This post includes information about dementia, a disease my grandmother has, as well as how my family has witnessed her grapple with the illness and what she has accomplished in her life and continues to accomplish. This is an intimate piece featuring words from my family.

To age is a privilege, but dementia is not an illness that most people would wish on their enemies. While we all forget pieces of our days, scatter our thoughts, and misremember occurrences, dementia is a disease that robs a person of far greater aspects of their existence until it claims it entirely. Meanwhile, witnessing the slow decline of your loved one while they become entirely dependent on you is a heartbreaking, daunting, and overwhelming reality to face.

At times, it is hard not to consider someone with dementia in the past tense. Though their body remains, their mind can be so far gone that they don’t recognize their surroundings or anyone in them. This might sound like a harsh assessment, but it is more of a bleak reality for those who have borne witness to dementia. Dementia is a fierce foe that no one should have to contend with. However, as my grandmother has shown me, pieces of your essential self can still persevere through illness of any kind.

What Is Dementia?

Dementia is defined by the Alzheimer’s Association as the general term used for the loss of not only memory but also problem-solving and additional thinking abilities. This loss becomes severe enough to impact one’s daily life, and dementia is an umbrella term used for such cognitive losses. While it is most commonly caused by Alzheimer’s, there are other causes of dementia, including but not limited to vascular, Lewy body, and frontotemporal. Dementia can also be mixed and stem from multiple causes.

Dementia is the collective term used for a variety of symptoms that people with diseases such as Alzheimer’s experience. Diseases categorized as “dementia” are often caused by abnormal changes to the brain with symptoms that trigger a noticeable cognitive decline. Dementia affects not only thought processing, but behavior, relationships, and even feelings. Dementia is also tied to the fallacy that standard aging is linked to a significant mental decline. Dementia is not a routine part of aging, as it rather encompasses a specific group of diseases.

What is Lewy body dementia?

According to Alzheimer’s.gov, Lewy body dementia (LBD) is one of the most common causes of dementia that affects over 1 million people in the United States alone. It is a progressive disease, meaning it starts slowly and gets worse over time, and currently has no cure. This brain disorder can cause issues with thinking, mood, movement, and behavior. It can also cause visual hallucinations.

People with an LBD diagnosis live for an average of 5 to 8 years after diagnosis. However, the time from diagnosis to death can range from roughly 2 years to 20. “Lewy bodies” refers to the abnormal clumps of protein (alpha-synuclein) that accumulate in areas of the brain involved in memory, thought, and movement. The build-up of these proteins in neurons and nerve cells causes neurons to improperly function and die, while brain chemicals responsible for transmitting messages between cells are also interrupted.

*Note from the author: I believe my grandmother is tormented by LBD, which can cause her to experience hallucinations.

My Grandmother’s Story

My grandmother, Anna Messineo, is a proud New Yorker from an Italian immigrant family who graduated summa cum laude from Columbia University with a PhD in Early Childhood Development. She is a single mother to my father, Anthony Polini, and worked as a kindergarten teacher while he was a child. My grandmother is also a lifelong artist. Her art career includes teaching art on TV, as well as traveling the world and sampling various art forms. Her bohemian spirit and love of the arts have enabled her to be a lifelong creator who often incorporates her spirituality into her creations. I want to write these things about her before I say that she has dementia.

“She was a bohemian, an educator, a genius IQ.  She pioneered teaching on tv and graduated with top honors from Columbia Teacher’s College. She loved to travel the world and was a very caring and loving person. She was a poster woman for unconditional love.”

Anthony Polini about his mother, Anna Messineo, and the impact she has had on his life. 

My grandmother, Anna Messineo, has expressed herself with art throughout her life. These drawings depict the workings of her mind as she experienced the middle stages of Dementia at age 90. She studied art and practiced throughout her lifetime and has continued to find solace in drawing during her later years.

There is far more to my grandmother’s life than the reality she experiences now. Despite at one point choosing between whether she would eat or my father would, my grandmother went on to accomplish great things and see the world. She traveled to many countries and brought back trinkets ranging from seashells to a boar’s tail to wooden elephants with their trunks raised high for luck. She was published in the Library of Congress and cut the best paper animals for myself and my two siblings. She also sang “Molly Malone” and other lullabies and always came loaded with the most delicious bread New York bakeries had to offer. This is the person we think of when we think of my grandmother.

