When the Caretaker Needs Care

Yes, that's my left foot.

About two weeks ago, after a lovely visit with friends and hot chocolate with whipped cream in a coffee bar, I slipped in dog shit and broke my left ankle. I was alone, in the dark, on a wide street with no other pedestrians around to notice my predicament. My high tolerance for pain enabled me to get up, walk two blocks to my car (stopping at a street fountain to wash the shit off my hand) and drive home using the clutch. Thinking it was only sprained, I wrapped the ankle, took some Advil, and had a bit of wine.

Three days later I realized I needed x-rays, and they revealed broken bones on the inside and outside of my ankle, requiring surgery. I knew I was going to have to pay for private service since I don’t have Italian health care set up yet (and probably would not do this sort of surgery in a public hospital anyway) but I needed to get it done quickly and with a minimal hospital stay. Luckily our doctor’s office came to the rescue with a very experienced American orthopedic surgeon specialized in hand and foot surgery and she got me into a private Catholic hospital close to home. I had

After surgery

the surgery the next day and spent only that night in the hospital. In another few days I get to switch from a cast to a boot and my healing is progressing nicely so far, plus I’m down to only using Advil for pain. Big sigh of relief, right?

Not quite. If I didn’t have two fantastic women who help me manage things at home, who know and understand my mother and her needs, and who were willing to take turns staying overnight so we had constant coverage, I don’t know what I would have done. In part you just don’t realize how much you do as a caretaker until you can’t do it anymore. You cannot even take something out of the fridge and get it to the counter when you have to walk with crutches.

For some time my mother had refused to let me order her a rolling walker with a seat for when she was tired of pushing it around. Now I realized I had to get one as I couldn’t risk her falling, and I decided I also needed a stool with wheels to roll around, at least in the kitchen. I also went online to buy cat litter, and stock up on grocery items that are heavy to carry. We tried ordering home

Better stick with Italian food.

delivery from a local restaurant for the first time and were disappointed by mediocre poke bowls. Our helpers managed all the rest and so we got through these two weeks with only one slow-motion late night fall as my mother was heading to bed.

We also had our Roman friends come to the rescue with a Sunday afternoon visit and a Christmas lunch feast, picking up our spirits considerably. My sister and her family cheered us on through FaceTime calls and it made them not seem so far away. Even though my mother would regularly forget what had happened to me, she started to catch on when she would see the cast on my foot, and her patience and concern has been of great comfort.

Now that I am facing the grim reality of not being able to drive or walk without crutches for weeks, not to mention months of physical therapy, I realize that the hard part is probably yet to come. I don’t know what it will be like for us to be constantly in each other’s company at home, to not go out to eat, or just for a drive or an errand. We’ll have to take taxis for important things like doctor appointments and blood tests (coming up in January) and I guess just learn to manage as best we can.

The research on the toll caretaking takes suggests that it’s not enough to carve out a bit of down time, to relax and take a break. I thought my twice weekly gyrotonic exercise classes were my sanctuary, keeping me fit in body and mind. I learned to do more than errands while my helpers were with my mother, to go for walks, to see an exhibit, or shopping. I was even plotting to take my laptop to a café one afternoon and work on the young adult novel I am writing, which seemed truly luxurious. For now, that will all have to wait. I have to focus on healing, and getting through the tough weeks ahead.

A Rainy Sunday

It’s rare to have a string of rainy days in Rome, but that is what was in the forecast this weekend. Because it is my father’s birthday on Monday we decided to do what we did last year and go to mass at the church where my parents got married in 1960, San Giovanni a Porta Latina. We easily parked outside the church and sat in the same place we did before, and the children’s choir was just as sweet as we remembered. I even took the same panoramic view of the interior with my mother sitting to the left as I had last time. 

Our moods lifted by the beauty of the church and the familiar mass and music, we drove to the nearby neighborhood of Ostiense to have brunch at our beloved Marigold (I previously wrote about our first lunch at this wonderful new restaurant run by a husband and wife team). We got there just in time to score a spot at the long central table on the end. We got to chat again with both Sofie and Domenico, even though it got very busy, and had our brunch favorites,

 
eggs benedict and avocado toast, while enjoying the pleasurable vibe of the international clientele. We bought some chocolate chip cookies, seeded rye bread, and granola to take home in a new blue Marigold tote bag.

