Personal Perspective - Antonia’s Story

Yvette Colón, PhD, ACSW, BCD

Living with Grief: Cancer and End-of-Life Care
Eds: Kenneth J. Doka and Amy S. Tucci

© 2009-2010 Hospice Foundation of America
(Available in January)

The hospice doctor and nurse were at my mother’s bedside. I watched them give her information. Lots of it. They asked her to make decisions about medications. They encouraged her to make choices about the kind of care they were offering. I knew from experience that my mother, Antonia, didn’t like making quick decisions about serious issues. I wanted to respect her right to make those decisions for herself and so I held back from interrupting. I sat by the foot of the bed, listening and watching. There was a pause in the conversation. My mother turned slightly away from the doctor and nurse and looked directly at me. She said nothing, but held my gaze for a long time. In that moment I knew that she trusted me completely. I knew she wanted me to help her make decisions about her care. She wanted help and guidance at the end of her life. Gathering all my knowledge as a clinical social worker and all my courage and love as a daughter, I outlined a short-term plan that was acceptable to everyone. Nine days later my mother died.

It had all started just three weeks earlier. I always knew I would be called on to help my parents when they became ill and when they reached the end of their lives. It never occurred to me that I would be both blessed and burdened to be their social worker as well as their daughter. As a long-time clinical social worker, I have spent an entire career working with people with cancer and individuals at the end of their lives. When I was diagnosed with ovarian cancer at the age of 27, I was working in a different field. My parents did not handle my diagnosis or treatment well; having a sick child, even one who was a young adult, was not the natural order of things. I got better and moved on with my life. It was only through my own experience and the profound influence of my support group social worker that I eventually returned to school to become an oncology social worker.  

I remember the day as if it was yesterday. I was in Texas for a conference when I called my mom on a Wednesday to wish her a happy 74th birthday. "Hi, mom, Happy Birthday!” I said. "She replied, "Oh, thank you. I guess I should tell you I'm having surgery on Friday." I was alarmed, "Surgery?? Ma, what's going on? I talk to you all the time and you never mentioned surgery?!" She was so matter of fact, it could have been a comedy routine, but there was nothing funny about it.  She plainly stated, "Oh, you're so busy. I didn't want to bother you." I hung up the phone caught between the feelings that either something very bad was about to happen or that my mom was simply going in the hospital for a routine procedure.

My father faxed me my mother’s medical information to my conference hotel with the hope that I could make some sense of it for him. I soon discovered that mom had been having problems for months experiencing increasing pain and fatigue. She casually chalked it up to an exacerbation of a previous chronic pain condition, but decided she might as well have  a full body scan. The doctor’s report mentioned ascites and peritoneal carcinomatosis. My heart sank. My parents didn’t know what that meant. I did. I immediately left the conference and flew to California to be with them. The diagnosis was grim: pancreatic cancer. There were lots of conversations and consultations – with her surgeon, the pathologist, with other family members who wanted to know what was going on and how to help. At first, the goal was to help mom recover from surgery, go home and possibly have treatment as an outpatient. Mom was most concerned with being able to eat and keep up her strength. Before the week ended, she agreed to TPN - total parenteral nutrition, which would provide all or most of her nutritional requirements intravenously. My father and I spent the next several days with her in the hospital, keeping her company, walking with her and her bag of TPN and watching television together.

It was almost like out of a textbook. One day in the hospital, my mom decided she wanted to go home. She knew she wasn’t making much progress in her treatment of the disease, but she was reluctant to “give up” the TPN. Unfortunately, the TPN would make her care much more difficult outside of the hospital. We requested a second opinion about chemotherapy options from a medical oncologist. As the fates would have it, he happened to be from the very medical center where I had been treated 24 years earlier. He had a sensitive conversation with my mom and was frank about his belief that chemotherapy would not give her any more time. He was able to talk to her about the quality of her life and how he felt the chemotherapy would only erode it. He was kind to give her a prognosis, to help her understand the gravity of her illness. I knew what was coming: a prognosis of six to nine months. Little did we know that it was only going to be less than nine days. My mom courageously decided that she did not want to pursue chemotherapy treatment, “If it’s not going to help me, I don’t want it.” After a week, my mom still was not ready to be discharged. I went home to Maryland to take care of things, promising her I would return.

I called every day. First there was talk of discharge from the hospital, then there was none  – only more confusion about the plan to get mom home. I was in constant contact with my professional network, calling a social work friend who worked at City of Hope to find out the best home care and hospice programs in Los Angeles. I called social work and nursing friends at Johns Hopkins Hospital who then tapped into their oncology colleagues’ collective knowledge to get feedback about my mom’s treatment options, current care, ideas about what to expect and facilitating and translating massive amounts of information for my medically unsophisticated parents. I was rich in resources. I was blessed. All the information and support helped me focus on what my mom needed – her final wish to be respected. She needed to die at home.

Over the phone, my mother began telling me her discharge plans. They changed every day. First she was to go home. Then she was to remain in the hospital. Then she was being considered for a transfer to a transitional care unit. Her doctors would be away, my parents were told, so most community services would be closed for the July 4^th weekend and hospice services would not be able to start until the holiday was over. Nothing could happen before then. The hospital care team members told her and my dad this several times. She was so disappointed. She longed for the familiar sounds and smells of my childhood home tucked away far from this hospital setting.

