On February 22, 1938 in Trenton, North Carolina, my grandmother, Mary Ellen Eady, was born to Hattie Bell and John Brimmage, who worked for the federal government. Her birth was overseen by a midwife, a fact that reflects her rural upbringing on the farm, within a house that resembled a log cabin. Though she was born as an only child, she had a plethora of relatives to interact with. Growing up with 22 aunts and uncles, and an even greater amount of cousins, her childhood was anything but lonesome. A child of the 1940’s South, my grandmother was very outgoing and loved to play hopscotch, marbles, and jump rope. Additionally, she loved to dance. “She always danced her shoes off and constantly needed new ones,” says my aunt, Vanessa Martin. Another distinct activity that my grandmother loved to do was play with grass dolls that she crafted on her own. “We would collect grass and roots, we knew the right ones to pick. We would curl their hair, and we made them ourselves!” she said excitedly. The beginning of my grandmother’s life is clear and distinct as it’s written, but within her own mind, these memories have become increasingly unclear and ambiguous.
Dementia is a word used to describe a wide range of signs and symptoms that refer to a decline in memory or thinking that makes daily life more challenging or difficult. One of the largest misconceptions about dementia is that it refers to a specific disease. In reality, it is used as a generalization for anything that reduces someone’s ability to function on normal basis. The most common or well known type of dementia is known as Alzheimer’s, which accounts for 60-80% of all known cases. Following Alzheimer’s, vascular dementia, which often occurs after a stroke, is the second most common type. Though these are the most frequent forms of dementia, dementia itself has the potential to manifest itself in other ways as well.
As far as I can remember, visiting family in New York has been a constant activity of comfort and joy for not only myself but my family as well. There, we see many relatives, but almost always my aunt, grandfather, and grandmother. While in New York, we always stay in Soundview within the Bronx at my grandmother’s house, a place that constantly remains clean, orderly, and vibrant, always brimming with relatives and acquaintances. The house is constructed with three floors—the top two belonging to my grandmother, and the bottom floor she rents out to a tenant. Just simply going outside on the porch, you will see a pizza shop and at least three grocery or general stores within immediate walking distance. The street is never empty outside her house and is constantly active with cars honking, people walking, or sirens blaring, adding to the city atmosphere. The only green to be seen is my grandmother’s small yard, about six feet wide and 12 feet long, an abnormal sight to be seen in the sprawling city.
As a child, I remember my grandmother having an aura of power and respect that you could simply feel when she walked in the room. She loved to laugh and make jokes at any opportunity, but would not hesitate to correct anyone if she saw something out of order, or offer a sliver of advice at any opportunity. Though my grandmother is small in stature, she is anything but in her personality and character. Exuding a strong, independent presence, she is someone that I not only love, but look up to and respect as well. She has always been the kind of person to give to others before thinking of herself. “Your grandmother was always one to give,” says my father Lazerek Perry, “there have been numerous examples where she gave to those who didn’t have or the less fortunate—almost everybody she came in contact with. Whether it be money, clothes, or anything of the sort. She was always someone who was a giver, that’s her best quality.” Growing up, I experienced the willingness of my grandmother to give almost monthly. My clothing has always been supplemented with the newest, eye-catching items from the fashion mecca that is New York. Periodically, I would receive $20 in the mail entitled to “sweetie boy.” This image of my grandma was indisputable and could never be changed or challenged in my mind. Entering my freshman year in high school, the difference in schedule, homework, and sports were not the only shifts that occurred within my life. During the school year, my mom told me that my grandmother had developed dementia, and she briefly explained what exactly it entailed. Upon hearing the information, the gravity and reality of what my grandmother was dealing with did not fully resonate within me until she visited us later that school year.
The fluid and normal functions of our body and mind are made possible by the brain, our body’s most complex organ. To provide order to the countless amount of activities that the brain has to control, it assigns specific attributes to differing regions. Some examples include: the Frontal Lobe, which is associated with reasoning, movement, and problem solving, the Temporal Lobe, which, is associated with memory and speech, and the Occipital Lobe, associated with visual processing.
The causes of the many forms of dementia originate from the damage or deterioration of your brain cells. This results in increased challenges of communication and interaction between cells that constitute and manage the crucial areas of your brain needed for daily tasks. As a result, the damaged cells cannot perform their jobs, and the function of the individual regresses in the same manner as the cells themselves.
After my grandmother had arrived in Virginia early one morning during the fall of my sophomore year, I had not had the chance to see her yet. It was a rare occasion for her to travel to Virginia to visit, and as the day neared its end, my excitement grew. The instant the clock struck 3:20, the bell sounded, and I rushed out of the door. I ran to the car, eager to see my her. I flung open the passenger side door with a grin on my face, and said excitedly, “Hey grandma!…” However, as soon as I laid my eyes upon her, my excitement immediately gave way to shock and surprise. My grandmother’s face, once full and brimming with attitude and emotion, was now thin and bony, as if there was something absent that had been present before. I quickly swallowed the rest of my words and sat down in the back of the car. I retreated into my thoughts. I was both frightened and terrified. Questions bounced around my head: “How am I going to react? What do I say? Is she still the same grandma?” As if reading my mind, she turned around, with the same smile, full of love and affection, and said “Hey, sweetie boy.” Hearing the familiar phrase brought me a form a relief, and the panicked feeling that had begun rising in my chest began to slowly subside.
