THE HIDDEN BURDEN OF BEING A CAREGIVER/PATIENT ADVOCATE

Much has been written about the stress of being a caregiver for a loved one who is living with cancer: that sense of powerlessness as you watch your loved one suffer , the increased responsibility of  taking up the slack of the things he/she can no longer do for themselves (and the dawning realization that the list is going to continue to grow longer), the balancing act of finding food that appeals to a radically changed appetite and a long list of newly intolerable foods, facing the ups and downs on both the physical and emotional planes (your own and those of your loved one)…

What is not talked about is the  gradual realization of just how little your  doctor knows about the detailed manifestations of your disease in your own particular case, and how devastatingly small their arsenal of treatments for the side effects actually is. Worse yet, quite often your doctor is completely unable (or unwilling) to even ascertain if the patient’s particular issues are a result of the treatment or from the disease itself. Often doctors feel that they have done their job by simply giving a medical name to a condition; they are content to leave it at that.

The result: the caregiver finds him/herself in the desperate and mind-boggling position of being responsible, by default, for researching possible diagnoses. For many of us, there is no other choice; our loved one is suffering and no one is stepping up to relieve their pain. As unequipped as we see ourselves to be for this daunting and completely unanticipated new job description, backing down or throwing up  our hands in defeat just isn’t an option.

For example:  at the end of John’s first chemo regimen, he has a sudden attack of completely debilitating vertigo. There were no warning signs, just a sensation that the entire room was spinning wildly and the realization that he was unable to stand or walk at all. Fortunately he was sitting in his wheeled office chair at the time, and I was able to wheel him into the bedroom and slide him into bed. I could see his eyes jerking back and forth like an abacus gone crazy. He was frightened enough to  want to go to the emergency room, and still spinning so badly when we arrived that he had to be wheeled in on a gurney.

After 5 hours in the ER and every test in the book, it was clear that the ER doctor had no idea whatsoever as to the cause of the vertigo. John had speculated right away that this could be related to his chemotherapy, but this possibility was scoffingly dismissed by the doctor. We were told that the diagnosis was BPPV, benign positional paroxymal vertigo, that this was a condition of unknown origin, and that there were no treatment modalities.  When we asked what we should do if this occurred again, the doctor actually told us, “Come back in to the ER.” (!!)  So  John has a condition which is of unknown origin, with no known treatment and the doctor is telling him that he should come back to the ER, where he will expose himself to dozens of other sick people and nurses who have to read a manual to familiarize themselves with how to access his port for blood draws– to be told, once again, that there is nothing they can do for him?

After researching on my own, it seemed clear that the diagnosis of BPPV did not fit John’s symptoms at all. He was a very analytical man; I knew that he was mulling this over and coming to the horrifying conclusion that his cancer had metastasized to this brain– a worst-case scenario for my brilliant husband. Then I came across one obscure bit of information online, a detailed label from one of his chemo drugs which stated that ototoxicity was a known side effect of oxaliplatin. He talked to his ENT doctor about this and was rebuffed again, completely dismissed. A year later, at an appointment for myself (for self-diagnosed BPPV, of all things!), I mentioned my conclusions about John’s vertigo being caused by oxaliplatin to the brilliant young head of our ENT department. His response was immediate: he had no doubt whatsoever–the platinum-based chemo drugs are notorious for ototoxicity and vertigo.

The take-away here is that even though the realization that the very drug that was hoped would destroy his cancer actually created some life-limiting side effects was somewhat horrifying, that conclusion was infinitely preferable to the possibility that cancer had invaded his brain. Not knowing was far worse than the reality– not-knowing actually created a completely new kind of suffering. The version of  “modern medicine” being offered to us just threw up its metaphorical hands and walked away from John’s case in this instance.  My own insistence in finding an answer went a long ways towards relieving John’s mental suffering.

Variations of this realization occurred over and over again as we progressed/regressed in John’s treatment regimen. I never ceased to be amazed and dismayed by how vast my patient advocate job description was in comparison with my original expectations. The research seemed to be unending; new dilemmas were constantly cropping up.What spurred me onwards was the realization that our doctors were at least generally very amenable to my suggestions for alternative drugs; if  I educated myself about the possibilities, they were very open to prescribing whatever I suggested. They did not often think to link side effects to a particular drug, but if I suggested a link, they were frequently quick to agree, as in the case of my deduction that IV chemo steroids were causing “roid rage”.

But even more challenging than the need for ongoing research was the realization that, as another caregiver sagely observed, “there are always new fires to put out.” There was very little calm space between the challenges; they kept coming, one after the other. Sometimes we both felt like the Joe Palooka dummy that keeps rolling with the punches and returning to the upright position for yet another hit. Keeping a sense of equanimity was an ongoing endeavor. Without an already-established meditation practice, I would have been a sinking ship.

Another unspoken challenge of the caregiver/patient advocate is the understanding that there are some bits of information that must not, cannot be shared with your loved one. Coming to this understanding was excruciating for me. John and I had agreed on total transparency, that I would do the research for him and filter what he needed to know. But the more I learned about his prognosis, the more I realized that I could not share.

This had nothing to do with our not wanting to discuss his death; we were totally open about the fact that he was most certainly going to die from this disease, and talked openly about what the time frame might be. Through my research, I came to understand that liver failure was likely. I learned enough about the details of how that might manifest that I knew beyond any doubt that if John were conscious at the time that the worst-case scenario occurred, he would die in a state of great fear. I was single-minded in my determination that I would do everything in my power to create the circumstances for a peaceful, serene death for my beloved husband. His doctor at the time proposed a “solution” which was even more horrifying than the worst-case scenario, which if implemented, would have actually created even more suffering.  Keeping my own counsel on this vital point felt like a betrayal of confidence, and yet,  I knew that I had no choice. In the end, my fears came to pass, but in a relatively mild way. My 24 years of hospice experience shaped my calm reaction, and John was able to die in a most serene way. He recognized what I had kept from him, and was able to express his gratitude for what he called “protecting me from the reality of what is happening to my body.” But the unspoken burden of withholding information from your loved one is excruciating, even with the noble aspiration of preventing unnecessary suffering.

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About surfingon

I live in Hawaii. I surf in the winter and swim in the summer. I have been a hospice volunteer with a contemplative-care oriented hospice for 25 years have been part of their team that trains new volunteers for the last 9 years. I have walked the colon cancer path with my beloved husband these past 5 years. He died very peacefully in April 2009. I now seek to share what we learned, to shed light on the many dark corners of this often mystifying, heartbreaking and heart-opening journey.
This entry was posted in patient advocate, side effects of cancer treatments and tagged , , , . Bookmark the permalink.

One Response to THE HIDDEN BURDEN OF BEING A CAREGIVER/PATIENT ADVOCATE

  1. SaveMyArchie says:

    Thank you for writing this…

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