Interview with Monica Jorge: On Documenting Alzheimer’s and Dementia Within Her Family

January 29, 2017 - Newington, Connecticut:  My grandmother places a bib on my grandfather and pushes his chair in to prevent him from making a mess while eating a meal, January 29, 2017.  Over the past year, my grandmother, Maria, has stopped eating with her husband at the kitchen table because he has become a messy eater and has occasionally spit on her during meals. Monica Jorge/Alexia Foundation

My grandmother places a bib on my grandfather and pushes his chair in to prevent him from making a mess while eating a meal, January 29, 2017. Over the past year, my grandmother, Maria, has stopped eating with her husband at the kitchen table because he has become a messy eater and has occasionally spit on her during meals. Monica Jorge/Alexia Foundation

This past April, Monica Jorge was awarded the Alexia First Place Student Grant for My Grandfather’s Keeper which intimately documents the sacrifices of senior spouses unprepared for care taking. By focusing on the experience of her own grandmother, Jorge provides an account of how a wife became a nurse and the difficulties that lie in this new life.

In this new interview with Jorge, we discuss what this project means, how she is accomplishing it, and what impact she hopes it will have.

Alexia Foundation: How did you start working on “My Grandfather’s Keeper”?

Monica Jorge: I started this work while I was enrolled in the Visual Journalism and Documentary Practice program at the International Center of Photography in New York. Before working on this I had mostly just dealt with fast-paced news and I wanted to challenge myself and work on something that was more personally involved and investigate relationships within my own family.

I hadn’t decided to photograph my grandparents until after a weekend assignment where I decided to make a quick video on my grandparents’ love story. That was when my grandmother revealed for the first time that their marriage was not what we thought it was.

It was then that I saw her as a woman who sacrificed so much for someone who probably didn’t appreciate her for all she is, who she resents from time to time, and I realized in all of this, she was the one that was suffering most from my grandfather’s illnesses. I started living with them on the weekends with the intention to learn more about their life.

Ramiro Durao stands in the shower in the bathroom of his home in Newington, Connecticut, waiting for his wife to help him, January 29, 2017. Monica Jorge/Alexia Foundation

My grandfather, Ramiro Durao, stands in the shower of his home in Newington, Connecticut, January 29, 2017. He stood while waiting for his wife to place a chair in the center of their cramped bathroom for him to sit down in to get dressed following his morning shower, a routine they have developed. Monica Jorge/Alexia Foundation

Alexia Foundation: Why is this work important?

Monica Jorge: These are issues that can affect any person or family. Not only those that are dealing with Alzheimer’s or dementia but families where care-taking or aging is a constant topic of discussion. It affects families and relationships. There are sacrifices that come along with illness, or aging and marriage, and when one person no longer has memory it becomes very lonely and isolating.

Unfortunately, these people are not a rarity. There are people just like my grandparents who are trying to get through this journey on their own, day by day. Even as a close family member I was unaware of everything that went on behind the scenes.

My grandmother sees this as her duty to her husband and her marriage. My hope is to form a better understanding and work with people on the medical or support side to form solutions that could help to support people like my grandmother in ways that don’t make them feel like they’re giving up or failing by asking for help.

Maria Durao shaves Ramiro Durao's face in the morning in the bathroom of their home in Newington, Connecticut, January 29, 2017. Monica Jorge/Alexia Foundation

My grandmother, Maria, shaves her husband, Ramiro’s, face during a morning routine on January 29, 2017. While he is unable to perform simple tasks, such as shaving his face, Maria is fully capable and in good physical health at 74 years old. In recent years she has compromised on hobbies like jogging and yoga at the senior center in order to care for her husband full time. Monica Jorge/Alexia Foundation

Alexia Foundation: How has it been photographing your family so intimately?

Monica Jorge: It becomes stressful and overwhelming. It is an entirely different dynamic and I felt like it also took a while for my family to really take me seriously while documenting them. My family is an uncomfortable topic for me to begin with and as much as I have always considered us very close, I quickly realized that wasn’t exactly the case with my grandparents. I realized that part of the joy of this project was rediscovering a relationship with them.

My grandmother has been very open with my seeing anything and everything that goes on in their lives but she is still hesitant with opening up about her feelings and how she is emotionally affected – she is a tough cookie and I don’t think she wants me to see her as being weak. I still have a long way to go with breaking down some barriers and pushing this work further but it takes time.

I’ve found it harder to work with family than what I am typically used to with strangers working on daily news assignments but it has helped me grow both as a photographer and a person. With my grandmother, I know the entire situation she is living with is hard on her and I wish I could help her more than I think I am. I have had to take some breaks from photographing them so much or from living with them every weekend just to rest my brain or emotions.

When you commit to documenting your family, every birthday or holiday becomes part of the project. However, my grandfather now loves cameras and sometimes its impossible to avoid him making funny faces at me while I’m photographing- we all laugh about that.

Maria and Ramiro Durao wait for family to arrive at the funeral for Ramiro's brother, Manny, in West Hartford, Connecticut. Monica Jorge/Alexia Foundation

Maria and Ramiro Durao wait for family to arrive at the funeral for Ramiro’s brother, Manny, in West Hartford, Connecticut. Monica Jorge/Alexia Foundation

Alexia Foundation: How has your family responded to your work?