The rain let up as we made our way back to the car, and driving along the Tiber we admired the green sycamore trees and the familiar buildings as we drove back north towards home. Then my mother wondered if our florist might be open, so we turned right at the piazza and sure enough his stand was full of buckets of pink peonies and potted hydrangeas.

As he wrapped our flowers he gave some extra fully opened short stem peonies to my mother for free, because that’s just the kind of wonderful generous man he is, and she delighted in arranging them when we got home. Usually our flower market day is Tuesday, but it’s also nice to have fresh flowers on a rainy Sunday just as Tuesday’s peonies were starting to fade. 

Then we napped. Some days it is the simple pleasures that bring the most profound feelings of gratitude. 

Thinking About Health

Seven years ago today I was released from the hospital after a three-week stay. If you have ever been in the hospital, you know that is a long time. I had perforated my appendix while in Italy but thought I had a bad stomach flu. I miraculously flew home, stayed in bed for a day, and then was so ill I had to be taken to the hospital in an ambulance. I was in full sepsis, kidney failure, the works. Antibiotics saved my life, plus an awesome team of nurses and doctors (in that order). This experience changed my life. I am certain that is true for anyone who fought a serious illness, or who continues to battle diseases both visible and invisible. Now that I am a full time caretaker for my mother and have been doing research on Alzheimer’s, I have a few thoughts to share on this anniversary.

Doctors can only do so much

Medical training is rigorous, competitive, and not for the faint of heart. It requires massive amounts of memorization, ongoing test taking and certification, long hours of practical experience which involves extended sleep deprivation, and undoubtedly causes considerable stress. Doctors have to make life and death decisions, sometimes in a moment of crisis, sometimes after careful research and consideration of all options. They make mistakes, and while most of us can agree that learning from mistakes is a part of life, for doctors, they may come with the burden of guilt, of fear, even sorrow.

These demands have led to extreme specialization, so it is increasingly rare to find an internist or general practitioner who has the knowledge and experience to see the big picture of a patient’s health, regardless of age, gender, and medical history. You see more and more that doctors will tell patients they must see yet another specialist. Each of these specialists is trained to prescribe medication, sometimes on a short term basis, but more often indefinitely. Having read the fine print on many types of prescription medications, I am willing to bet that most specialists cannot remember drug interactions except for common ones, and so they rely on computer programs to cross-check, but computer programs are not infallible, nor do they necessarily keep up with the latest research, which in turn can’t keep up with extant empirical evidence. Plus most side effects do not affect all patients in the same way. That’s why drug commercials have to say all the potential side effects as quickly as possible, to make us believe that those bad things won’t happen to us if we take the medicine.

When medicine can’t cure what ails us, doctors prescribe surgery. Surgeons can do amazing things, sometimes without having to cut open our bodies. My four hour surgery to clean up the mess of my perforated appendix (and remove my gallbladder) was done through a single incision in my belly button. I have no scars to show for my ordeal. All my scars are internal. That’s right, sepsis leaves a trail of adhesions throughout the abdomen, and even laparoscopic surgery causes scar tissue to form internally. Did anyone explain this to me? Of course not. I had to ask my surgeon about symptoms before finding out this lasting side effect, and on my own, had to learn about massage and exercise that keeps me from having any intestinal blockages and keeps my organs from getting stuck in scar tissue. My surgeon did tell me that unfortunately more surgery means more adhesions.

Now sometimes doctors need the help of psychologists to diagnose illness. In the case of various forms of dementia, neurologists usually have some simple-to-administer surveys and tasks that can assist in early diagnosis. In my mother’s case, this survey was farmed out to a young office assistant. My mother, insulted by the simplicity of the questions and the age of the young girl trying to figure out if she was having comprehension problems (which she was probably quite aware of and had been trying to hide and compensate for them for some time), refused to complete the test. I had to sympathize. What was the neurologist thinking? That he didn’t have the time or inclination to do those surveys with elder patients. But was he aware of how easily that eroded the patient-doctor trust that was the basis for his practice? Similarly I learned more about my heart and high cholesterol from the technician doing my exams than from my primary care doctor.

