“Charlotte!”

The piercing voice of a loved one, beckoning someone from the grave.

Alzheimer’s, a dreadful disease, has claimed more than fifty-five million brains worldwide, distorting thoughts and emotions, wrecking neurons indiscriminately. The statistics are well-documented, the fear extremely real. Anybody who has come face-to-face with the disease recognizes its impacts.

Alzheimer’s becomes torture to the victim, stealing away the priceless: memories and connections. No victim ever realizes that they have been affected, as they repeat themselves, forget once-ingrained information, and suffer with subsequent debilitating health issues.

Yet, underneath it all, a spouse, a daughter, a son, a grandchild, watches their partner, parent, or grandparent fade away. What remains is a body, but not really the one you love; still alive, but not living, an empty husk, and right beside them, a caretaker.

Alzheimer’s is destructive. It brings damaging biological effects in a series of stages.

At first, forgetfulness and an inability to retain information recently conveyed are among the first, most noticeable changes. That eventually accelerates into more sustained problems, making some individuals more belligerent and easily agitated. Unfortunately, once Alzheimer’s progresses into its later stages, people lose track of central information such as their children’s names, or whether loved ones are still alive. The final result is the same in almost every case: people’s bodies forget to complete basic functions essential for survival, growing incapable of chewing or consuming food.

It claims other victims, forcing the patients’ families to watch their precious loved one, whom they shared coffee with, shared a home with, slowly wither away into oblivion.

I have had the misfortune of experiencing this first-hand. My grandmother, who passed away a little over a month ago, struggled with this disease for many years. It was, by no means a sudden development, as letters she wrote document memory challenges and deficits as early as five years ago. Still, towards the end, the progression occurred rather quickly, as she eventually descended into nothingness.

She was fierce, yet warm; a quiet partner for my gregarious grandfather, yet a “friend-collector,” and a conversationalist in her own right. Listing adjectives to describe her can only paint so vivid a picture, but, prior to her illness, she was a vivacious person. Sure, she was forgetful; she repeated herself, said “whatchamacallit” to replace words and places, but that was her.

Eventually, this tragic fraternity added a new member, and the slow, grudging progression towards Alzheimer’s began. What started as forgetfulness, maybe a question about deceased relatives, evolved into a really rough situation. She would call our home dozens of times, worried about her future, namely whether she would be put in a nursing home. She would ask about her dead husband’s whereabouts and mention plans to attend classes at the local college, something she had done before the pandemic when she still had sufficient strength. These requests were seldom rooted in reality, as they often brought up events from several years prior, things that were simply not possible given her circumstances.

Sometimes the calls were gut-wrenching, full of yelling and belligerent language.

It sucked.

The alternative, however, was worse. As the condition progressed, she could not formulate ideas, could not speak. Her body became empty; there was nothing behind the once-lively brown eyes.

Nothing prepared me for the silence.

My grandmother lost a daughter at an extremely young age to Leukemia, untreatable at the time. When confronted with that, she set aside money every year to donate towards research, science, and organizations dedicated to curing the disease that claimed her child and devastated her. Luckily, that sickness is now curable. In her words, “she died so that millions more could live.”

In light of her passing, it only seems fitting that I continue this commitment to use my voice to make a difference.

There is more to handling Alzheimer’s victims than the person themselves. For starters, practical concerns, such as looking for viable assisted-living options and connecting with specialists and doctors, require time and energy, and, without proper due diligence, those issues arrive unexpectedly at your doorstep. Trust me, emotional bandwidth dissipates quickly, and, much like the victim, you wind up feeling alone and helpless.

“You’re trying to put me away!”

“You are ruining my life!”

Listening to your own parent insult you, threaten you, and disregard your emotions is heartbreaking. I watched it happen to my mother. Still, you never really understand it until you see it first-hand.

Know, though, that for all the struggles and hardships, there are resources designed to help. You are not alone in this fight.

Speaking from experience, there are exceptional organizations capable of having a substantial impact. Having people to listen, instruct, and support you is invaluable. Whether it be seminars surrounding how to approach your affected loved ones or resources to find assistance, these organizations have the potential to provide a guiding hand to a complicated, devastating process.

One group making a difference is CaringKind.

CaringKind focuses on caregiving and support for victims of Alzheimer’s and dementia, and their families. They maintain helplines, staffed and run by caregivers and specialists. Their countless opportunities to interact with fellow people dealing with Alzheimer’s or dementia, all struggling to handle the loss of loved ones, is truly meaningful and fosters deeper discussion around the subject. Not to mention, sharing emotional trauma with people in similar positions is extremely beneficial.

Too often in this world, topics like Alzheimer’s, especially when they strike close-to-home, evade discussion. Those affected are scarred by its impacts, and speaking openly about it can feel too difficult. The existence of these services, though, indicate that sharing one’s experiences can be productive. Helping oneself is always primary, but these support groups create environments where each victim is capable of genuinely helping another.

