There’s a particular kind of exhaustion that accompanies caregiving: one that begins in the marrow and settles in your heart. If you are reading this as one who has been a companion to a loved one in facing cancer, you know of what I speak. You know the burden of hospital corridors at 3 a.m., the tenuous choreography of medication and appointments, and what it feels like when your needs suddenly fizzle into oblivion as you concentrate on theirs.
Let me tell you something you may not hear often enough: What you are doing is more important than you can ever imagine.
The Unsung Heroes of the Journey
When we discuss cancer, we naturally think of the one who has been given the diagnosis, for that is what it is about. And rightly so—about their courage, their fight, their ability to take the blow and get up and go on. But there is another saga running parallel to theirs, with its fullness of meaning: yours. The caregiver. The one who shows up, the one who remains there when all is going to pot.
In fact, when you consider it, to be a caregiver is perhaps the finest gift any human being can give to another. You reach out to them with not a care about your welfare, but with the most complete concentration upon the job in hand—the practical one certainly, but also upon the invisible work of keeping hope alive, of being an unshaken lighthouse when the fog sets in thick and disorienting.
Note that it is you who is the most important part of recovering health. Not the medical treatment, not the drugs, not even the skilled hands of surgeons, although these are significant. You are the most essential source of nourishment and sustenance there is. Just the fact that you are present makes the day seem brighter. There is a caring on your part that is difficult to define, but it is nevertheless felt at all moments of apparent comfort and caring, near to one’s heart, in every reassuring touch, every time you say, “We will pull through,” and really mean it.
When terror reigns
There are times in the cancer journey when there appears to be no way of getting through by oneself. Times when the patient is bewildered and unguided. It is then that your soothing reassurances have their greatest value, even when perhaps you are frightened yourselves.
I have in my mind my first big operation so distinctly that time has not dimmed the recollection. The bone marrow cancer had eaten into the head of the right femur, and I had to have a titanium rod inserted into it to avoid a disastrous fracture of the femur. I had never had anything so big to confront before. The opening of my body, the insertion of metal, the changing of the anatomical structure—it was terrifying in a way I could not express.
I was nearly wild with self-dread and apprehension. The “what if” fancies kept circling in the way that vultures do. What if an injury came? What if I could not walk again the same way? Was this, then, only a beginning, a precursor to the loss of other members that I should have loved in the past or present?
But there you were.
You were there when I was in the twilight of fear and apprehension incident to the impending operation and told me that I should be all right. You suggested I think about how much safer things would be after the surgery—not dismissing my fear but gently redirecting my focus to the purposes of the pain. Your comments came to me precisely when I needed them, as if they fell upon me from a great distance at a magical hour.
It was that conversation that gave me the strength to confront the surgery. More than that, it became a turning point for all that lay ahead during the years to follow. Because of your allegiance, I dared to go forward. Not the absence of fear but the ability to go ahead despite it.
That is the part that the nurse plays. You help us rid ourselves of fear—to rid us of the worry lest we should become paralyzed.
Measuring Success of the Journey by the Day
Here is a thing I have learned, which I will share with you. Large accomplishments and perfect outcomes are not the indicators of this journey’s success. It is measured day by day. Sometimes even hour by hour. Sometimes breath by breath.
Have you reached today? Have you fed your loved one something wholesome? Have you sat quietly together when there were no words? Have you laughed at something small and ridiculous? Then today has been a success.
There is no place for regret in looking backward for the things you could not help—appointments that did not turn out as expected, times you felt you were not enough. You are enough. Always enough.
Reaching Out for Tomorrow
What is one of the hardest things about the cancer experience? That even when the loved one has a chance to get well, the future feels uncertain and dangerous. But one of the gifts the caregiver brings to the experience is to help the patient look ahead towards a future of good health, or at least a future where they are comfortable and happy, surrounded by love.
One does this not by promising things that can’t be guaranteed, but by staying in the present. By planning things—a few at first, perhaps. By talking about the family dinner next week, by planting bulbs to encourage attention to spring, or by writing the birthdays on the calendar. These small memories that encourage reflection on the future are of great importance.
Having a Circle of Friends
No caregiver can be an island, although when it is 2 A.M. and everyone is asleep and you are attempting to handle a crisis by yourself, it may feel that way. The need for support, friends, and family exists for the caregiver, also. You require your circle of care!
Allow others to help you. Allow them to bring in meals. Allow them to sit with your loved one while you take a walk. Allow them to listen to you when you want to talk about how tremendous the load you are carrying is. To accept help is not weakness, but wisdom. This is the way the course is maintained without complete burnout.
The same support you so generously offer needs to begin flowing back to you. You cannot give from an empty cup, as the saying goes. You may try anyway. Furthermore, you are better when provided care.
Perseverance.
A day will come when you will want to give up. When fear comes creeping back in. When it will seem to tire out its last gasp from its depth. When you doubt that anything you are doing is doing any good whatsoever.
On those days, I want you to remember this: it is. Everything you do helps.
Your ability to persist in going ahead without a qualm or reconsideration—or rather, your ability to persist in going ahead even when you are choking in the reexamination of what you are doing—this is a remarkable thing. You do not have to be fearless. You only need to keep coming to the front.
Finding the Light in the Darkness.
Here is a truth that may sound strange: even amid uncertainty, even on the hardest days in this journey, there are bright moments. Seeing the brighter things of life does not deny the darkness, but it does refuse to see the darkness only.
It is the joy of laughing at a silly play together; it is glorious in the routine that has become recognized between you. It is in the joy of that splendid afternoon light that floods across a room, from the hands clasped; it is in the soft answer “thank you,” which contains a world of significance.
These things do not take away the hard things, but they serve to remind us why we ought to persist in wanting to help, care, and love even firmly against fear.
A Message of Gratitude and Hope.
If you are the reader of this as a caregiver, I want you to know this—as a person, you are seen. Your sacrifice, your love, and your faith are seen, and you are deeply appreciated in all you do, even though it may never be expressed. The person you are caring for may always be lacking the energy or the words that would make it possible for them to tell you what you are to them. Believe me when I say this: you are the anchor for them. You are the haven for them. You are proof that they are not alone in this fight.
Go on, dear caregiver. Go on, attending to the wishes of those you assist. Go on supplying that help that is always sure and unflinchingly certain; that makes a great deal of difference. Not because it is easy to do, but because it is only love that is infrequently easy, and you are exemplifying what the process is in its most beautiful and unselfish manner.
Your presence is a gift. Your care is transformative. Your love is the medicine that no prescription can procure.
And when this moment in events has hit a close, no matter whether it be peace or boding or something in between that signals the conclusion of another chapter in the event, it will be known by all, including those who were greatly surprised.
You have given all that you have in the give-and-take of the drama. You have kept your pledge in love. That you were the person to the end that was needed. Your love has made their days in the fighting of this battle better, even brighter, and the weariness that serves to hold the harder boundaries easier to bear.
Thanks go to you for being that person. Thanks to you for being the caregiver. Thanks to you for being the immeasurable candy or potent life-giving seed that is called love, which will never be forgotten.
