My First Letter to Family and Friends

My First Letter to Family and Friends about Sumi’s Alzheimer’s Disease
August 9, 2015
Dear family members and friends,

Diwali and Christmas are usually the best times to reflect on all that’s happened during the year…good and not so good. Well, this is not that time of year as Michigan’s summer is being pleasant and idyllic. But with some time on hand, I thought this was the best time to share what has transpired in our lives lately.

The most significant event in our life is Sumi’s health.

When well-wishers, friends, and family ask how Sumi is doing, a short and simple answer comes, “She is fine and doing well.” As her condition does not require any active treatment from doctors there aren’t any status or progress reports to give. Hence, the simple but difficult answer.

Sumi suffers from dementia of Alzheimer’s type. Normally, this disease strikes people in their advanced age but it’s not uncommon to manifest in younger years, 50’s and 60’s. No one knows the exact cause of Alzheimer’s disease. It strikes people from all walks of life. Some prominent people who had this disease are President Ronald Reagan, Prime Minister Margret Thatcher, Secretary of State Cyrus Vance, and Washington Post Executive Editor Ben Bradley. Others still, are boxer Floyd Paterson and actors Jimmy Stewart, Charles Bronson, Charlton Heston and so on.

Generally, the disease begins near the hippocampus—the brain’s memory center—and then spreads to the areas of the brain that control language, judgment, and motor control. In the earliest stages, before symptoms can be detected with current tests, protein pieces called betaamyloid (BAY-thud AM-uh-loyd) clump together to form plaques. Since beta-amyloid is chemically ‘sticky,’ the gradual build-up of plaques kill neurons and then form ‘tangles’ of protein fibers that disrupt the neurons’ transit system. Eventually, communication between neurons breaks down, affecting learning, memory, thinking, planning, speaking, understanding speech, and the sense of where your body is in relation to objects around you.

This is a degenerative disease, meaning the plaques and tangles get worse over time. There is no cure and no treatment to stop the spread in the brain. The rate of progression varies greatly. The course of the disease depends in part on the age at diagnosis and whether other health conditions are involved. In later stages, individuals lose their ability to communicate, recognize loved ones, and care for themselves.

The following link has more information in the form of a slide presentation with a healthy brain versus a brain with the disease: https://www.alz.org/braintour/3_main_parts.asp

When one door starts to close, others open up...that’s what is happening to me. As a caregiver, I am learning new behaviors, attitudes, interpersonal skills, habits, and the running of day-to-day chores.

Sumi is mostly cheerful. However, when I am tense or upset, she becomes tense and upset. Conversely, when I am relaxed and happy, she is relaxed and smiles. She directly reflects my mood. I do upset her sometimes, but I continuously strive to be cognitively aware of my behavior and actions to try and be more loving and compassionate. This change in my mindset has benefited me as well. I believe it has reduced my anxiety and stress and also improved my wellbeing, both physically and mentally.

Sumi and I cook together. She mostly preps and cleans, and I do the rest. We have been eating very well and lately she has, intentionally, gained a few pounds. She takes care of her daily routine things, albeit slowly. I have learned to shop for her clothes and how to help her wear her sari when we go to parties.

Many challenges married couples face is from the difference of opinions and how one goes about discussing and resolving those differences. When I reflect on my life, as a young male raised in a competitive Indian society and its education system, it’s typical to develop traits of an ‘alpha male.’ I strived to always be right...always correct. I hated to lose arguments, marital or otherwise. Now, though, taking care of Sumi I have to cognitively control my ‘alpha male’ tendencies and remind myself that she is right, even when she isn’t due to her medical condition. It feels good to purposely lose a point. And I wish I had developed this awareness of letting go earlier in my life.

Life’s ambiguity teaches new lessons. Having trained as an engineer, one becomes self-critical and manifests excellence in everything one does. When you create or rig-up something, you try and achieve the best quality in fit, finish, and craftsmanship. Now, I still control what I can but have learned not to control the uncontrollable. When I notice Sumi hasn’t cut the vegetables evenly or is drying the slightly soapy dishes before completely rinsing them it does not matter. The food tastes just as delicious and the dishes are still clean and hygienic. Equanimity is now the name of the game.

There are hardly any dull moments. The tasks vary widely. In a day, I can be tending flowers or tending Sumi’s needs. Power-washing the driveway or washing clothes. Fixing something in our newly renovated kitchen or fixing a meal. Working on my consulting assignments or consulting with doctors. Reading at least 5 to 6 online newspapers. Calling India to connect with family. Grocery shopping (the best cilantro deal is at the newly opened Patel Brothers with 2 bunches for $1). Paying bills. Going for my daily 3-mile walk...and so much more. Sumi has been great through it all. Always ready to participate, help, or patiently observe.

Some twenty years ago, it was common to take Dale Carnegie’s 12-week long, once-a-week, course or read his book How to Win Friends and Influence People. One of Dale Carnegie’s principles is 3 C’s. That is, don’t Criticize, Condemn, or Complain. I had taken this course but find practicing the 3 C’s difficult. Sumi never took the course but I have observed her practice the 3 C’s throughout her life and even now. She has influenced me more than Dale Carnegie ever could.

As I write this, it is a beautiful, perfect summer day. Bright setting sun, low humidity, and 780 F. These summer days will soon change to autumn and then cold brutal winter, but today is a day to enjoy.

I am like a mountaineer, who plans assiduously to scale mountains. His moment to moment tasks boils down to prepare him for the next step he is going to take. Every next step is his first step. He does not dwell on the extraneous.

A Hindi song from the movie Waqt, sung by Asha Bhosle with music by Ravi and lyrics by Sahir Ludhianvi, comes to mind:
 
Aage bhi janey na tu
Piche bhi janey na tu
Jo bhi hai, bus yahi ek pal hai

 
Translated:
 
You don’t know what’s ahead
You don’t know what’s behind
All you have is this moment

Sincerely,
Kanu C. (KC) Mehta