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The Beryl Institute invites members to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, please contact us at info@theberylinstitute.org.

 

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A Caregiver's Guilt

Posted By Sara Shearkhani, Tuesday, June 24, 2014
Updated: Monday, June 23, 2014

Have you ever felt that breathing is hard and painful? Have you ever felt that you need to run away and leave everything behind? Have you ever, ever, lost your dreams? Well, cancer makes you feel all the above.

Do not get me wrong; I am not the cancer patient. I am the caregiver. I am the one who everybody asks, with a sad voice: How is your husband, the cancer patient, doing? And they never ask, how I'm doing. And that's why I had so much trouble writing this piece. It seems nobody believes that it's my story too; even me! The feeling of guilt is unbearable. Is this my story to write? Do I have any right to write about my husband's story? Do I, as a caregiver, have any story to tell? If I do, why do I feel so guilty writing about myself, my pain, my story? Why do I feel guilty?

When he was diagnosed with cancer, we were told that it was his story; it made sense to me – for a while. But, eventually, I realized something was wrong with this picture. And with that realization came solitary, lonely, and crushing guilt. You continually question your actions and attitudes: Am I being selfish? Am I a bad wife and an awful caregiver? Am I betraying him by being selfish? Does it mean I will leave him?

In any case, the problem became clear when I had to deal with his seizures. The doctors, pretending I wasn't there, asked my husband what his seizures usually look like! Okay! I stared at the doctors, so they would feel uncomfortable and notice me. How on earth would he know what his seizures look like? I am the one who gets to watch him during the seizures. Yet, I did not dare speak. After all, it was his story!

Or, probably, the feeling of guilt came when I was administering all aspects of my husband's care since he was in denial and shock and wouldn't do anything at all. It was a great deal of responsibility; you have to be really careful about the decisions you make for the patient: They might be wrong; you will be blamed for it. At best, you need to explain yourself all the time. Like the one time that I took my husband to ER for a seizure that according to his oncologist was a focal – or limited – seizure; the doctor wrote to us that such behavior – taking my husband to ER – only served to intensify our anxiety; we needed, he said, to "move on!”. Let me explain something for you; we were on a trip and during the seizure my husband bit his tongue and blood was all over the place. I did it again; I'm having to explain myself, again!

I felt guilty when I experienced all the side effects of the chemo on his first day of chemo! The poor thing ended up taking care of me. Ah, such an awful caregiver I am! I also felt guilty when I made good friends through support groups and I got to transform my life with their help. After all, it's his....story…

I guess the point I'm trying to make is I, as a caregiver, have had a tough time dealing with the situation. My fight started the very moment his fight began. And everybody, from myself, to you, dear reader, needs to understand that it is OUR story. So, next time you talk to a caregiver, do me a favor, and ask her or him: "How are you doing?”

Sara was a Ph.D student in economics but had to take a break to help her husband with his treatment for brain cancer. She is now a patient and caregiver advocate and has changed her field of study to health policy.

Tags:  caregiver  family  guilt  patient advocate  patient experience 

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