Tuesday, April 20, 2021
Today’s weather is cold with light snow showers. Hopefully, this is the last snow of the season as the forecast predicts warmer temperatures for the next few days.
In all my posts and essays I talk about the happenings in my life and how I process and channel my thoughts and feelings. This essay, though, is unique. It may read like an article in a dietician’s magazine or a medical journal.
Over the last two and a half years, I plotted and analyzed data about the mundane, but very crucial, daily bodily function called the bowel movement (BM). This essay is a culmination of my work and can be read on my website: https://myjourneywithsumi.com/our-journey/april-2021/sumi’s-bowel- movement
There is a quote from author Peter Drucker,
“If you can’t measure it, you can’t improve it.” I find this quote particularly relevant when it comes to caregiving with respect to BM’s.
As a mechanical engineer, I’ve studied the design and workings of the Internal Combustion (IC) engine. Like any well- tuned machine, I paid attention to the efficiency of the IC engine by its input of gasoline or diesel and its output of exhaust gases.
A lot can be said about the IC engine by studying its exhaust gases. For example, exhaust gases are mainly comprised of two types: inoffensive and pollutants. Inoffensive gases consist of nitrogen, oxygen, carbon dioxide, water vapor, and hydrogen. Pollutants are mostly carbon monoxide, hydrocarbons, nitrogen oxides, and lead.
One of the main aspects of a well-tuned engine is the air-to-fuel ratio. Too much air combined with low fuel makes engines underperform. Rich fuel combined with low air produces more pollutants because of incomplete combustion.
I’m able to apply this concept in my caregiving. I have to monitor Sumi’s food intake—and her output. If either becomes unbalanced then Sumi’s digestive tract isn’t working ideally. This is like when the fuel-to-air ratio in an engine isn’t right and results in a less than ideal output.
Sumi is in her 10th year with Alzheimer’s. According to The Alzheimer’s Associations’ three stages, she is considered in the late stage of the disease. She exhibits many symptoms, which are highlighted in yellow in the chart on page 87.
Fortunately, Sumi is in very good physical health. Also, she isn’t on any medications. But with Alzheimer’s she exhibits the following behavior:
- she requires around-the-clock assistance with the activities of daily living (ADLs)
- she isn’t able to communicate her needs, discomfort, and pain.
- she has lost awareness of recent experiences as well as her surroundings
- she has trouble controlling her bladder and bowel movements (incontinence). This means she is unable to go to the toilet by herself. She wears sanitary briefs (diapers)
In 2018 and 2019, Sumi’s BMs didn’t follow any pattern. About half the time she would have a BM in the middle of the night which required cleaning and changing her. This disrupted our sleep.
As a care partner, I am always trying to find ways to help Sumi’s comfort—and thus improve my own caregiving process. At the time, I knew if there was a way I could help Sumi not have BMs in the middle of the night it would increase both of our happiness.
In order to start my search, I needed data. Since Sumi was not able to verbally express her needs, discomfort, or pain, I was the one who managed her different types of food input and output. She did not eat by herself and her food was prepared based on what I thought would be the best, well-balanced meal for her.
In early 2018, Sumi’s food intake was fairly regular but her output was not. I began monitoring her BM. This also served as a good tool to communicate with her caregivers and primary care physician (PCP).
I created a hand-made chart to track Sumi’s BM on a weekly basis on a 24-hour cycle (Figure 1). The AM cycle is from 12:00 am to 11:59 am. And the PM cycle is from 12:00 pm to 11:59 pm. This allowed easier readability.
On this chart, every BM is noted with a solid square to indicate the day and time of her BM. The size of the square is in proportion to the quantity of BM. The larger the mark, the larger the BM.
Analyzing the chart, I was able to find patterns. Sumi’s BM was almost equally divided between AM and PM. Most of the morning BMs fell between 3am and 6am
The early morning BMs and cleaning Sumi disrupted her sleep. And we both had trouble falling back to sleep afterward. I wanted to find a way to help avoid this issue.
But before I could do anything, life threw us a curveball. On October 8, 2018, Sumi was walking with my sister and me when she stepped on the edge of a concrete walkway. She twisted her right foot causing a hairline fracture in her ankle.
Sumi had to wear a removable boot. She needed a wheelchair inside and outside the house. It took six weeks before she was back on her feet and resumed walking.
However, during the recovery period, Sumi had slowly reduced her eating to a small quantity of food. With no intake, there was no output. On two occasions we had to take her to the Emergency room to receive an enema to extract the hardened stool (Figure 2).
Six weeks after her accident, when her cast was removed at the end of November 2018, with a very small food intake and hardly any BM, Sumi had lost 25 lbs (Figure 3).
I feared her decline would be irreversible. But then Sumi, thankfully, began to eat more food. It took a few more days and by the middle of December 2018 her BM returned to pre- fracture status (Figure 4).
Now, I was able to begin experimenting. I wanted to see if I could influence Sumi’s BM patterns. I wanted to move her BMs from early morning to evening.
But first I needed to collect more data. I crafted a whiteboard chart to capture Sumi’s daily BMs on a monthly basis and kept it near the toilet in the bathroom (Figure 5).
