Today, us Alzheimer’s advocates did it again! We advocated for over a year for the Elder Abuse Act during the 2019 Alzheimer’s Advocacy Forum in Washington DC.
We advocated for this bipartisan legislation that would ⬆️ resources to investigate elder abuse & neglect, while ensuring justice personnel receive specialized training on how to interact with victims of abuse & exploitation who are living with #dementia.
Our voices were heard, and now this bill is headed to the President for signature!
Since I became an Alzheimer’s Ambassador, this is the second piece of bipartisan legislation that the President will sign. As an advocate, it is important to keep pressing and making sure your voice is heard not only in Washington DC, but also the social media universe. In doing so, our single voice gradually grows.
** Special thank you to Congresswoman Val Demings-District 10. As her Alzheimer’s Ambassador, she heard our voices that afternoon at her office & immediately signed on the next day!**
Recently, a dear friend of mine encouraged me to apply to become a speaker for the Speaking Your Brand Live Virtual Summit 2020. When he told me to do so, I gave it some thought and briefly started to work on the questions. A few days later I became distracted and kind of forgot to complete it He messaged me that Sunday morning reminding me to complete the application. I was all sweaty from spinning class, but decided I should at least try, and if successful, my personal advocacy journey will be told to more people.
I worked on the application that mid-morning determined to finish. Then, the application required a video. I wanted to give up because I looked like a hot mess, and was conscious to film myself sans make-up. I really did not have the energy to get dolled up, and the clock was ticking because my mom was going to wake up soon, so that meant attending to her for a while. I was afraid if I put this application to the side, then I would not complete it.
I decided to do the impromptu video as I was- sweaty, with no make up. After all, this is my life as a caregiver- unpredictable! I completed the video without a script, it was impromptu, and from my heart. (below)
Days later, I received an email indicating that I was selected! I was really thrilled to see that email, and excited that I will be able to share my journey in hopes of inspiring others. During the course of the next few weeks in early to mid September, I had the privilege to virtually meet several accomplished women from across the country who too would share their passion with the rest of the country. The Speaking Your Brand Team assembled a top notch team to guide the participants through this journey.
My coach is based out of Washington DC, and has been super helpful to guide me to craft my speech. It has been a daunting task, and when the first draft was due I kept thinking what have I gotten myself into.
My writing style is very different, and to the point. I am used to bottling up my emotions, so had a difficult time emotionally putting words on paper. I am used to telling people that “I am ok” rather than going into detail, and really telling people how I am. Additionally, I did not realize that my mom’s cognitive challenges would change during this time, so it has been a very difficult time balancing that and crafting my story for this platform. Several times during Zoom calls with my coach, my mom gets up and down and randomly starts walking, and I have to get up to make sure she sits safely while I am on the call. I did not realize that these cognitive changes would be a draining experience for me. My mom does not understand what I am working on, and it is unfortunate that I am unable to share experiences such as these with her. At the end of the day, she thinks that I sit in my room doing homework for school, rather than work remotely. In her mind, I am still in school.
Overall, I am excited yet still scared to go “live” to share my story. To be honest, I have never been a public speaker until I started to advocate for caregivers and Alzheimer’s/Dementia. Once I start speaking it comes naturally to me, and I hope this is the case on the 15th. I still have just under two weeks to prepare.
I encourage you to sign up for this virtual summit taking place the afternoon of October 15th, so you can hear not only my story, but eight other powerful women share their journey as well. This in itself has been a learning experience, that I look forward to sharing with you.
By the way Thank you MW for encouraging and pushing me to apply!
Please register below for the Speaking Your Brand Live Summit (below)
As former Prime Minister of India, Indira Gandhi said, “Life is a continuous process of adjustment. “When my father suddenly passed away nearly twenty years ago, I never thought my privileged happy go lucky life would crash. Gradually, within two years, my mother’s mental state started to decline with clouded decision making, irritability, and her million-dollar-watt smile faded and eventually became non-existent. Hindu Priests manipulated the fact we are Brahmins, and created a paranoia in her delicate mind because they reassured her we did not perform my father’s rituals properly. Their solution was to instill fear at an emotional and financial price. My mom, my best friend, my sister suddenly felt like my enemy because we could not see eye to eye on anything, creating major meltdowns.
It was impossible for me to comprehend what was happening. Was she severely depressed, brainwashed or just losing the plot. It was very challenging for me to confide in people because I was ashamed to air our “dirty laundry” in public or even admit my mom possibly had a mental illness. I wanted to cry for help, but people would say my mom is naïve and delicate like a flower. Fast forward nearly two decades, at the age of 69, my mom has been officially diagnosed with dementia, a disease of the mind. Earlier this year, when I interacted with some Aunties and they inquired about my mom, and I told them about her diagnosis they said… she did it to herself.
The fact is she did not do it to herself, nor does she deserve to go through this journey alone. Dementia particularly vascular dementia does require a medical diagnosis and sadly cannot be cured. For those who are not aware dementia symptoms include: cognitive decline, disorientation, mental confusion, irritability, personality changes, wandering off, hallucinations, etc. There are days when her personality is non-existent, yet there are days when she behaves like a child at Disney World. Believe it or not, there are even days when she can’t even register my brother’s name and calls him by another name, or does not realize that she has three beautiful grandkids. The reality is, we cannot even talk about our papa because she thinks he is not dead, but rather ran off to be with another woman. No, she is not crazy, she has an illness that is slowly eating her brain away.
Just recently, I asked her if she would like to go to Patel Brothers to shop for groceries. The child in her immediately lit up and agreed to join my friend and I. Then suddenly in the parking lot, she became hesitant and withdrawn. She told me to buy the groceries and she will sit in the car because she does not want anyone to see her using a walker. She was terrified someone we know would recognize her, ridicule her for her appearance and dependence using a walker. I reassured her, and told her who cares what the world will say, I am your daughter and no one will say anything to you. She smiled got out of the car and walked the entire store aisle by aisle by herself with her walker.
Our Indian culture is beautiful, and I am proud to be Indian, yet I believe our culture is intolerant especially in regards to mental health issues. As a first generation Indian-American who works full-time, and is a caretaker for my mother, I want to be the guiding light for those reluctant voices who want to seek help, but afraid to. Yes, my life is in a continuous process of adjustment but when I go to bed I can confidently say I am trying my best and I do not care what the world has to say about my mother’s illness.
The Indian Caregiver 