I have no clue who was on those calls with my mother, but they mattered to her. Listening provided solace. It also further exposed the reality of the illness, not merely as a personal point of strife, but rather, as a life-altering condition, damaging millions of people across the world.

Specific services offered include caregiving partner education, geared towards people like my mother and myself, living with the constant burden of a loved one with Alzheimer’s. These services, spread largely through webinars, attempt to inform loved ones about the disease, its progression, and its stages and effects. However, they also provide advice on handling loved ones.

People who have not experienced Alzheimer’s first-hand might be unaware of certain tactics one must employ when engaging with patients. For one, a person with dementia repeats themselves quite a lot, telling the same stories countless times or asking questions a dozen times over. Those are harmless, though. Not every discussion is. Conversations about deceased relatives or the patient’s current location requires a more delicate touch. Simply nodding does not suffice.

In the more severe cases, these educational services offer a framework for speaking to that loved one, finding ways to validate their ideas while not blatantly lying. In my experience, “he is gone,” was the worst thing I could say when my grandmother asked about where my grandfather was.

CaringKind VP of Community Engagement Chris Douchette and I spoke about their mission. Douchette has been working at CaringKind for a decade now, leading their fundraising efforts, and communications and marketing.

As detailed above, CaringKind offers a wide range of support services, which Douchette cited as the organization’s greatest strength.

“We can support people through every step of the diagnosis,” reflected Douchette. Their helpline, which Douchette named, “the signature program,” serves as “a gateway to all [their] services.”

My family utilized the webinars in particular, but the “comprehensive level of support” that Douchette is so proud of truly creates a “safety net that helps families cope.” Douchette spoke at length about the multi-dimensional impacts of Alzheimer’s, from diagnosis to caregivers to families and beyond. CaringKind meets that challenge with equally varied and plentiful resources, focused on “delivering care” for all those affected.

Douchette also discussed the educational component and how CaringKind aims to inform people about lifestyle habits that can decrease one’s chances of receiving that unfortunate diagnosis. He emphasized staying physically healthy and how, despite a lack of a cure, people can slow the progression. Using CaringKind’s resources, people can educate themselves about the disease, and habits that better protect against the illness. Statistics have shown that healthier eating, more social engagement, and other factors play a direct role in preventing Alzheimer’s.

Following my grandfather’s death, the daily isolation felt by my grandmother from living alone certainly appeared to contribute to the development and quick progression of her condition. Understanding the implications of these factors helps people with early stages of dementia best combat it.

In addition to the services designed to alleviate pain and provide support, Douchette introduced another dimension of CaringKind’s reach: reducing stigma.

Douchette highlighted two specific programs that aim at that mission, including an award-winning podcast. For him, CaringKind serves an essential role, “helping provide a platform for people with Alzheimer’s and dementia to tell their own stories.” In doing so, Douchette has recognized that not only have more people volunteered to speak, but that people “see there is no shame regarding a physical illness.”

Chris referred to the podcast, “Caregiver/Storyteller,” which he created and still facilitates, as “the thing [he] is proudest of.” He describes it as an open forum, in which he interviews “families struggling with Alzheimer’s and dementia,” and “lets them talk.” The podcast has received acclaim, and its impact is noticeable. People have commended the podcast, praising it as “comforting” and moving. Each guest shares personal stories in an effort to really help people cope, knowing that they are not alone.

Through this forum, Douchette and CaringKind are fulfilling their mission to reduce stigma while opening the door for discussions about Alzheimer’s and its impacts.

Another program Douchette highlighted is To Whom I May Concern, where people with early stage dementia write a script of their own story. They then perform that authentic piece to a live audience. Douchette spoke highly of this service, hailing it as “moving.” As he put it, “to watch people with dementia entertain an audience changes people’s perception on what the illness really means.” He continued, citing it as “a perfect example of the transformative power of CaringKind’s work.”

Unfortunately, with CaringKind’s devotion to patient and family help, marketing can be tough. Getting the word out without spending money makes life difficult. Still, Douchette and CaringKind have marathon and half-marathon teams, annual galas, and charity walks designed to help fund their mission.

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Participants and volunteers walk in the annual CaringKind Walk in Central Park, where proceeds go towards funding CaringKind’s mission. (Photo Credit: Used by permission of CaringKind)

Within CaringKind, the Teen Board, a group of teenagers committed to raising awareness and funds towards Alzheimer’s research and support, has really demonstrated the potential to get involved across generations.

I was fortunate enough to speak to Sarah Phillips, a recent New York City high school graduate and current President of the Teen Board.

Phillips created the CaringKind Teen Board two and a half years ago, inspired by her grandfather’s ongoing struggle with dementia.