Figure 5
After collecting the BM data for the year 2019, I noticed the continued pattern of more BMs in the early mornings and fewer in the evenings (Figure 6). I decided to set up an experiment with multiple variables to see the effect it had on the timing of Sumi’s BMs. First, I wanted to normalize Sumi’s diet. Then, I wanted to adjust Sumi’s eating times. And third, I wanted to adjust Sumi’s daily physical activities.
I will explain each of these three variables in more detail.
In order to normalize Sumi’s diet I, with the help of Sumi’s other caregivers, bulk prepared and individually portioned her meals. We cut and cooked vegetables. And then divided them into twice-daily portions by weight (160 grams) (Figure 7).
Sumi also had a daily raw vegetable platter, again cut and saved into twice-daily portions for easy regulation (Figure 8).
Another change I made was to take out the bananas in her daily smoothies. Instead, I used raspberries, watermelon, blackberries, pineapple, blueberries, and dates (Figure 9).
Weighing Sumi’s meals allowed me to regulate how much she ate. I knew exactly how much the input was and hoped that would help me know how much output to expect. Her daily food intake was 1.43 kg or 3.14 lbs. Figure10 shows how many grams and what foods.
The next variable I changed was Sumi’s eating times. Before June 2020, Sumi had two main meals at 10am and 7pm (Figure 11).
As shown in (Figure 12), I decided to move some of her morning eating to 2pm and move all her evening eating up to 5:30pm. This allowed Sumi to have three eating periods and more time between her last meal and bed. My hope was this would help move Sumi’s BMs to the optimal times between 7pm and 9pm.
The last variable I changed was Sumi’s daily physical activities (Activities of Daily Living). I logged all her activities and found they fell into three segments (Figure 13).
Sumi spent, on average, 12 hours in bed both asleep and awake, six hours sitting, and six hours on her feet walking or pacing.
Before June 2020, I had Sumi walk in the basement for 1.5 hours in the morning. She’d also have two meals nine hours apart (breakfast at 10am and dinner at 7pm).
After June 2020, I changed Sumi’s activities so she didn’t walk in the morning. Instead, Sumi does her six hours of sitting. She also has a mid-day cold vegetable plate (while sitting) and an early dinner at 5:30pm. After dinner, Sumi does more of her walking to encourage her BM.
Over the next eight months, with the changes in Sumi’s diet, the timing of her meals, making her walk longer in the evenings, and some unexplained good luck, Sumi’s BMs gradually moved completely to the evenings! (Figure 14).
Another way to show this change is in Figure 15.
It shows over an eight-month period Sumi’s evening BMs rose from 12 to 36 BMs per month. This is depicted by the green line. Early morning BMs, in red, declined from 18 to 0 per month. And the total number of BMs, in blue, ranged from 30 to 38 per month. This is approximately one BM a day.
In conclusion, I’d like to thank Peter Drucker. His management principles worked. Sumi’s BM habits showed a vast improvement by measuring and plotting it over the last few years. Sumi’s bowels are emptied before she goes to sleep and she is tired from being on her feet for about six hours prior to bedtime. With this fine- tuned schedule and consistency, Sumi has been sleeping well.
With a good night’s sleep, Sumi’s mornings are also more relaxed. Her relaxed state has contributed to reduced anxiety and agitation. I, also, sleep better as I don’t have to clean and change her in the middle of the night.
This small victory, when it comes to my caregiving, makes me feel good. Even in the late stage of Sumi’s disease, I was able to change her habits. This was possible as Sumi is getting one-on-one, person- centered care at home. Also, I am lucky Sumi was not on any medications. I did not have to worry about side effects such as diarrhea and drowsiness that might affect her walking.
My chef friend, Vijay, has a saying, “Recipes don’t make chefs.” I don’t have a recipe for others to follow for what I did to change Sumi’s BM habits. It was experimenting with Sumi’s diet, the timing of her meals, her physical activities schedule, and deciphering her non-verbal cues.
To bring about a change in your loved one, imagine you are a chef who has to collect all the ingredients and data for a meal. Just like a chef’s magic brings out the best in a complicated dish, your magic is interjected to bring about the needed changes.
I know Sumi’s finely calibrated BM habits will change as her disease progresses. In our Journey there are many new normals. I will take this as another new normal which will end at some point. But for now, I am grateful it is happening.
When new challenges come along, I will study, measure, and analyze them to design solutions and mitigate them as best as I can.
And one last thought, every day I get my free smell test from Sumi’s BM while changing her and am reassured that I don’t have Covid!
(Please see an update on Sumi’s BM pattern from 2021 up to April 2024 on the following page)
Update: Sumi’s BMs maintained the same pattern through 2021, 2022, 2023 and the first four months of 2024.
In August 2021, Sumi had a seizure and had to be taken to the emergency room in a local hospital. For a few months afterwards, her BMs were irregular with only 92% of them occurring in the evenings for that year.
Over the past two years, March 2022 to April 2024, Sumi’s BMs have been almost 100% during the evenings – a remarkable achievement.