On the first day of our meeting in July 2021, Lisa and her father enjoy a dinner out. Israel, true to his personality, entertains for the camera.  Currently, only 14% of middle-income seniors reside outside the home in a community setting (assisted/independent living or nursing home facility). Among those that remain at home, one in four require assistance that is often provided by a family member.

My parents met in New York City when they were in their mid 20’s. Both Puerto Rican, they sought solace in each other during a time when being a minority was not something to be celebrated. They married one year later. By the time I was two, they were divorced for the first time. They would later re-marry when I was 8 years old, and divorce again before my 12th birthday.

Recently, my mother told me that my father never wanted children and if it wasn’t for him pressuring her to have an abortion, I would have an older brother. “He should be grateful for all you’re doing for him”, she said.

Lisa, standing in front of her childhood mirror, prepares for an afternoon of medical appointments and providing at-home care for her father. According to Pew Research data from 2012-2017, about 12% of the US population with at least one child of their own under the age of 18 is also providing unpaid adult care to a relative, friend, or neighbor.

As we sit waiting for yet another doctor's appointment, I pull out my camera. Although my father initially agreed to the project when I approached him, he was concerned about appearing vulnerable or frail. He said to me once, "You can't make me look bad." His version of collaboration often involved him giving me the finger whenever I turned the camera toward him.

My mother and father couldn’t be more opposite. My mother, a former accountant, spends much of her life researching and planning, without doing much living. My father spent all of his life living, and zero of his life planning, especially for his elder years. He has no retirement accounts, no life insurance, nothing laid out that would assist with his passing. Years ago, before my parents were estranged, my mother forced him to create a will, so I would at least have some idea of his wishes. Now that the end is near for him, I’ve taken on the responsibility of figuring out what happens after someone dies. Do you know? Because I had no idea.

Israel is insistent on retaining as much independence as possible. While his stubbornness can frustrate Lisa, she understands maintaining his sense of self is important to her father. Caregiving at one time might have only meant helping with activities of daily living, but now it can include medication management, dealing with insurance payers, technical support for electronic equipment and medical devices, coordinating care across systems, and much more.

My father was a rough and tumble father. We would wrestle and carry on, while my mother watched from the sidelines. He was this big strong man, who I loved and feared simultaneously. He was an athlete, playing tennis and soccer in his younger days until a knee injury sidelined him almost permanently. It was that knee injury that started him on a path of defeat, dealing with countless surgeries and pain, never truly getting back to the active lifestyle he adored.

Once the cancer arrived, that seemed to be the end of his hope, no longer talking about 'one day' getting back to the courts. As he started to lose weight and shrink down to half the size of who he once was, he turned his frustration to me, endlessly comparing my weight and figure to his newfound "thinness". While I brushed the pointed barbs off as mean-spiritedness, ultimately I think he was jealous, because I was a constant reminder of the life he once held. 

Waiting. Life with a terminal disease is all about waiting - waiting for doctors, waiting for tests, waiting for prescriptions, waiting for death. We'd pass the time by making jokes about which program we'd see on the TV in the doctor's office waiting room - either Law & Order or HGTV. On this day it was HGTV; I won the bet. But really, there was never any winning… just more waiting. 

The ‘larger than life’ figure that was once my father has almost vanished. Even now, in his extremely frail state, he still attempts to throw his weight around, barking out commands that he expects others to comply with immediately. However, in the quiet moments, the moments in which the powerlessness of his situation takes over, I see his fear. I see his understanding that regardless of who he yells at, he knows there’s nothing he can do to stop the progression of his disease. And in those moments, he becomes a shell of his former self.

At what could be the final appointment with Israel's oncologist, the pair jokingly dance on their way inside. After the appointment, Israel seems visibly irritated. His doctor said, ” We will always be a part of your cancer care team," just before transferring his files over to hospice. This same doctor neglected to send in his latest prescriptions to help with sleep and manage pain before the close of business - something Lisa wouldn't learn until after multiple visits to the pharmacy.

My childhood best friend lived across the street from me all throughout grade school. We used to sit on the electrical transformer box for hours, giggling about boys and talking about the future lives we would live. Never in those conversations did we discuss taking care of our parents when they were older. Never did we consider the mental or emotional strain that would come with “growing up”.