Her planned stay for a week in Richmond was cut short. Thinking that a change of environment and being constantly surrounded by family would be a welcome remedy for my grandmother, we were mistaken. Throughout the week, she became sick and more confused and unresponsive. At one point, she walked outside onto our front porch and asked if she was near White Plains Road, a street near her house in New York, almost eight hours away. Seeing the utter confusion and uncertainty on my grandmother’s face pierced through the relief and comfort I once had. It was a complete contrast to the confident and resolute person I had known in the past. It was as if something was taking away a vital piece of my grandmother, and she had no control over it. The change in her normal routine caused too much stress upon her, and as a result she needed to leave earlier than expected. With her departure back to New York, she left questions and uncertainty in her wake. How were we going to fight this?
The differing types of dementia are aptly named after the areas of the brain that are affected. Regarding Alzheimer’s, a high level of certain proteins inside and outside brain cells makes it harder for them to remain healthy and communicate with one another. It is often the cells within the Hippocampus, the center of learning and memory in the brain, that are damaged first. It is this fact that explains why memory loss is one of the first symptoms noticed in dementia patients. However, it is not the only symptom that is included within dementia. Delusions, behavioral differences, paranoia, depression, anxiety, and changes in sleep or appetite are just a few of the signs of dementia. The concept of dementia and its effects were once completely foreign to me, but my grandmother’s recent diagnosis has affected not only myself, but my family as well in more ways than I could have fathomed.
In her current state, my grandmother’s diagnosis is simply “dementia” and has not been narrowed down or focused to a specific type. While physicians and doctors can always determine if an individual has dementia, there is no one test to officially show the exact cause of dementia. Specifically regarding Alzheimer’s, diagnosis is difficult, and requires careful and comprehensive medical examination, including a thorough medical history, mental status testing, a physical and neurological exam, as well as blood tests and brain imagery. The only definitive test for Alzheimer’s can occur only after death, when doctors have the ability examine the brain tissue and identify areas of plaque buildup and decay, officially arriving at a decision.
The most challenging and severe aspects of dementia are not only the effects that are shown through the patient, but the emotional effects that it has upon their family members. My aunt and my grandmother’s first child, Vanessa Martin, has had to undertake and experience the progression of my grandmother’s dementia firsthand. She moved from her own home and family in Queens to live full time with my grandmother in her Bronx home in order to provide constant support and aid, a sacrifice that is admirable. When dementia first started to become apparent, my aunt was not exactly sure what was occurring. “With me, it was the phone calls,” says Vanessa, “There was a lot of repeating… yet dementia never occurred to me.” After talking to my mother about the increasing amount of differences that my grandmother began exhibiting, they decided to go to the doctor, and dementia became a reality. “In the beginning it was hard,” says my aunt, “I cried a lot. It affected me because she would accuse me of not loving her, and that no one cared about her.” The hardest part for my Aunt Vanessa to emotionally cope with was, “seeing her change, her declining…” she says. “However, after coming to terms with the condition, and realizing that what was happening was completely out of her control, she came to understand what she was going through. I realized that I had to put on tough skin, I would let her take me places that were not true.” The biggest change for my aunt is seeing my grandmother’s dependence on other’s help. “She is still able to do for herself,” elaborates Vanessa, “but she needs someone with her constantly to provide for her needs. In a way, I have to do everything around mommy; it is like having a child.” Yet despite these challenges, my aunt remains positive and caring. “She is still able to give good advice, and always brings laughter!” says my aunt with a chuckle, “One thing that she hasn’t lost is her appetite, her new favorite food is Icees now!”
“At this stage, she’s still doing a lot for herself, and she’s still capable if you lead her in the right direction,” says my Aunt Vanessa proudly. A fact that keeps my aunt grounded, and allows her to retain a connection with my grandmother, is her knowledge that my grandmother has not lost her sense of her children. “She always calls me her baby,” my Aunt Vanessa says with a warm smile.
