End of 2017, Letter to Family Members and Friends

December 26, 2017

Dear family members and friends,

As the New Year is upon us, it’s a good time to reflect on the year gone by and count our blessings. I have had a lot of joy being a care partner for Sumi. I also have had a lot of challenges.

A smile on Sumi’s face brightens my day. And a frown provides me with a challenge to find the best way to divert and deflect her, so I can change her mood and perhaps see a smile.

Her needs are down to the basics. Just four pants with elastic waists, a few pull-over tops, sweaters, nightgowns, and as many adult diapers as she needs. One can say Sumi is Alipt (unattached) from the Maya (worldly things and desires). Almost in a Nirvana state!

I started My Journey with Sumi (MJWS) at the strong urging from many of you, my friends. Initially, I doubted my ability to write my reflections and was unsure of the benefits of writing about personal hardships. But you must have seen my capability and potential. I am grateful for your encouragement and support.

Reiterating, my three main objectives in writing MJWS are:

1. To increase the awareness of Alzheimer’s disease.

2. To share my inner feelings and thoughts candidly.

3. To let my writing be a barometer of my ‘state of mind.’ When—or if—in the future I falter, it could be an indication that I am not doing well and need help.

Having fully retired, I have the luxury of devoting myself to be a full-time care partner for Sumi. My extra time, I spend on a lot of self-reflection and self-analysis. As the ancient philosopher Heraclitus of Ephesus asserted, the only thing that is constant is change. I have been experiencing this first-hand.

With Sumi’s illness, I grieve. I have been grieving in a sort of ‘slow motion’ way. Yes, sometimes I cry in solitude. Tears can be healing. Dr. Joyce Brothers has said, "Tears are kind of emotional first-aide." The stages of grief are very complex and they could be shock, denial, anger, guilt, depression with excessive brooding. At some point, reflection and acceptance stes in.

When I initially found out about Sumi’s Alzheimer’s diagnosis in April 2013, I was shocked and the denial went on for quite some time. I had hoped the neurologist had misdiagnosed the disease and what Sumi really had was a mild cognitive impairment.

I was never very angry or depressed. The most of my grief was guilt. That I could have and should have been a better husband when our relationship was binary and reciprocal.

I have reflected before on my life as a young male raised in a competitive Indian society. That between its education and cultural system in a big city like Mumbai, it brings forth ‘alpha male’ traits. Always being on the go...always trying to get ahead….always needed to be correct.

Now, as a care partner, I am trying to tame this ‘alpha male’ in me and turn my guilt into Sumi’s service to become a better person and husband. I strive to be more loving, more caring, kinder, gentler, more compassionate, and strive for emotional equanimity. Changes in Sumi have precipitated changes in me. Sumi gives purpose to my life. Whether I am taking care of Sumi, walking with her in the YMCA, working in the yard, fixing things in the house, doing laundry, preparing meals, or other household chores...I do it for her.

I have been able to take the unintended consequences of this new situation and morph my suffering into becoming Sumi’s care partner, which has proved to be therapeutic. My anxiety, blood pressure, and hence blood pressure medications have gone down significantly. I am learning to recognize a ‘sense of proportions.’ Essential versus frivolous. Control the controllable and manage the uncontrollable. I feel I am at peace with myself. Those who know me closely or know me through reading MJWS may have observed these changes in me.

As always, the strength you’ve observed in me comes from you and the support you provided me throughout the year. Thank you for taking the time to visit us, call me, or contribute to MJWS.

As we reflect at the end of the year, I have one request for you. I would like you to notice the changes you may be contemplating within your own life, either as a reader of MJWS or through personally observing my journey.

The changes could be:

1. A change from within: Self-insight and self-analysis. The ability to demonstrate personal growth.

2. A change in your mind-set: To look at life differently. To understand that priorities and values, including your own, are not absolute. An awareness of life’s ambiguities like poor health, traumatic events, calamities, etc. Also, to get legal papers in order, as in a Trust, Will, Power of Attorney, etc.

3. A change in your personal behavior or habits: Taking care of your health, diet, etc.

4. A change in your relationship with others: A change towards your spouse, parents, children, siblings, loved ones, friends, relatives, and colleagues. The reduction in self-centeredness. The increase of generosity, to give back without needing anything in return. Less emotional volatility. Increased gratitude and acceptance.

Thank you for being there for me and Sumi. We love you all. Happy New Year!
Thodi Door Saath Chalo

Walk with me litter further

Ghazal, written by Ahmed Faraz and sung by Pankaj Udhas:
Kathin hai raahguzar thodi door saath chalo

Bahot kada hai safar thodi door saath chalo

Tamam umr kaha koi saath deta hai

Main jaanata hoon magar thodi door saath chalo

The path is difficult, walk with me little further

The journey is very tough, walk with me little further

No one accompanies the whole life

I know, but walk with me little further