Abstract
I
Our journey to hospice is similar to others'. We have lived on an emotional roller coaster passing through a maze of serious decisions, the outcomes of which differ depending on the health care professional managing the case. The highs of “clear” scans suggesting extended symptom-free time, and the lows of finding new tumors with the reality that we are powerless to stop this disease, can bring cheers, on the one hand, and tears on the other. Decisions follow the results of every test and new symptoms, yet answers for questions are absent from textbooks and journal articles. Health care professionals bring new information and recommendations, recommending a plan of care that rarely includes our preferences. We experience continual reflection on our own values and a reassessment of decisions made and those yet to be made. Over the course of time we have learned that it was the social decisions for which we were less prepared.
Surprising was the overwhelming number of losses experienced along the way. Anticipatory grief is a well-known concept and widely discussed in the literature; however, the focus of such discussions centers on grief associated with future loss. Less frequently discussed or documented are the ongoing losses experienced throughout the journey toward death. It begins the moment of diagnosis and will continue even after the death of my husband.
Like an unexpected earthquake, at the point of diagnosis, our life and the future were shaken and turned to rubble. Suddenly my husband's identity became “cancer patient” and mine “caregiver.” Seemly overnight our roles changed, our schedules changed, and we entered the scary world of oncology. Suddenly we learned how PET scans work, what “FDG uptake values” mean, the names of body parts we did not know existed, names of medications to kill the cancer, and names of medications to overcome the side effects of the toxins killing the cancer. At the same time I was losing the love of my life and watching him slipping through my hands piece by piece.
The price for cancer treatment is high, far more than dollars and cents; put simply, it is the loss of a way of life. The man who had taken care of me, who was always stronger than I, faster than I, healthier than I, began to deteriorate, change, loose ground. It felt as though overnight I was slowing down my pace and doing the lifting. I watched his body go from that of a former marathon runner and long-distance cyclist, a man who looked and acted 10 years younger than his biological age, to someone who was now a senior, whose body had caught up with his age. The hair I had run my fingers through fell out, the energy that surpassed me for 15 years, was now depleted. His feet and fingers were left numb with neuropathy, and he now needed my help to open packages and walk in difficult terrain. His balance became unsteady, and when leaning on me was insufficient, he began to rely on a series of “walking companions” (e.g., canes, hiking poles). In only six months' time my concerns about him moved from worry about him riding his bike alone in the heat for 50 miles to his ability to walk down steps without assistance. Extending his life meant losing my athlete. And this was only the beginning.
Treatments including chemotherapy, surgery, and radiation took their toll. While life was extended, we lost the ability to plan for the future. Knowing the cancer would surface again, but not when, airline and other reservations had to be insured, something we had never done before. We never knew if there would be a Christmas, a next birthday, a graduation. Our future and our ability to think of it shrank to three-month increments, one PET scan to another. Long-term planning, the fun and anticipation of planning for something you want a year in advance, was gone. Our planning was replaced by “if this, then what” thinking. The journey resulted in redefining dreams for the future, and like it or not, PET, CT, MRI scans provided only indicators of what was to come.
Just as his hair returned and I became accustomed to the walking companions and shared short-term plans, the cancer reappeared. We were again faced with decisions, reevaluating our values, and redefining what palliative care meant for us. Living went from months to weeks as I realized that three months was only 12 weeks. Somewhere in the midst of the drama, intimacy changed. The chemicals and procedures used to manage symptoms also have a price, and things that used to work did not any longer. Fatigue, nausea, grief, fear, and the hundred other emotions associated with dealing with terminal disease had an impact on both of our feelings of and ability for intimacy. What had always been a robust physical intimate relationship was now diminished, another loss.
Retirement became an attractive option for my husband. He knew he did not want to spend the end of his life working. As he redirected his energy and identity, I lost a professional colleague. Before he became ill, for more than 16 years, we had worked together in the same organization, the same department. I lost my lunch partner and the chance to stroll down the hall in the middle of the day and see his smile. Our nightly table conversations that had always involved comparison of notes from the day of shared events—these reflections are now a solo event rather than a joint one. Individuals in my professional life changed as new people entered and old ones departed; our common experiences and common support systems dwindled. His days changed from coordinating individuals, events, and managing a universitywide program to managing his day, his disease, and finding a new direction for the rest of his life. My conversation about work changed from comparing notes to reporting on what happened during the day. I lost his professional companionship and his perspective on shared experiences.
Today I look at old pictures and remember how things were. Smiles once carefree and natural are now different. Laughter and humor are different. The twinkles in my husband's eyes, his jumps for joy, his silliness and zest for life are different. Most recently, he quit driving due to the side effects of medications and increased fatigue. I lost my driver and became the driver. He lost his independence and became a passenger. We became dependent on each other. Our world moved from traveling the world to our condo. A lunch date became a trip, today's event. As the journey comes closer to the end, foods are different as swallowing has become difficult, and mealtime traditions are a thing of the past; our home has become a hospital room with beds, shower chairs, and oxygen concentrators. Our time alone, private conversations, become more difficult as the privacy we held for years turns into a public network of much needed social support.
So what is my point in sharing these losses? I don't want to leave the impression that this journey has not had magical moments that otherwise would never have been. Indeed, I have learned a great deal about living in and appreciating every moment. Intimacy has taken new forms, and bucket lists have been accomplished. The overwhelming social support that has been extended to us is immeasurable and affirming. The memories we have created along the way have been priceless and a blessing beyond what could ever have been imagined.
However, I believe it is important that health professionals understand and acknowledge the many losses impacting their patients and caregivers. The world, including that of the members of the health care team, goes on as though nothing has happened. Those of us on the journey are having a different experience. We long for people to acknowledge our losses, recognize that there is a new normal, and most of all validate our emotions and give us permission to mourn. While it does not require years of training, it does require attention to and acknowledgment of its importance.
I think the key to coping with loss is to find a way to reconstitute it, filling the empty space left behind. My husband and I have tried with some success to compensate with travel and bucket lists, teaching others about our journey, and making memories with family. In the midst of impending death and loss, we have found hope in life and the joy in knowing that we have a living legacy in our children and grandchildren. These activities have helped us manage and find new meaning. We have sought to replace some of the million losses with a million memories, moments, and photos.
While we have had some success, I realize that there will be more losses, and for these I will need our health care team to validate my feelings, identify choices, and assist in finding a way forward. Statements like, “I know your life is changing and facing the world without your husband will be difficult” would help keep me from thinking I'm crazy. As changes are made, such as the introduction of oxygen, the health care team can acknowledge the feelings of loss. They can give permission and a “safe” person with whom you can share emotion. They can hear anger and frustration, which is often a taboo to show to the public. Once grief is expressed and validated, the hope for restoration can begin.
Grief is inevitable; it comes as a result of loss, and the more blessings and love we experience, the greater the loss. It is the price for being blessed, for being loved. The solution to a million losses involves a million hugs, a million priceless memories, and two million new dreams. The health care team can assist those of us on this journey by recognizing the losses, validating their importance, and acknowledging the need to mourn. Help us find restoration in the face of loss, peace and meaning in the journey, and hope in what comes next.