Death Rehearsal

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Death Rehearsal

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am not just burned out, I am torched from a seven-day death rehearsal, a painful week of intense caregiving. I am empty.

The Thanksgiving week started with optimism, but a meds change I was not initially informed of turned it into a long, uphill battle. My wife, and a well-meaning nurse, decided to drop a steroid she had been taking for months from her daily regimen because it caused her face to swell. That led to a week of me trying to care for a long list of previously unseen symptoms I later learned was a classic case of steroid withdrawal. I was hit with unmanageable pain to loss of appetite to constant nausea to my wife sleeping sixteen hours a day, but moaning in pain throughout.

All the meds at my disposal were useless. I admit that I was baffled. I thought I had seen everything, but what I was seeing made no sense to me.

After the holiday, I called hospice first thing in the morning and spoke to our primary nurse. Our experience was that the on-call nurses would only provide band-aide care. I wanted our nurse, the one with the most knowledge of my wife’s condition. She was deeply concerned and she contacted one of the doctors, who quickly dropped in for a visit. The doctor’s first thought was the cancer had progressed to a level where institutional care was required. Once she learned the steroid had been stopped, she ordered it restarted, and the positive results arrived hours later. The pain subsided; her appetite returned, and her life went back to a “normal” we recognized and welcomed.

My life, in contrast, has not. I feel very much like a man who has survived a natural disaster or a bad car accident. On the outside I appear “normal”, but I am shaking and exhausted and reliving each traumatic moment over and over again. I imagine this is what combat fatigue feels like; I am having difficulty disengaging from recent battle, and the thought that the battle was self-inflicted makes it tougher to accept.

This is year four of caregiving. What is left of my heart, soul, psyche, and liver do not need useless death rehearsals. Tomorrow hopefully I go back to work for the first time in a week, but as an empty, exhausted shell of an employee.

My severest critics thrive on reminding me that my writing is all about me. They will be pleased to know that as of this evening, “me” no longer exists. I feel beyond empty. I am now a shadow, extinct. I have faded away. I have been completely erased.

Until tomorrow, when it starts again…

Reposted from my blog http://besidesthecancer.org

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Casandra Porter

Every time I read one of your blogs I feel as if you are tapping into some part of me that I've been trying to keep hidden from everyone. They are just so powerful and honest. Of course your writing is about you. As writers we are taught to write from what we know and what do we know better than ourselves. I always thank my critics and kindly disregard those parts of their criticisms that don't conform to my truth as a writer. \r\n\r\nI am glad you were able to figure out what the issue was BEFORE they placed her inpatient. I hope you experience something that will breathe new life into you so that you can carry on without the burden of feeling empty. \r\n\r\nMuch love to you and your wife!

Denise

Hi Bob--Your blogs are so powerful and so important because you showcase the other patient--the family caregiver. A diagnosis impacts everyone in the family, including the patient. What you (and all the other bloggers here) do is advocate for all the family caregivers affected by a diagnosis. Your voice is so important but too often overlooked.\r\n\r\nHow did you do when you went back to work?\r\n\r\nI wish you and Carole many, many peaceful days.

Bob Marcotte

Yes, it's been one hell of a ride lately, and I want it to stop so I can get off!\r\n\r\nThank you for your comment and your support.

ejourneys

I agree with both Pegi and Thedogmama. I see the love and devotion in your entries, and your struggle -- for both of you -- through this latest ordeal. The critics don't live where you live; they don't experience what you experience. And your experience is valid.\r\n\r\nI wish you good rest and recovery, and the safety to express what you need to express, so that you have the health you need to continue.

Thedogmama

I too beg to differ with your critics. All about you is all about her. I can see her in my mind, sense her being, feel her suffering and know how much she is loved through your words. How can that be all about you? You are entwined. They are blind.\r\n\r\nMay this week bring peace and calm so you can regain a small sense of self. Keeping you both in my thoughts and prayers.