In collaboration with her sister, my mother Jocellyn Perry supports my grandmother with all the effort and vigor that she can muster from eight hours away in Virginia. She makes sure to call my grandmother at least once a day, and I constantly hear my mom on the phone, taking care of my grandmother’s bills, doctor’s appointments, home care, as well as medications. Often times I am in awe; my mother sacrifices and puts forth so much of her time toward supporting my grandmother, it is like she is there to offer a guiding hand every step of the way. My mom first noticed signs of dementia in my grandmother during one of her planned trips to visit us in Virginia. “We had been planning for a month for her to visit, and when we traveled to New York to bring her here, she clearly was not organized or prepared to make the trip. It was a signal. I did not know it then, but I know it now,” says Perry. Being one of my grandmother’s primary and dedicated supporters, she is one of the few individuals to truly experience the taxing role that dementia has assumed in the situation. “It’s exhausting,” says my mother, “You’re doing everything you can to keep your family members safe, and at times they don’t cooperate.” Adding to the challenges, my grandmother experiences a high level of paranoia, as well a decline in her “retention of short term memory,” which my mother observed as a distinct effect of dementia. “What is challenging is that she wants to be independent, live independent, and make independent choices,” explains Perry, “most times she is resistant to help because she does not realize that her mental capacity to make decisions is not where it used to be.” The hardest part for my mother is, “trying to maintain some kind of normalcy,” she states, “and trying to treat them as the same person they were prior to the impact of the diagnosis.” Throughout these challenges and tribulations, my mother still finds room for positivity, which she believes originates from our family’s commitment to religion. “She still has her faith, it is still very relevant to her,” says Perry. “It is very obvious that my faith and her faith in the Lord Jesus Christ is the glue in the whole thing.” Furthermore, my mom says that she still has her “spicy personality,” and her “sense of humor.” Her motivation for giving so much effort and aid to my grandmother stems from past events. “My mother took care of her father, she was an awesome role model, and I have every intention of following her example of taking care of her elders with dignity. She took care of her father with dignity, therefore I want to take care of her with dignity.”
After finishing high school and completing two years of college at The College of New Rochelle, my grandmother moved to New York shortly after the birth of my aunt in 1957. Her first home was located at 145th Street and 7th Avenue in Manhattan, before she settled in her second and current one, located on Lafayette Avenue in the Bronx. In both homes, my grandmother inserted herself into the community, establishing herself as a form of support and aid to whoever was around her. Having a very close relationship with God, and growing up in a religious household, she has continued to live a devout Christian life. As a member of the Bronx Community Baptist Church, she served for countless years as the president of the first lady’s ministry, and as both a leader and friend to the larger community. My grandmother continued to serve the church until her health no longer allowed, and in recognition of her service, the church gave her a plaque entitled to “Ma” Ellen Eady, thanking her for all of her service and leadership in her time at the church.
While visiting New York and walking around the neighborhood with my grandmother, I have lost count of the amount of times that someone has walked up to her and greeted her with a hug, wishing her well and asking her how she is doing. Young adults in the neighborhood refer to her as “Ma,” and during my many visits her doorbell is constantly ringing with people coming to check on her well-being. To see how many lives she has touched is both astounding and staggering, and she sets a great example of the kind of person that I aspire to be when I am the same age. One of my most vivid memories of my grandmother helping others was during the summer when I was 13 years old. Staying in New York for the summer, I became very familiar with my grandmother’s neighbors. During my stay, I came to know a middle-aged, Puerto Rican man named Tony, who talked with a heavy accent and acted with a genuine heart. He had been kicked out of his household by his wife and did not have the fortune of keeping a stable job. Seeing this, my grandmother took every opportunity she could to aiding Tony, by paying him to do things around her property such as raking leaves, picking up trash, or shoveling snow. She extended not only money towards Tony, but companionship as well. Many times I would see them on her front porch together, talking and laughing, something that Tony had not been able to do in a long time. Knowing that there are countless others that care for my grandmother other than her family is a form of relief, and whether she is aware of it or not, she has a network of people that are willing to help and care for her as she has done for them in the past.
Dementia is most commonly viewed as only having negative consequences. However, in our case it has brought my family closer together. Rather than calling my grandmother once a week, or maybe twice, I now call her every day or every other day to provide her with a loving voice to be heard and simply someone to talk to. Our trips to New York have become more frequent, and have allowed us to allot more time to seeing my grandmother than we have in the past. Because of the crippling nature of dementia, each member of my family has bonded together and become more open and supportive of one another. Rather than drive us apart and sadden us, my grandmother’s dementia has unified us so that we may combat it with even greater vigor. Even in her current state, my grandmother is still bringing people together and leading them forward. I like to believe that she is fighting dementia in her own way, and that she will never completely yield herself to it. My aunt said it perfectly, “Subconsciously she is a fighter, and deep down I know that she is fighting this.”
Since the beginning of my grandmother’s experience with dementia, she has never forgotten my nor my sister’s names. She always calls me “sweetie boy,” and my sister “sweetie girl.” The simple fact that she has never forgotten us speaks volumes to the love and affection that she harbors for us. With this in mind, I know that my grandmother will never be completely gone, and that at this stage she still has a sense of herself and who she is. Though she may be going through a condition that is deemed both “horrifying” and “incurable,” I know that she will never stop fighting, and she knows that we won’t either.
I love you grandma,
From, Sweetie Boy
All photos are provided by Excellence Perry unless specifically stated otherwise.