Now I sit on the box alone, as there is no longer a childhood best friend across the street. Now there is no one, just me, to contemplate what the future holds.

In-home, 24 hour care will cost approximately $3,000 per week, and according to Israel's oncologist he could need that in less than a month if things progress as they are. A sense of helplessness abounds. Lisa cannot afford that kind of care for her dad, but she stands to risk losing almost just as much in income by staying with him in GA.

Needing to take the edge off of an emotionally wrought day, Lisa heads to a nearby bowling alley for drinks and friendly competition. Multiple studies have shown that caregivers are at greater risk of depression and mental health issues when compared to non-caregivers (Mudrazija & Johnson, 2020). Caregivers are often left financially, emotionally, and physically depleted, and socially isolated.

The time to move Dad into an assisted living facility has arrived. He resisted, adamant about avoiding a nursing home, dismissing it as a place for "old people." I explained that the constant travel was unsustainable, leaving no alternative. He made me feel guilty, apologizing for being a "burden." What he didn't grasp was that the burden was just beginning - the cost of care required seeking financial support from my mother, his estranged ex-wife. Our family couldn't shoulder it alone, and there was no one else to turn to. The accumulating pressure and guilt left me feeling trapped in a prison of my own making.

Hospice agencies primarily serve in an advisory role and from a distance, even in the final intense days when family caregivers are dealing with typical end-of-life symptoms. More than 90% of hospice care patients receive their care in home. This means that family members are left to manage most of their loved ones' needs with little training, or must cover the added expenses of round-the-clock nursing care. 

Lisa’s hospice provider helped her locate a facility that would provide Israel with the 24-hr care and supervision he needed. This monthly expense is not covered by Medicaid, and costs between $4,000 to $9,000 per month for an average facility. 

On the morning of January 12th, Dad's hospice nurse called to inform me that his blood pressure had dropped to 60/40 and he was unresponsive. She wanted to administer morphine for comfort, asking if I wanted to be present. I said to go ahead, I would be right there.

Upon arriving, I found Dad with his eyes open but unfocused. The sound of the death rattle filled the room. Bursting into tears, I questioned if I could handle being here for his final moments. Ultimately I knew would never leave him until it was time.

I took his hand and spoke to him, urging him to let go. My best friend joined me for support. Amid tears and jokes, we reassured Dad, expressing love and readiness for him to be at peace. Running out of words, I sang the Spanish lullaby he used to sing to me from my childhood. On the third time through, Dad took a deep breath, and on the exhale, he was gone.

I sat next to my lifeless father and looked at him. I held his hand, not wanting to let go. It was at that moment that I knew my final photo with him would be of our hands. A hand that had held mine throughout my whole life, either physically or emotionally. The hand of someone who loved me more than life itself, even if he didn’t always know how to express it.

I took the photo of my hand holding his and said the words, “Time of death, 12:20pm”. I kissed him on his head and left, saying goodbye to my father for the last time.

Israel always wanted Lisa to take his ashes back to Puerto Rico upon his passing. She knew she could never live with herself if she didn't fulfill her promise to him. Two months after his death, she and I landed in Puerto Rico to conclude her journey with him. She resisted, never committing to a location, always feeling the spot "wasn't good enough".

Finally, the last day arrived, and she had no choice - It was time to be done. We drove to a remote beach on the eastern side of the island. She waited until the sunset; until the beach crowds cleared. Wordlessly, she opened the canister she had traveled 3600 miles with and poured its contents into the ocean. The act took no more than 10 seconds. 80 years of life, swept away in an instant.

It's been almost two years since the passing of my father. Life has returned somewhat to normalcy - work, children, family - all of the neglected aspects of my life once again taking center stage. After six months of grappling with grief and depression, I resolved to resume living; bills weren't going to pay themselves, frankly. However, the underbelly of life has shifted. I now grasp its fragility, and superficial aspects lose their former significance. I'm keenly aware that the only legacy I will leave once I pass is my children. Every moment of worry is overshadowed by the awareness that life can change in an instant. It's a weird sense of relief and detachment to live in... I just simply don't care as much.