however, you also have an annoying, embarrassing, or otherwise very inconvenient bodily situation or illness that erodes your daily quality of life, you may be interested in my thoughts about how such a condition figures into my end-of-life decisions.

Spire, Caitlin McCormack, 2017. McCormack’s achieves her crotchet- and thread-work sculptures  out of discarded thread. Once the crocheted object is completed, she binds it into a three-dimensional structure with enamel paint.

While lack of focus and lostness-in-my-self-and-the-world is part of my daily life, other effects of the vascular disease that causes my dementia have recently started to derail my ability to have what I still think of as a “normal life”: vascular disease is clogging up micro-vessels not only in my brain, but also in my pelvic floor and gastrointestinal (GI) tract: as informational websites discouragingly note, the impact on the digestive organs may range across “any [or all] segments …from the mouth to the anus,” and result in “a variety of morbid symptoms including dysphagia [difficulty swallowing, leading to choking and coughing], heartburn [another reason for my incessant coughing], distention, bloating, abdominal pain, nausea, vomiting, diarrhea, chronic constipation, incomplete evacuation [despite having had a bowel movement, you still feel you have to go], and fecal incontinence.” Not surprisingly, the article adds, “GI tract involvement is also associated with depressed mood and lower quality of life.”

Mixed media piece that includes embroidery art, artist unknown. Image source

While I’ve had life-long difficulty with my GI function, as an adult I have managed to keep my innards moving (sort of) with the standard treatment of drinking a lot of water, following a fiber-rich diet, and taking fiber supplements. However, during the past 5 years or so, this maintenance method proved to be no longer adequate. I would have repeated periods when all of my usual tricks would not budge my recalcitrant innards. Laxatives would help, but gradually the doses I had to take became bigger and bigger. Also, after a laxative it would take may days for my stomach function to start up again. My gastroenterologist told me that all forms of laxative were bad for an already vulnerable GI tract, since they decrease the good bacteria and increase the bad bacteria in the gut biome. He said it was okay not to have a bowel movement for  5 or 6 days. (Ha!)

An embroidery panel from Transylvanian-born Andrea Dezsö’s series Lessons from my Mother

Sometimes, while I tried to get closer to my doctor’s cut-off point before taking a laxative, my body would take its own measures: I would start vomiting uncontrollably, followed by—or worse, accompanied by—diarrhea. While this was happening, I wished that Andrea Dezsö’s mother’s was right about just dying instead.

Andrea Dezsö’s series Lessons from my Mother

When these “attacks” persisted over a period of months and became more frequent, were here to stay I saw my gastroenterologist. He prescribed a medication which is not a laxative but an agent that increases the chloride and water secretion in the intestines and thereby helps to stimulate bowel movements and relieve some of the other symptoms of GI tract degeneration. I started with the lowest dose and it provided great relief through more regular bowel movements.

A happy stomach makes for a happy brain! Brain, by Ukrainian artist Anastasiia Podervianska, 2020. Poderviansska’s interest in textiles sculptures emerged while working with her father on his theater performances as a costume designer. She also makes embroidery art.

Over the next 9 months or so, the positive effect of this medication gradually wore off. By then my gastroenterologist had increased my prescription to 3 times the initial dose. While, as before, the increased dose worked for a while, during the past month I had a recurrence of the same kind of attack  as before I started on the hoped-for fix. This time the attack lasted through a whole night and until the middle of the the next day. If one has to find some good in a stomach-load of badness, mine was that I was still able to clean up myself and the collateral unholy mess.

When the worst of the attack was over, I was exhausted and dehydrated. If one has to find some more good in a stomach-load of badness—and if you subscribe to our still-prevailing body “ideal” that “thinner is better”— my losing 5 pounds in two days could be that. For another day or two there was no chance of building up to my usual weight, since I could not keep even the simplest food or liquid down. I was drained of all energy. The “depressed mood and lower quality of life” associated with my gastric tract malfunction showed itself with a vengeance. Fortunately, I felt so weak that I did not as usual try to the futile fight against my lethargy—I was grateful to lie down with my audiobook and drop into sleep. The next day I was able to drink SouthAfrican rooibos tea, which was used by the Bushman as a dehydrating agent long before Western science had formulated electrolyte replenishments. 

Knitted intestines, Ben Cueva

Once I managed liquids, Peter went shopping for the foods recommended for accustoming my stomach to solids: for starters I sucked the juice out of watermelon and later ate the pulp too. Then I graduated to honeydew melon and oatmeal. From the day when the evacuation started, it took a week before I had recovered the energy to even get dressed in outdoor wear and go to our mailbox downstairs. It was a happy day when I could finally go out for air. My doctor has now prescribed the highest dose of the medication that is allowed, which is 4 times as much as what I started with. It’s only been a week or two, but so far things are going really well.

Millefleur, by Kirsten Hassenfeld. Salvaged textiles, mixed media.

The wide-spread occurrence and harmful consequences of vascular disease has been well known in the cardiac field for a long time. Peter has been dealing with cardiac dysfunction for a while, so we are very much clued up to that. Neither of us, however, realized—until the onset of my most recent troubles—how wide-spread the damage is that vascular disease can cause in every part of the body.

Body Box, by Caroline Gates, Anatomical Art

In addition to recently-put-together knowledge of the effect of vascular disease on the whole body, dementia research has discovered that it plays a far larger role than previously assumed in many dementias: in the case of Alzheimer’s disease, for example, neuroscientists found that “75%  of those with a clinical diagnosis of Alzheimer’s disease in life, up to 75% have co-occurring vascular pathology at autopsy. And vice versa, in those with a clinical diagnosis of vascular dementia, many have biomarker evidence of co-occurring Alzheimer pathology; more than 25% of patients over the age of 75, a diagnosed dementia frequently co-occurs with other not-yet-diagnosed dementias. Mixed pathologies are the rule rather than the exception in people with dementia.

