The Weight She Carries: Support For The Caregiver

There is a couple I know where the wife is so fed up about losing her sense of identity, losing her sense of joy, and, perhaps most importantly, constantly living in a state of fear, that she threatens to leave the marriage every few weeks. She loves her husband, but she hates her life. And I cannot say that I blame her. After all, she has been forced into the role of caregiver to an advanced cancer patient.

It has turned her into a tightly-wound ball of worry that unravels periodically into bursts of rage. But she is more scared than angry, or at least she is more angry at the bubble of fear surrounding her than she is angry at her husband.

A taxing job

Being a caregiver to a cancer patient can be a taxing job. Throw in the words "metastatic," "inoperable," or "terminal," and you have the makings for a hearty stew. There is no neat way to clean up the mess in this kitchen. What often happens, and is little discussed, is that the caregiver, the one left holding the simmering pot in one hand and trying to wipe up all the splatter with the other, begins to assimilate the recipe she is trying to control. But it cannot be controlled, because this is a stew that cooks itself.

Looking for signs

What I watched play out was this: the cancer patient dutifully went through treatment. There were ups and downs, but little choice in the matter. Quietly, perhaps a bit sadly, he accepted that his life had changed and lost his anger along with some of his passion. He rose to occasions when he could and sometimes he locked himself away just to be quiet.

He mostly stopped talking about his illness and tried to ignore it while getting on with whatever parts of life were manageable. And his wife took on more and more responsibilities, as caregivers often do. She relied on him less and studied him more, looking for signs -- indications of anything.

And outside of her husband, she looked for signs, too. In herself, in her children, her extended family, there were red lights going off, sirens blaring, all arrows pointing to one obvious conclusion: cancer. Cancer was everywhere, in every thought, in every new pain or swelling or stiffness. There was no escaping it. Cancer enveloped her life.

Pretending everything is normal

But she bottled it up. She knew it was irrational. She pretended that everything was normal. Yet there was no escaping the reminders. Cancer is everywhere.

Online, it is easy to type in a few symptoms and get led down the rabbit hole into Cancer Land. After all, there are no shortage of indications that cancer might be at play -- even if the odds are heavily against it. That does not matter, however, when cancer is all you can see, when it is on your mind 24 hours a day.

Caregivers needs support, too

There is a heavy toll placed on caregivers, and not all of them are able to pay it easily. Even with the best of intentions, if they are not able to get the support they need at home and equally outside the home, they become victims of the disease as assuredly as the patient. Falling into depression, dealing with stress or anxiety, and generally just being able to cope are all issues for which the caregiver needs support.

While everyone rallies around the patient, as they should, it is important to realize that patients and caregivers are all in this together. The issues they face might be physically different, but the emotional needs are surprisingly similar. And in some ways, the weight the caregiver must bear is the heaviest weight of all.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.