“Some memories, events, and even scents can linger from childhood to adulthood. For me, the smell of my grandmother’s house and specifically her pantry always remains in my mind. 

It was an earthy odor, like wood mixed with oregano; strong but not overwhelming. Even when she moved houses, the pantry remained the same. More important than the smell was what it meant. It meant I was at grandma’s house. A house where I would be spoiled, loved, and fed from when I was a baby to a grown man.

My grandma always gave me love and attention and never had to be the one to give discipline. I’ll never forget her endless supply of birthday cakes and desserts- some of which I know I will never taste again. It’s sad now, she is but a shell of the strong woman she was, sitting and awaiting death. Yet she lived an incredible life, one that many would gladly take filled with travels, tribulations, and joy. She left her mark on this world and in my life. Even as her dementia progresses, her face still lights up when I walk into her room, as does mine. I love you, grandma.”

My brother, Richard Polini, the clear favorite of our grandmother, Anna Messineo.

Loving Someone With Dementia

My grandmother, who lived such a full life, now has dementia. Because she has always been such a fiery and vivacious person, it has been difficult and at times impossible for her to accept her newfound reality. The decline of her mind has been painful for her to witness in her lucid moments. She would rather believe she is being robbed than face she has misplaced her items. Understandably, this is also very difficult for her loved ones and caretakers to observe as it can complicate caring for her.

My parents, who live a short drive from my grandmother’s memory care home, have done everything in their power to give her comfort in her later years as dementia replaces her once vivacious existence. Though she is no longer able to practice art, she created drawings up until 2022 and ambitiously make prints of her work, selling pieces at an art show in her late 80s alongside a book she wrote and illustrated about her cat.

While it is comforting for me to picture my grandmother with a pencil in her hand from my home 5,000 miles away, I know this isn’t her reality. Nor is it the reality of her caregivers. The truth is that due to the American system, my parents have paid generously out of pocket for my grandmother to have every comfort she can in her 24-hour care facility. But beneath her inspiring spirit is also anger and desperation.

My grandmother, who has achieved great educational and career feats as a single mother from an immigrant family, has resented her mental and physical decline and her dependence on others. This can make it a very emotionally draining experience for her family who tend to her daily, as her mercurial moods can be abrasive to face. It can also be grim to accept that my grandmother no longer remembers her loved ones. However, this doesn’t erase the good memories that have formed. For those who love her, these memories of who she was before the disease is who she always will be.

“From hand-painting Easter cookies to having a hot Italian meal waiting for us after a vacation to creating intricate collages to decorate our house, my grandmother loved best through creation. And I see that same love when her eyes light up and she briefly recognizes me and tries to give me a piece of her artwork, only to not realize I’m in the room just a second later. But even as the dementia progresses, she has never lost her heart and never lost her artistry. And for that, and a million reasons more, I will love her for who she was and is, forever.“

My sister, Alice Matherne, on her evolving relationship with our grandmother, Anna Messineo.

Closing Words On My Grandmother’s Dementia

As I sit today and face my own chronic disease, waiting for my neurosurgeon to call me back, I hope that I can embody my grandmother’s better traits in my outlook even though I am over sixty years her junior. Mainly, I hope that I can continue to be a lifelong creator who finds new means of self-expression throughout my life. Additionally, I admire her fierceness, and how she refuses to accept her fate. These are traits I have observed in her even in her latter years.

My grandmother told me before that she lives on due to her faith. Though I am not religious, I admire how she has a force grounding her. Whether we live for a higher power, for people in our lives, for ourselves, or due to an innate drive to simply continue, I have to respect her determination to persist. My grandmother does not want to go gently into the good night. She is not being granted a kind death, though it is in many ways kinder than the cancer that robbed my other grandmother of her life over a decade ago. (I know this grandmother would have given dearly to continue her life to such old age.)

Through my grandmother’s dementia, I have witnessed strength in not only her but my family who have continued to care for her every day despite her moods. I know that she will continue to be remembered by us in a way that gives her justice, in a way that goes far beyond the disease that will eventually claim her life. And I will consider her fight as I face my own. There is a gentleness in accepting your fate, but I prefer arrogance, blind courage, or hoping in vain for a way to circumvent it if only for minutes, hours, days, or years. Because there is still life to be left between suffering, something my grandmother has shown me.

Continued Reading: Coping with Caregiver Fatigue