Marjorie Taylor, “Art and Science #1,” 2000: The left- and right sides of the brain (pink at the center), the cerebellum or reptilian brain (blue), and the spinal cord (cream/white). The Museum of Scientifically Accurate Fabric Brain Art 

This most recent episode of my stomach dysfunction—and the brain-destroying- and other perils of vascular disease with which I am dealing—once again brought up thoughts about my decision to end my life at a point before my dementia takes away my ability to care for at least my personal hygiene. My stomach episodes had prompted me to send to my lawyer an amendment to my then current Advance Health Directive, namely to add another item to the list of flags that my desired quality of life is dwindling below the level of acceptability. Here is an excerpt of the flags already on the list:

• Do I wake up most days feeling joyful and excited about my new day, no matter the level of intellectual activity I am capable of?
• Do I look forward to more things than I dread?
• Am I insatiable in my needs and demands of my caretakers, be they family or care center personnel?
• Does it take my combined caretakers more hours per day to care for me than the hours I when I am not consuming care?
• Should I be at home, is/are my primary caretaker(s) stressed and worn out and constantly on the edge of a breakdown?
• Am I physically approachable without getting myself into a state of fear or anger; that is, is it still a pleasure for me to new near or cuddle with a friend or child or grandchild? In other words, do I still provide (and enjoy) “the comfort of a warm body?”

Kevin Womack, Sick Bed quilt from his Swaddling to Shroud series

To the kinds of flag listed above, I added:

• Am I still able to take care of my own natural needs (such as going to the bathroom, showering, and cleaning up after myself during a stomach “attack”) or do I require the help of one or a team of caretakers for my bodily maintenance?

(In the PBS documentary THE GERDA THAT REMAINS Peter and I go through this list and discuss some of the items).

Peter added the same “body maintenance” item to his list of circumstances when he would no longer want to be rescued or might choose self-death. The updating of these lists also made Peter and me rethink what our best actions would be in an emergency related to him (or me) that involved a heart attack or stroke. While we have had discussions about non-resuscitation should one of us be suddenly struck with something that has caused one of us, as we refer to it,  “to lie on the kitchen floor unconscious and/or unable to speak.” If I were the one left to make the decisions and execute the actions required it would be particularly bad—my dementia has made it impossible to choose between alternatives, even things as simple as chocolate cake or carrot cake. How will I be able to make the decision that Peter is injured seriously enough that non-resuscitation (which he wants) is called for?

Title unknown. Czech artist Nikola Emma Rysava’s work revolves “around the body, death, and mythology. My figures oscillate between states of power and vulnerability.

Should I just let him be and not call 911? We know that if you call 911, resuscitation will immediately be attempted before his condition could be properly assessed. What if he is already dead? A friend has told me the story of how the rescue team had tried to resuscitate her dad EVEN THOUGH HE WAS CLEARLY DEAD AND HIS BODY ALREADY COLD. Should I first call our children and get their opinion and then make the decision? What do we lose in the options for recovery and rehabilitation if I waste any time at all? Clearly, reality is so much more complex than any plans one could make: what you need in such a crisis moment is exactly what I do NOT have: the ability to think through a complex situation quickly enough to make the best decision.

We discussed this dilemma with friends. Some of them would get help regardless, some would follow the principle of “let nature take its course.” Someone mentioned a case in which one spouse did not call 911 for the other (according to that person’s wishes and end-of-life philosophy) and that the dead person’s children were very angry that they had not been consulted. While Peter and I have pledged to each other to follow each other’s end-of-life wishes, i.e., “if it looks like death or closeness to death, leave it alone,” we decided to speak to our children and their spouses about the topic.  Marissa and Adam as well as Newton and Cheryl told us to make the best decision we’re capable of and that they would never second-guess us. They also said that if we needed them there or just felt like speaking to them while the situation was unfolding, to do so. They would give their emotional support to whatever each of us decided.

Speak Louder, Nick Cave, 2011. Speak Louder invokes one of the artist’s favorite dictums: In order to be heard, you have to speak louder. The work unites seven of Cave’s iconic Soundsuits—or costumes that completely cover the individual’s body and thereby camouflaging the wearer’s shape through a second skin that hides gender, race, and class, thus compelling the audience to watch without judgment. Cave released his first Soundsuit in 1992, a “demonstration” against the brutal beating of Rodney King. Here, he creates a powerful ensemble by covering 7 individuals in a shimmering cloak of pearlescent buttons that brings them together into a figurative landscape. The figures’ tuba-shaped heads have been silenced, the mouths sealed off with dark fabric, imbuing the work with an ominous quality. Positioned in an array, but unified as one, the installation emphasizes the resilience of community. It speaks somberly to the losses of particularly African Americans and encourages them—and other viewers—to continue fighting for a better future.

Having discussed our dilemma and our feelings about it with our children, we feel relieved that they will stand behind any life/death decision that Peter and I may make for each other. We realize, too, that despite having talked through this type of dilemma between ourselves and with others, the actual situation in which either of us may have to make such a decision will still be confusing, uncertain, and the choices not clear at all. I—and I can speak for Peter too in this regard—I strongly feel that having used our reason to work through the situation with people we love makes the present better. Now that I am drifting from the realm of reason more rapidly than before, I am grateful that this uniquely human faculty still shows me the best way to live as part of my community. It gives me peace. And the courage to pick myself up and carry on, no matter the condition of my digestive system 🙂