Normally, most people might ask if there's anything they can do to help. In this case, the person proceeded to launch into a long description of her husband's long-time prostate cancer situation, and ruminated about his once-in-awhile pill treatment regimen. At the time, I was spending my days and nights providing physical, emotional, and even mental support for a woman who was very frail as the result of the progression of her cancer.
What do you do when someone "ups" you after inquiring about a loved one's cancer? Walk away. In this case, I learned the hard way that this woman was claiming her husband's cancer as some kind of badge of honor. She was in her glory, suffering alongside him. Guess what...after another five years, her husband's still going strong, still living a great life, without any serious health issues. And she's still playing the cancer card, to make herself seem important. Goes to show you that not all cancer is equal and that cancer survival depends on the type, stage, and treatment options.
It's sad, but true. Many people who have loved ones managing what we might term "highly survivable" cancers often lump themselves into the same group as those of us who are struggling to help our loved ones with progressive cancer. What does this mean? We have two very different kinds of caregivers.
If you are providing physical care to a cancer survivor who is not thriving, especially if the treatment is harsh and the side effects are debilitating, it's important for you to recognize the stress you and your loved one are under and to acknowledge it. This is not a death sentence for your loved one -- far from it. You may be on that roller coaster as a family, riding the ups and downs of cancer management. When you accept the reality, that your loved one is struggling, you can take advantage of a very important caregiver tool -- the chance to decide how your relationship will be defined.
For those of us who have walked in these shoes, we know that having the chance to make these decisions allows us to find peace at a critical time in cancer care. When we see the struggles of our loved ones, when we understand their impact on the family and our extended social circles, we take actions that often times make an enormous difference for all of us.
Not all cancer is equal, so when cancer becomes the greater part of a loved one's life, that is the time to up the family bonds. In the short summer of sunshine and butterflies, we move about easily, finding food abundant and life pleasant. In the long winter of despair, we need warmth, comfort food, and laughter to see us through the dark hours.
Having a woman compare her husband's non-debilitating prostate cancer to my mother's debilitating lung cancer was a real eye-opener. It was hurtful, to boot. I knew I wasn't going to change her opinion or mindset. That was too wrapped up in her personality and her need for attention, both of which existed before her husband's cancer came along. But it did give me a good kick in the fanny that I needed. It made me determined to fit my caregiving to what my mother really needed. More enabled activities to please her through difficult hours. More emphasis on asking her what she needed to do, rather than focusing on my own needs. More determination to make good things happen for her while she had the energy to accomplish things on her "to do" list. Knowing that my sacrifices would soon end enabled me to make greater sacrifices for her while there was still time.
There is honor in helping another person live. It's easier to defer one's own satisfaction for a year when one knows that life is finite, to put goals and plans on hold. We can make better decisions that produce better results and greater rewards by being mindful of reality. We are not waving the white flag of surrender. We are living in the moment and making the moment count. If anything, my mother lived longer because she was able to do what mattered to her, instead of spending her days feeling like a helpless victim. And I was able to get through the trying times by constantly reminding myself that my days as a cancer caregiver would soon end. Like a marathon runner, I learned to pace myself as I ran up the hills and around the curves in the cancer road. I took advantage of the good days to make progress, to find the joy. When you look for something to celebrate, some little snippet of goodness, you will often find it. When you assume there is no light, you will see only the black night of the soul. Choose wisely. What does the heart need, even as the body fails? What does the spirit seek, even as the body fails? When we give a loved one wings to rise above the mortal limitations, we enrich our bonds in amazing ways. This is the time to build lasting memories to remind us that love is a powerful thing.
The fact is, sadly, that for some cancer patients, there is no cure, no magic wand to wipe away this hideous disease. When we are mindful of the level of struggle our loved ones are currently experiencing, we are able to take advantage of the information in ways that can be life-changing. By realizing just how far my mother's health had deteriorated, I was able to understand that the cancer and related complications were progressing. That meant that the hourglass was running out. As a caregiver, I would soon be out of a job. I needed to know that, in order to maximize the support my mother needed and to pace myself, to accommodate my own life.
A cancer caregiver may go through a number of periods of providing care, and that care may be of varying degrees of hands-on involvement. Very often, especially for the newly diagnosed, the treatment itself is overwhelming to the physical body. Our loved ones look like the Walking Dead until the impact of chemotherapy, radiation, and even surgery kicks in. We may go back to our normal lives and forget about cancer until the next scan shows something or a new symptom appears. Then we jump in again and help out until our loved ones are back on their feet again. But if and when there comes a time that the cancer proves too great a foe, we need to accept the reality and maximize what time we have left with our loved ones. We need to take the trips, have the parties, be together in ways that allow our loved ones to embrace the life that is still with us.
Some people think it's best to soldier on, to pretend things are good when they are not. Denial prevents us from embracing the love, from finding the opportunities to live life out loud. When you see the changes in your loved one, when you feel that dread in the pit of your stomach because you can recognize the physical signs, consider this the winter of your loved one's life. Don't run away or hide. Build a mental refuge where the family can gather. Fill it with warmth, laughter, and comfort, with people who love your cancer survivor. Reach out to those who are receptive to your loved one's plight. Ignore those who are not.
What did we find in my mother's last months? The good friends who cared about her kept calling. The fair weather friends fell away. The relatives who understood the importance of sharing the love came calling. The ones who didn't stayed away. The real tears were shed outside my mother's room. The crocodile tears were shed for effect, with a lot of hand-wringing, lamenting the situation in public settings.
When people ask a cancer caregiver what is needed for a loved one whose condition has deteriorated, it's hard to sometimes say. I can tell you what my mother told me. She wanted cards and letters. She wanted to know that, even as she was confined to home, she was not a forgotten prisoner, locked away. Did she still matter to people? Did they think of her? Did they want to share what mattered most, in their hearts, their minds?
When a cancer survivor begins that last descent, it doesn't happen overnight. It happens over time. Months, weeks, and finally days. If a cancer caregiver recognizes the signs when death is still months away, there is time to build some very wonderful memories. If a cancer caregiver only pays attention in the final weeks, there can be a great rush to get so many important things done, it's exhausting. And if a cancer caregiver only wakes up to the reality days before a loved one takes his or her last breath, the result can be devastating for everyone.
My mother benefited from being able to express her worries, her hopes, and even her dreams as her life drew to a close. That enabled us as a family to find ways to comfort her, to encourage her to speak up about what she wanted, for herself and for the family, and even to address the future without her. Many people think that speaking of death is a grim subject that only hastens the end of life. But for many cancer patients, having the opportunity to live the reality means freedom to enjoy the time that is left. Life becomes a great gift, all the sweeter because we know we will soon say farewell, and in the knowing, we have the chance for that one last dance.