Not being able to be discharged until after the holiday weekend? That didn’t sound right to me. I was concerned that if my mom went to transitional care, she would never be strong enough to go home. That was all she really wanted. From Maryland, I flew to California again and drove directly to the hospital to have a serious conversation with mom about how she wanted to die. She decided that she would give up the TPN and go home with hospice care. On July 3, we all met early with the hospital’s palliative care nurse to initiate the plan for discharge. After our meeting, a referral was made to hospice and we met with the intake nurse. In the course of their conversation, she asked mom if she’d had a good life. Without hesitation, my mom said, “Oh yes, I’ve been very lucky. I’ve had a wonderful life.” Afterwards, I left the hospital to clean the house and await delivery of a hospital bed and other medical equipment. My mother would be moving into my old room. My mom was discharged from the hospital, went home and received her first visit from the hospice social worker and nurse on the Fourth of July. It was the birthday celebration of our country and the celebration of my mother being able to live out her life as she had always intended – in her home with her family by her side.

She sent my father and me to the cemetery to buy a burial plot in a place where other family members and friends were buried. She said, “When people come to visit me, they can visit them too.” She asked us to return with a price list of other products and services at the funeral home. She wanted to make sure we didn’t spend a lot of money. She outlined exactly what she wanted when the time came: a simple casket, a day of visitation, a Catholic mass and burial. She thoroughly enjoyed the Hispanic baby food we bought so that she could again experience some of the flavors and aromas of her Cuban childhood. She asked for specific visitors –  her brother, nieces, other family members and life-long friends. She wanted them all to make special visits so that she could say goodbye to them. We all worked on a medication chart so that my 72-year-old father would know exactly what to give her at the right times. I went over the plan to call hospice and not 911 in case of an emergency.

My mom and I spent an afternoon with my laptop computer and her favorite CDs, copying the songs she wanted played at her service. We spent another lovely evening sitting together as a family watching the DVD of the 2006 Hospice Foundation of America Teleconference in which I was a panelist; she teased me about the new suit I wore, knowing that I had no interest in fashion and admittedly did not often dress myself without someone else’s fashion advice. She wanted to know who had bought me that snazzy suit. I marveled at her resolve, even while I knew how difficult it really was for her, for me, for all of us.

Once my mother was settled at home I found myself leaving again. I had planned a vacation with my own family and my mom encouraged me to go. “You can always come back and see me after your vacation.” 

My vacation was anything but restful. I was constantly distracted by thoughts of my mom and her courage. I was clear across the country now, in rural Michigan where there was very patchy cell phone service. I tried to talk with her every day, but I couldn’t receive calls as they came in. Instead I would have to leave our lake cabin and drive into town a few times a day to retrieve my messages from the corner of the supermarket parking lot where the cell phone reception was the strongest. I was frantic. One morning the message was from the hospice social worker, expressing alarm at mom’s quick decline. I had a long conversation with her and made quick plans to cut my vacation short and go back. I had only been in Michigan for four days. I was on my way to the local airport to fly to Los Angeles when my cell phone was active again and I listened to my messages. There was a simple one from my father. “Yvette, call home. Mom died this morning.” He cried. That was the longest plane ride of my entire life.

When I got to the house, she was already gone. We drove immediately to the cemetery to buy the casket and make arrangements for the service and funeral. And even though my mom wanted us to be practical, we splurged on one thing we knew she would love: a polished oak casket with brass details.

There were many things I discovered during this short time at the end of my mother’s life, and beyond. She was realistic and humorous and surprisingly strong to the end. She had a strong faith in God, the depth of which I had never realized. She was profoundly appreciative of the care that my father gave her, “I never knew he loved me so much.” When she came home from the hospital to find everything clean and neat and ready, she said to me, “I knew I could count on you.” Two days before she died, she was teaching my cousins all about Medicare and Medigap, so that they’d know how to choose the right coverage when they turned 65.

There were other things I acknowledged as I really looked at all the photos in my childhood home, ones I had only glanced at before and now I really saw them as they were meant to be seen. My parents were beautiful when there were young adults and starting on their life together, they were able to achieve so much with such few resources. They gave me so much without me ever really knowing how much it had cost them. They were terrific as their own individual people with dreams and aspirations. I recalled how much fun it was to cram so many people into small apartments for parties when I was a kid, when my family was so much larger than it is now and everyone was so cool and so happy.        

I have also learned much more about my father since my mother died. When she was alive, I would call and if my dad answered, he’d say something like, “Did your mom tell you we got a new refrigerator? It was a big job to get it into the kitchen. Here she is, she wants to talk to you.” And she and I would talk for an hour or more, about who came to visit, who got married or divorced, where people went on vacation, who changed jobs or got in trouble at school. Now without her, I’ve learned that my dad is crazy about chocolate, that he loves Cirque du Soleil, that he has a great sense of humor and an easy-going personality. And I’ve learned exactly what he wants when it is his time to die.

My mother died exactly one month from her 74th birthday and only 28 days from the surgery that started this journey. The hospice care team, especially my mom’s social worker and primary nurse, were wonderful and the program provided incredible support to both my parents. My father and I take great comfort in knowing that my mom got everything she wanted: to leave the hospital, to die at home, to go quickly and to be pain-free. She was peaceful and comfortable when she died in her sleep.

My ability not only to find resources, but to activate them quickly, and to know and communicate with a far-flung network of oncology colleagues was the result of being a social worker. Everyone returned my calls quickly – the surgeon, the medical oncologist, nurses on the unit, professionals who were asked for favors by my friends. My boss and co-workers were very flexible and supportive. Everyone said we’d have to wait until the holiday was over and everyone was back at work, but I knew there were ways to overcome those barriers. My experience, however, is sadly not the norm for most patients and families, who have to navigate through a complex, unknown healthcare maze. Most do not have a network of health care professionals who can offer advice, recommendations and resources openly and directly. Ultimately, I’ve come to see the burden of being my mother’s social worker as a blessing. And the privilege of being her daughter as a lifetime joy.