Monica Jorge: I actually think some of my extended family is still unaware of it or unaware of the extent to what I’m doing. Especially since I revealed in a video that my grandfather was unfaithful, I had uncles that did not even want to hear about the reality that my grandmother had shared with me. It’s hard. It is a reality that is breaking perceptions of what we have all believed to be a pretty picture for so many years.

Like I said, my grandmother is a tough and emotionally-strong woman who would not willingly complain about her living situation. She believes she can do it all on her own so it has been quite a reality check to family members to see the isolation or what it really looks like behind closed doors when we’re not visiting or spending time with them during a happy family event.

I have made a few videos with this work which I think provoked the most reaction best described as a sad realization. It has sparked many conversations about plans for the future and ways to be more supportive.

January 29, 2017 - Newington, Connecticut:  My grandfather, Ramiro, falls asleep in his private bedroom, April 2, 2017.

My grandfather, Ramiro, falls asleep in his private bedroom, April 2, 2017.


Alexia Foundation: What is the hardest part about this project?

Monica Jorge: Aside from questioning how it will likely end, working on the project means that I take on a lot of the feelings that my grandparents live with like the isolation. It gets very lonely.

I have also struggled a lot with questioning when to put my camera down and just be a granddaughter and relieve my grandmother of some of the responsibilities. She used to be in amazing health, probably better physical shape than me, and now she’s often overwhelmed with little free time from being a caretaker.

Alexia Foundation: What do you want people to take away from this project?

Monica Jorge: Appreciate your loved ones and offer a helping hand – for some, it may be too hard to ask.

Maria Durao keeps multiple locks on all doors in the home to protect Ramiro from getting injured or trying to go outside, Newington, Connecticut, February 18, 2017.

Maria Durao keeps multiple locks on all doors in the home to protect Ramiro from getting injured or trying to go outside, Newington, Connecticut, February 18, 2017.

Alexia Foundation: What are your plans for My Grandfather’s Keeper? How long will you work on it and what do you intend to do with it?

Monica Jorge: I told myself from the beginning that I would be happy working on this even if it just amounted to a historical document of my family’s experience. I would like to be able to share this with the intent to bring an awareness that this is a very universal concept where caretakers can fly under the radar, especially those in situations like my grandparents who may not fully understand the options that are available to them.

I will photograph my grandparents until I can’t photograph them anymore. It’s hard to predict how the work will evolve based on my grandfather’s health and my grandmother’s decisions to keep doing this on her own or not. I have shared this with other families who have had similar experiences and also people who work in the health industry and I would like to continue doing that.

I have always envisioned a book. Especially for work that is so intimate, I hope that someone who can relate to the experience could find comfort in picking up a book and remembering that they’re not alone in it.

April 3, 3017 - Newington, Connecticut:  My grandparents return from a trip to the grocery store, April 3, 2017.

My grandparents return from a trip to the grocery store, April 3, 2017. It is easier for my grandmother to buy fewer groceries and take him with her, otherwise she must call someone to watch him at home while she makes larger trips to the store.

Alexia Foundation: What did winning the Alexia grant mean to you?

Monica Jorge: When I learned that I would be the recipient of the Alexia student grant I was ecstatic and surprised. I had only been photographing in a serious capacity for about a year and a half and was in the very beginning stages of this work. It was a major boost of motivation and reassurance that the work I was doing meant something to a community outside of my family and that I should continue.

Alexia Foundation: What has the Alexia grant allowed you to do?

Monica Jorge: The Alexia grant opened up many opportunities for me. I was able to travel back to Connecticut more to photograph my grandparents and soon after made the decision to move closer to them. From the beginning I was able to attend a conference at the Miami School of Communication “Latin America: Stories That Drive Change” and I will soon be attending a MediaStorm workshop in New York.

I also have met an entire community of individuals dedicated to working on stories that inspire change. The Alexia Foundation has been consistently supportive and encouraging and I feel very lucky to have their guidance.

January 29, 2017 - Newington, Connecticut:  My grandmother, Maria, waits for my grandfather to stand up from a chair in the center of their cramped bathroom and exit the bathroom on his own during a morning routine on January 29, 2017.  My grandmother insists that he do as much as he physically can.  Certain days he is able to do most on his own but during recent months he has had medical issues which have made it much harder and required more physical assistance from Maria.

January 29, 2017 – Newington, Connecticut: My grandmother, Maria, waits for my grandfather to stand up from a chair in the center of their cramped bathroom and exit the bathroom on his own during a morning routine on January 29, 2017. My grandmother insists that he do as much as he physically can. Certain days he is able to do most on his own but during recent months he has had medical issues which have made it much harder and required more physical assistance from Maria.

Alexia Foundation: Why are you a photographer?

Monica Jorge: I originally graduated with a B.S. in financial accounting. Around the same time, there were a lot of really terrible things going on in the world that raised a lot of questions for me. I decided very quickly that I needed to spend my time on work that I felt was important and could make a difference and so I took a leap of faith and picked up my camera.

I’ve always wanted to bring an awareness to people of how others were living or what others were experiencing. Being a photographer has allowed me the opportunity to meet the most amazing individuals and share stories that are important and worthy of conversation. It is very easy to get trapped in a bubble and shut off the news and I feel a responsibility to say, through photographing, “hey, this matters.”

Comments are closed.