“I was looking for a teen group that I could relate to. I wanted to create a space where we could talk about our experience and effect positive change within the Alzheimer’s and dementia community.”

CaringKind had proven itself to be a valuable resource for Sarah and her family, as they had utilized “their remote resources” to help cope with her grandfather’s dementia. She praises the organization as being “helpful from the beginning.”

Phillips and the growing teen organization within CaringKind have fulfilled their initial idea, participating in the annual CaringKind walk, a fundraising event held in Central Park. The group donates money towards research to find a cure and engages with specialists by “hosting webinars and interviewing scientists” to further advance awareness of Alzheimer’s. This has extended into their school communities, as many of the members have spread the message, connecting with others along the way.

In raising awareness within their communities, Phillips and the Teen Board have helped cultivate an often overlooked population of impacted people. Subsequently, by increasing support among younger people, many of whom exist in the same school, Phillips is combating one of Alzheimer’s most devastating byproducts: isolation.

“Alzheimer’s and dementia can feel so isolating, so it has made me feel less alone being around so many teens with similar experiences,” commented Phillips about connecting with fellow students.

The message was quite simple: “create a space where we could talk about our experiences.” In the process, Phillips hoped to “affect positive change within the Alzheimer’s and dementia movement,” which manifested in increased awareness, more research, and, eventually, an opportunity to “solve the root of the problem” and find a cure.

Despite its recent surge into the limelight, Alzheimer’s, which Phillips noted, “has been around since 1906,” has seldom been at the forefront of scientific research. Initiatives to cure the debilitating neurological illness are relatively recent, especially when compared to the timeline of other serious degenerative conditions.

For Phillips and many others, emphasis on Alzheimer’s and dementia research is long overdue. She cites the age of the affected, around 70 for Alzheimer’s, as a primary factor for this lack of motivation.

“I think people are so focused on cancer, or helping diseases that manifest in younger people, but we are also neglecting older generations.”

Awareness is a driving force in helping motivate people, especially the future generations to continue the “fight for a cure.” There is a link between activism and action, from the street to the labs, and, for CaringKind, getting the word out further advances the scientific work done.

Phillips and several members of the Teen Board are attempting to do both, as Phillips’ passion for neuroscience has enabled her to conduct research related to Alzheimer’s disease for the past three years. Doing that allows them to fight the disease from both the scientific side and “from a volunteering lens.”

Still, Phillips expressed optimism for the future, citing her experiences with people in the same position as reason for hope. People like Phillips, who turn personal strife and tragedy into action, mean the fight against Alzheimer’s will be getting reinforcements from a new generation, inspired to “put an end to the disease” once and for all.

CaringKind’s reach has expanded, but it still remains a largely New York-centric movement. As far as national awareness goes, the Alzheimer’s Association remains the most prominent national organization devoted to Alzheimer’s support. With a similar goal, the organization prioritizes educating the population, finding ways to eliminate the stigma associated with the condition. Phillips mentioned this in our discussion, speaking about another member of the board and the cultural tension surrounding the topic.

Given their national reach, the Alzheimer’s Association has been able to fund more than $320 million towards efforts to combat the condition. More relevantly, however, the group has a wide range of resources devoted to patients themselves and caregivers.

I can speak to the incredible role caregivers can play in the process. My family was fortunate enough to have the resources to hire a live-in aid who provided invaluable help to my grandmother during her last few months. All of my family owe a tremendous amount to the work of those caregivers, and understanding their value makes these online resources even more significant. The Alzheimer’s Association deals much more with professionals and patients. Nonetheless, their illustrious wealth of options for educating, training, and better equipping caregivers represents another method for combating the effect of the disease.

Alzheimer’s is most certainly not contagious, but its reach transcends simple transmission. Having somebody by your side, able to handle your loved one at their very worst, is an extraordinary privilege. It provided a little bit of solace amidst strenuous times, which makes the availability of resources from this organization a triumph.

I began writing this with a fairly straightforward idea: keep practicing what my grandmother preached. Inform people about resources, and try to reach out through my strife. If I can comfort just one other person, lost and unsure of how to deal with this new unfortunate adventure, I will have fulfilled that mission.

Loved ones pass away, but it need not be in vain. Through the work of CaringKind, its Teen Board, and the various other organizations, such as the Alzheimer’s Association, devoted to combating Alzheimer’s, the future generations are making good on their hardships.

Phillips’ grandfather, who still suffers from dementia, prompted the founding of an organization. I hope my grandmother’s passing can mean something not just to me, but to the greater movement. I will try, as my grandmother did, to leave an impact, however small, on an issue I have experienced. She would have wanted that.

I seldom reach for faith; it is not my nature.

But Grandma, if you stumble upon this in another life, I hope it makes you proud.

If you are so inclined, please donate here to CaringKind or the Alzheimer’s Association, and help continue this ongoing fight against Alzheimer’s.