The Daughterhood Project (ongoing)
The Daughterhood Project is a photo story of family caregiving. As the only child of divorced parents, I’ve always understood that it would be my responsibility to care for my parents when they reached a certain age. That time has come, and the challenge of caring for an elderly parent is greater than I ever imagined.
My father has terminal cancer. A Puerto Rican man once brimming with arrogance and machismo, my father has now faded to a frail version of himself. We reside on opposite coasts from one another - he in Georgia, I in California. Every few weeks I leave my husband, children, and business behind to travel to Georgia and manage my father’s overall care. When not in Georgia, a team of hired caregivers take my place in whatever capacity my father will allow. The financial, physical, and emotional strain of juggling it all is significant. As a society, we acknowledge that long-term care for our elderly is severely lacking across all platforms. Caregiver support is even less prevalent. And with birth rates continually declining, we will soon live in an upside-down society with more elderly than there are caregivers available. Within the last 5 years, the number of Americans providing unpaid elder care has increased by 10 million. Of the 53 million unpaid caregivers in the United States, over 60% are women - daughters and granddaughters, just like myself. The need for visibility on this topic is now.
This project is being captured in partnership with Florida-based photographer Stephana Ferrell. Together, our images show a complete picture of the realities of caring for an elderly parent without any additional familial support. We know my story is far from a solitary one and will only become more common with the continued retirement of the Baby Boomer generation.
The Daughterhood Project will continue until the passing of my father and the spreading of his ashes in Puerto Rico, his birthplace.
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 father was diagnosed with stage 2 colon cancer and stage 4 renal cancer in October of 2018. I remember him telling me, “Don’t cry. I have lived a good life. If my time is up, I am ok with that.” He was 77 years old.
The comment was meant to bring levity to the situation, but really, only made the circumstances harder to process. With personalities cut from the same cloth, we tend to approach tense and emotional moments with sarcasm and jokes. We’re tough Puerto Ricans, laughing in the face of death and disease. Sadness and fear comes out in the form of impatience and anger. The reality of facing one's mortality is beyond the scope of our genetic toolbox.
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.
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 and her mother, Miriam, go over Israel's will and important documents that need to be completed for his end of life care. Although Miriam and Israel are estranged, he still entrusted her to keep these things at her house and to guide Lisa through it all.
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.
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 close of business - something Lisa wouldn't learn until after multiple visits to the pharmacy.
Waiting. Life with a terminal disease is all about waiting - waiting for doctors, waiting for tests, waiting for prescriptions, waiting for death. Dad and I used to joke about who we were going to see on TV in the waiting rooms - either a young couple on HGTV looking for their dream home, or Ice Cube and company, solving the next horrific crime on Law and Order. On this day it was HGTV. I won the bet. But really, there is never any winning… just more waiting.
Lisa is no stranger to anxiety, and this last visit with her dad has her feeling quite overwhelmed. While she was able to keep her cool in front of her father, she let her body release all that she was feeling as soon as we entered the car. While Lisa might feel alone in this moment, a report released last month by the Raise Family Caregiving Advisory Council reports about 1 in 7 family members are serving as a caregiver at any given time. Lost income due to family caregiving is estimated to be a staggering $522 billion each year.
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. His hands used to envelope mine, and I always knew I was protected when Daddy was around.
Now his hands are smaller, and pale… so pale, so pale, almost see-through like. Long gone are the days of wrestling and monkey business. Now his hands are used for holding a cane or grabbing onto my arm for support. Our roles are reversed now.
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.
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.
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.
Money. It’s the other constant weight in the back of my mind and in the center of my chest. When I’m not thinking about Dad and what lies ahead, I’m thinking about money. It’s the weight that never goes away.
As a self-employed photographer, money doesn’t come in unless I’m working. And that can’t happen unless I’m in California. But I can’t be in California and take care of my father at the same time. And money needs to be made to pay for the trips, the private caregivers, the medicines, the groceries, the bills back home, the everything… The weight of it all is so much that I’ve begun taking anti-anxiety medication to manage the panic that sets in late at night when I’m all alone.
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.
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.
A hospice nurse listens to Israel's lungs during his onboarding meeting. Lisa's next task will be to prepare his apartment for the medical assistive devices being delivered by hospice in the coming days.
All of the competing factors in my life make me feel like I’m in a prison of my own creation. While caring for my father in Georgia, I feel like I can’t escape fast enough to my life back in California. And when I’m in California tending to my family and business, I constantly feel on edge, waiting for the phone call informing me that he’s fallen and now requires even more round-the-clock care. Or even worse, that he has passed, alone, in his apartment. When I finally have alone time with my thoughts, it feels as if the walls around me are caving in, and there’s nothing I can do to stop them.
Lisa kisses her father before leaving. She must head back to California tomorrow for a couple of weeks for the health and support of her own family, and also to work. She will return to Georgia in two weeks time. The hospice nurse warned that his ability to be independent could change quite quickly and he will need 24 hour care in the coming weeks. As of 2021, 44 states have passed the Caregiver Advise, Record, Enable (CARE) Act to help support caregivers, expand Medicaid and keep elderly people at home. Georgia is not one of them.
You know that saying, ‘you can’t see the forest through the trees’? I never quite understood what that meant until now. The details of life are becoming so overwhelming it feels as if a giant forest is growing up around me, and everywhere I look is just a thicket of trees with no path forward. The constant guilt of not doing enough for my father, not doing enough for my family, not doing enough to keep my career afloat - the competing priorities are just too much for one person. Yet here I am, about to embark on the next phase of this journey. Hospice has been called in… it’s only a matter of time now. And yet back to California I go, to work and see my family if only for a brief period of time, before turning around and coming back to Georgia. Now the guilt takes on a different form, one that includes feeling guilty for wanting this phase to move fairly quickly. Who wants their father to die in a swift manner? What kind of monster have I become?