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.

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.

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.

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.

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-T 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

For months it's felt like I’ve lived my life out of a suitcase. I would get back to CA and the suitcase would sit, sometimes for over a week, before I would take a look inside and decide what to do with the clothes in there. What’s the point, I thought, I’m just going to have to re-pack it anyway in another week. My life slowly began to revolve around my father and these trips. I squeezed in moments of my own life around caring for Dad. His well being and comfortably the #1 priority. Everything else either needed to wait or fall in place when there was time available.

About 34.2 million Americans have provided unpaid care to an adult age 50 or older in the last 12 months. [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.] At $470 billion in 2013, the value of unpaid caregiving exceeded the value of paid home care and total Medicaid spending in the same year, and nearly matched the value of the sales of the world’s largest company, Wal-Mart ($477 billion). [AARP Public Policy Institute. (2015). Valuing the Invaluable: 2015 Update.]

The decision to move Dad into an assisted living facility weighed on me for months and months. I knew it would need to occur at some point, but I wasn’t sure how soon, and how long we would be able to sustain him there financially. Once the decision was made, however, it was an immediate sigh of relief in the sense that I knew he would be taken care of 24/7. And Dad knew too - he said to me when I told him it was time, “Good. I’m ready to go”. It was the first time he’d acknowledge that moving him out of the apartment that he lived in for 14 years was the right decision. This tiny apartment, which became more of a prison than a home in the later months, was all he had known since his retirement. The emptiness I felt seeing the last of his boxes go was real and suffocating. My independent father, who had fought me to the end on providing outside care for him, had given up.

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or the nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. More than 90% of hospice care patients receive their care in their 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 could provide Israel with the 24-hr care and supervision that he needed when she wasn’t able to be in Georgia. This monthly expense is not covered by Medicaid, and can cost between $4,000 to $9,000 per month for an average facility.

Dad’s decline once in the assisted living facility was fast. At first when I called him, he would complain about the food and tell me how much he hated it there. But that quickly turned to silence. In a matter of a couple of weeks, he lost much of his physical abilities and was unable to answer the phone. We moved him on December 21st, 2021, and two weeks later I was flying back to GA because his nurse was telling me his time was near. I immediately felt guilt, that I had moved him in too soon, that it was my fault his health had declined so quickly. A close friend of his said to me that I had timed the move perfectly, that his decline was inevitable. I guess we’ll never know…

Patients in the last hours and days of life may have physical suffering as well as significant emotional, spiritual, and social distress. It’s common for people in their final days to require careful symptom management, and families may need support and coaching as death approaches. Israel’s pain was first managed with morphine until it wasn’t enough to mask the pain he felt from the cancer in his bones. In the final week of his life, he was switched to fentanyl. The drug caused his skin to itch and a severe loss of focus. The once quick-witted, sharp tongued man spent most of his day resting in bed and begging Lisa to help him resolve an unresolvable itch.

Approximately 10% to 15% of bereaved caregivers experience chronic depression and high levels of stress even after the death of their loved one. In a 2003 study published by NIH, 30% of caregivers were at risk for clinical depression 1 year post-death, and 20% experience complicated grief. The most common finding across multiple studies is that pre-bereavement levels of mental distress such as depression and anxiety are predictive of post-bereavement adjustment. A related finding is that high levels of burden, feeling exhausted and overloaded, lack of support, and having competing responsibilities such as work or caring for younger children are all associated with negative post-bereavement outcomes.

The Mundanity of life has set in. I don’t know if it's grief or depression or a combination of the two. All I know is that every day is a struggle to exist. I have no schedule, no “purpose”, other than taking care of my children (kind of) and making sure my dogs are fed. I clean the house occasionally. Sometimes I try and exercise, though those days are rare. Mostly I just sit and stare, pass the time by endlessly playing word games on my phone. I think about photography… it sits in the back of my mind like an anxiety-ridden reminder that I do have a business I need to get back to. I’ve realized that while the journey of my father’s illness the last few years was all-encompassing, it also gave me purpose. I needed to take care of him - #1 priority. Ok, how was I going to do that - #2 priority. #3 - how would I pay for it. These three main bullet points ruled my life for about three years, more or less. Sometimes they would fall down in importance, depending on his overall health, or if items in my own life took precedence. But generally speaking, those bullet points were always there, leading my path forward. Now the “goal” or “objective”, whatever you want to call it, of caring for my father is gone. There is no more finish line to cross. Now I sit on the other side wondering, what’s next? Where do I go from here? How do I go back to a life where my father is not my main focus? What do I do now?