Nutrition is the first line of defense against disease

You are what you eat, how many times have we heard that advice and ignored it? Now the diet fads have cool-sounding labels like keto and paleo, and for those who need their healthy “food” on the go, we have $12 juice drinks made to order if you live in an urban environment where there are enough paying customers to keep such a place in business. Even though there is growing consensus that sugar is the most evil ingredient in our diets, American supermarkets continue to be palaces to mass-produced high sugar content food and drinks.

Grilled asparagus with agretti and chopped egg

We are lucky. Here in Rome fresh produce is abundantly available, and vendors do their utmost to make it easy for home cooks. You are craving mixed roasted vegetables? Buy a bag for caponata and all you do is drizzle some olive oil, add salt and seasonings and stick it in the oven. You need a hearty soup? Grab the minestrone mix, add water and rice, pasta, or potatoes and lunch is ready in no time. Even the artichokes are trimmed and ready to go in the pan when you get home. I regularly buy 5 kilos at a time of organic beef in various cuts through a friend who runs this as a side business. At Friday’s open air market I get seafood so fresh it came out of the sea the day before. The whole chicken from my butcher comes from the Tuscan countryside and cooks up to be juicy, tender, and full of flavor I didn’t know chickens could have. Our eggs (which we eat every day) are bright yellow and delicious no matter how we cook them, but they do make the fluffiest omelets and soufflés I have ever had.

This Mediterranean diet is delicious, full of variety, and does not lead to weight gain. All of our blood work shows that our health has improved in the last 18 months. Our eating habits have changed without causing us to despair or develop cravings for junk food. We don’t have intestinal issues or heartburn. We both take probiotics and supplements that I believe enhance the health benefits of this way of eating. In all my encounters with doctors, only two have discussed nutrition. One was my mother’s eye doctor here in Rome, who discussed the right supplements for eye health (for both of us) and for her macular degeneration. The other was my surgeon who said taking probiotics “wouldn’t hurt” and told me about his friend Dr. Peter Attia, whose writing has taught me a great deal about nutrition, health, and cholesterol. The only other times doctors mention nutrition is when doctors see my high cholesterol levels they tell me to avoid fat, beef, and eggs. That is old, old science, but it continues to persist in the profession.

We still don’t know much about the brain

Increasingly the medical profession is paying more attention to the role stress plays in developing disease, perhaps more so in cardiology where the links between stress and heart disease are most obvious. I am convinced my problems seven years ago were caused by stress, so pervasive and severe that even my weekly yoga practice wasn’t helping. Academics are typically perceived as having a “cushy” work life, with self-regulated working hours and a light teaching load. A recent heartbreaking profile of the late Dr. Thea Hunter brings into sharp focus how dramatic changes in higher education including labor practices have led to exploitation and work loads of adjunct, untenured, and junior faculty members that go far beyond common understandings of stress-inducing.

What decades of Alzheimer’s research has yielded in terms of treatment are drugs that work on slowing the growth of synapse-destroying plaques and tangles in the brain, with no clear cause, prevention or cure for this growing disease in sight. In Dr. Dale Bredesen’s research, he lays out the case

From The End of Alzherimer's (2017)

against the mainstream dogma that Alzheimer’s is a single disease characterized by the excess production of amyloid-beta plaques. “Our research on the different biochemical profiles of people with Alzheimer’s has made it clear that these three readily distinguishable subtypes are each driven by different biochemical processes. Each one requires a different treatment. Treating them all the same way is as naïve as treating every infection with the same antibiotic.” (p. 9) Bredesen goes on to explain that these subtypes, identified alone or in combination with each other, are risks for brain function decline: “inflammation/infection, insulin resistance, hormone and supportive nutrient depletion, toxin exposure, and the replacement and protection of lost or dysfunctional brain connections (synapses).” (p. 17) Standard one-size-fits-all treatments are destined to fail in these manifestations of degenerative neurological disease.

One truism that helps me on my quest to better understand issues of health and well-being, particularly in order to be the best caretaker for my mother that I can possibly be, is that the more you know, the more ignorant you feel. I do not want to leave the impression that I have little faith in the medical profession. My life was saved by people at the hospital, who kept careful watch over me for three whole weeks, and by my doctors who followed up with me in the years that followed.

The biggest lesson I learned was to listen to my body, to pay attention, to slow down and rest, to put good wholesome food in my mouth, to find ways to exercise that brought me energy as well as pleasure, and made my body feel better. If that sounds hard, it is. Kind of a lifelong mission actually, but well worth the effort.