Dementia is defined as “a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.” Alzheimer’s is a form of Dementia that 40 years ago only affected about 2 million of the US population. That number today, has increased to about 5.4 million. The disease has no known cure and it worsens over time. People diagnosed with Alzheimer’s live about 8 years after their symptoms become noticeable while the survival ranges from 4 to 20 years, depending on the person’s age and other health conditions. 

Having no cure to this disease and the fact that nothing can be done to reverse the damage it causes, people that are diagnosed with it but are not considered a danger to themselves, others or their community end up living at home with their family members as their caretakers. Alzheimer’s is often an unexpected disease in which the signs of it can be so small, they aren’t perceived by the people surrounding the diagnosed. These facts together contribute to the mentioned family members not having enough time to prepare for the diagnosis and are therefore prematurely thrown into the role of caretaker. A role that can be so time consuming, it actually is the full-time job of official caretakers. 

An abstract from a thesis from the National Center for Biotechnology Information (NCBI) states the following: “Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181916/)

As we can see, being a family caregiver to a person diagnosed with Dementia can cause great stress and negativity but it is often the only choice families may have. Here at Fearlesshe, we wanted to honor National Alzheimer’s awareness month by opening up a space for the family/friends of patients diagnosed with Dementia to express what it is like to live with and love someone with the disease. Here’s what they had to say:

“Watching my grandmother’s health deteriorate from dementia was extremely difficult. I watched a very outgoing, outspoken, honest, grounded, uber southern woman become someone I’ve never known her to be: quiet, unknowing and unsure. And what made the experience even worse was watching my Father react to his mother not recognize him.  I don’t pretend to understand what it must have been like for my grandmother but as someone watching their loved one slowly lose connection with the present world was a quick reality check. It taught me to appreciate the precious moments with loved ones when you can. What I will always hold dear is when I sang gospel songs with her. Those she never forgot. 

Brittany

New Jersey

“Amar a una persona diagnosticada con demencia es tener el cuerpo de alguien que ha abandonado su alma y su ser. Es ver a esa persona a los ojos y encontrar un desierto. Es llevar un monólogo donde había un libro lleno de vida e historias. Es sentirse inútil porque sabes que solo te queda un baúl cerrado, cual nunca más podrás volver a abrir. Amar a una persona demente es odiarla al mismo tiempo por ocasiones. Odiarla porque te hace sentir olvidada. Odiarla porque estando ahí físicamente, te hace sentir abandonada. Odiarla porque aveces te hace sentir odiada. No obstante, amar a una persona demente es estar agradecida por aun tener a esa persona en tu vida, porque sabes que nunca sabrás vivir sin ella, aunque solo tengas su presencia vacía.”

Translation: “Loving a person diagnosed with dementia is like having the body of someone that has abandoned their soul and their being. It is like looking into that person’s eyes and finding a desert. It is like carrying a monologue where there used to be a book full of life and stories. Sometimes it makes you feel useless, when you realize all you have left is a trunk that is shut closed and you’ll never be able to open it again. Loving a person with dementia, is occasionally hating them at the same time. Hating them because they make you feel forgotten, because even though they are there physically, they make you feel abandoned and because sometimes they simply make you feel hated. Still, loving a person with dementia is to be grateful everyday that they are still in your life, because you know you will never be able to live without them, even when all you have left is their empty presence.”

Natasha

Germany

“Anyone familiar with the disease knows the pain that comes with having to lose someone twice. Aside from the inevitable death we all one day will face, those with dementia are lost long before that day comes. I remember when my dad first starting showing signs of the disease. He was diagnosed at 55 years old with frontal-temporal lobe dementia. This particular form of the disease will cause one to lose their ability to speak before they begin to lose their other faculties. My father was an attorney for 36 years, and words were his life. Watching the relentless progression of the disease has been heart-wrenching. It has also brought many endearing and heart-warming moments as well. I have learned to cherish his lucid moments, to accept the person he was, and to love the man who has taken his place. I remember the first time I noticed the disease. We were driving by a dairy farm and my father called it a “milk factory.” I didn’t correct him and inside thought it was one of the cutest things I had ever heard. It was also incredibly sad to realize the disease found its toehold. I’ve learned not to let these moments ruin the memory of the person who was. When the day comes for him to succumb to the disease, there will be a great sense of sadness and also a great sense of relief. Sad for the immense loss of the person who was my father, but relief that the suffering of watching him disappear is over.”

Mckenna

North Carolina

“Loving a family member that is diagnosed with dementia feels like the hardest and longest goodbye. It feels like a twisted misfortune crafted by all of the things that you can’t control. You can’t control it, no matter what. Once someone you love is diagnosed with dementia, you are destined to watch their mind and soul get lost while their physical body continually attempts to catch up. The hardest part is accepting that there is nothing you can do, except make every situation as comfortable, safe and normal as you can; after all, only one of you understands that something is wrong.”

Carolina 

New York

“I feel like I started saying goodbye to her every time I left her side since she was diagnosed with frontal lobe dementia and it progressed. I had to say goodbye to my rock, my pillar, although it was very long and painful, I know deep in my soul that she knows I was by her side to almost the very end. They say there is no stronger bond than that of a mother and her child...Today I believe that love transcends the limitations of time, space and even illness...that there is no power greater than the one felt by the heart of a mother when she hears her children's cries.” 

Sandra

Puerto Rico

As we read through these heartfelt submissions, it was clear that there is one common trend: the painful first good-bye of when a person is diagnosed with Dementia and they begin to decline and the inevitable second good-bye when the person diagnosed passes on. 

Our hearts are standing in solidarity with every person that has been diagnosed with any form of Dementia and their family members and friends, who are the rock and strength for them. We see you, we honor you. 

See you fearless,

Carolina Abreu