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A Terminal Diagnosis Does Not Terminate Living
Tips for Injecting Living into Dying

By Linda Campanella

 

When my father began our phone conversation with the words, "Are you sitting down?" I knew the news to follow would not be good; but I never in my wildest dreams imagined he would tell me my 73-year-old mother was terminally ill with metastatic lung cancer. I had not even begun to prepare myself for the day I would lose either one of my parents. A lucky gene pool had caused me to believe confidently that both would live well into their nineties. No such luck.

Every day a daughter or son somewhere, or a sister or brother or parent, gets the news that a cherished loved one has been diagnosed with a terminal disease. The shock, accompanied by a ferocious sense of foreboding and a powerful dose of premature grieving, can be overwhelming and paralyzing. Yet we need not be consumed by the depths of despair; and for the ones we love and will lose, it is vital that we climb out of the depths as quickly as possible so they won't fall in themselves.

Two days after getting my father's call, I suddenly had a moment of clarity and an epiphany: my mother's life was going to end sooner than we expected or wanted, but it hadn't ended yet. So I committed myself to helping my mother live, and live joyfully, until I found myself in the position of helping her die.

If you receive the dreaded call, what can you do?

How can you inject living into dying?

How can you let the sunshine break through the menacing cloud overhead?

1. First, reel yourself in from that place of anticipatory grief to which the diagnosis catapulted you. No one has died yet, so stop grieving a loss that hasn't occurred. Rather than anticipating death, we can choose to embrace and enjoy life. The story of my mother's life was still being written, and so there was no need to allow our minds to fast-forward to the story's ending. We were intent upon writing quite a few more chapters.

2. Realize that while there is nothing you can do to keep your parent or loved one from dying, there is much you can do to help him or her keep living. For us, tomorrow was a day to look forward to because of the possibilities and happiness it could bring, rather than a day to dread because it would bring us one day closer to death. Make what time remains a period filled with purpose and passion.

3. Stay in the moment. Don't focus on what lies ahead. It is possible, and good, to crowd out thoughts about dying by injecting acts of living. You can keep thoughts of what's to come at bay by being intentional about savoring every aspect of what you are experiencing while you are experiencing it. And shouldn't every one of us do this every day anyway, whether we know our days are numbered or not?

4. Don't expect miracles, but don't stop believing in what is possible. While the disease will eventually render certain things impossible, focus on all that is still possible. Even though we were subconsciously or privately aware that we might be celebrating certain holidays or milestones together for the last time, we chose to look forward to what came next. And rather than focusing on last times, we opted to find things we could do or enjoy for the first time. For example: a first mother-daughter side-by-side mani-pedi. Unforgettably wonderful!

5. Don't stop planning. My mother and I did not use a calendar to cross off, with relief, days that had been survived. Rather, we used the calendar to record, with anticipation, plans that were being made—appointments, outings, get-togethers, trips—for next week, next month, and even next summer.

6. Have fun. Make fun. Be happy! It is OK to laugh while hearts are breaking; in fact, it's critical. Laughter is good medicine. So laugh—with abandon. Take pictures. Lots of them. We filled two photo albums. Who would ever have imagined how much my mother would do, where she would go, whom she would meet, and how many people she would touch after her diagnosis? Who could ever believe how happy she was that last year? The photos provide evidence...and also many wonderful reminders of life, love, and laughter.

7. Help your parent or loved one retain things that matter most to someone facing death: routines, relationships, a sense of self, and, above all, a sense of dignity. Keeping a calendar, carrying a pocketbook, getting dressed, getting together with friends, shopping for holiday gifts, making the grocery list—little routines like these inject a semblance of normalcy into an existence that feels anything but normal or routine, especially as disease takes its toll. And remember that we feel good when we look good. My mother was never without lipstick or earrings on the days I was with her; we kept our nails polished and we shopped for new clothes for the coming season. Why not?!

8. Gently nudge, but don't push. There will be days, and there will come a point, when certain things just aren't possible or when your parent simply won't feel physically (or mentally) up for what you think she might want to do and enjoy. Although I was intent on helping her find joy in every day, I did not want my mother to be afraid to say "I can't" or "I don't want to." I didn't want her ever to feel as though she was disappointing me or anyone in the family if she succumbed to her fatigue or anything else she struggled to overcome.

9. Allow as much opportunity for your loved one to be doing rather than always being done for or done to. A dying person needs and deserves to be treated and valued as a human being, as a person rather than a patient. The notion of being helpless and a burden to loved ones is as demoralizing and demotivating as anything can be. Whether folding some laundry or putting the tape on Christmas presents that I was wrapping or opening the mail or looking up a phone number or wheeling herself to the refrigerator to pull out a yogurt for herself, it was important for my mother to feel she was still "good for something" and still the lady of the house—her house, even when it seemed overtaken by caregivers.

10. Welcome hospice as a companion and guide on the journey of life as the journey comes to an end. Hospice staff and volunteers are angels on earth. Thanks to them, when we reached the final destination we all—my mother and those she was leaving behind—experienced peace and gratitude we had not imagined possible at such a sorrowful time in our lives.

My mother lived, fully and joyfully, for a year and one day from her diagnosis.

A diagnosis of "terminal" cancer does not terminate living. In reality, each of us has already received a terminal diagnosis; we just don't know how close we are to the finish line. Without denying the reality that someone we love is going to be leaving the party sooner than we expected or want, it is possible to suppress that reality and go about the business of enjoying the party while it lasts. And it might last much longer than you expect. Or it might not, but it can still be a lot of fun.

 

Linda Campanella is a management consultant; her solo practice serves nonprofit organizations of all sizes and missions. In previous stops along her career path, she was a corporate executive in the aerospace industry, a senior administrator at a private college, and an international trade negotiator in the executive branch of the federal government. She is the author of the award-winning memoir When All That's Left of Me Is Love. More information about her book can be found at www.lindacampanella.tateauthor.com.

 

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