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Coping with Caregiver PSTD

A former caregiver's ongoing journey.
PUBLISHED January 10, 2019
Diana M. Martin has been an adjunct professor in The Writing and Reading Center at Montgomery College in Rockville, MD, for over 15 years. She has a MFA in Creative Nonfiction and has published articles in the areas of parenting, health and cultural arts. When her husband lost his battle with cancer of unknown primary, later identified as bile duct cancer, she became the sole caregiver for their adult son, Alex, who is autistic.

Coming down from taking care of someone with cancer is like an addict going cold turkey. Every day I took care of Dan, we followed the same unbearable routine; the last weeks were especially traumatic for me. It's been three years since his death, and I think I am slowly emerging from PSTD. It has been difficult to assimilate back into society. I feel that only a few select people understand what I experienced as a caregiver not only for my husband of 25 years, but also for our son who has autism.

I keep a close-knit group of friends, and I would like to have more, but I feel awkward. How much of my past should I reveal? I find myself drifting slowly away from people who have it all – the good marriage, health, successful children, etc. I know that everyone has their own cross to bear, but still, my experience is totally different. "I'm happy for you," I say. Maybe they can sense my jealousy, or longing.

In addition, when I hear about another person in my inner circle with cancer, I want to tell them everything I know about chemotherapy, radio embolization, diet, herbs, experimental treatments and the list goes on. I have to stop myself from posting a long response on Facebook or from picking up the phone "trying to be helpful" by insinuating that there might be a more effective, newer treatment that they should try.

When I hear about others with cancer, I feel the same anxiety that I had when my husband had cancer. I worry that my friends with cancer will die. I convince myself that their cancer will come back, and I cry inside because I knew the journey to be brutal. I find it hard to congratulate them when they ring the bell after receiving their last chemo treatment because I don't fully believe in remission. It will come back, I think to myself, and it will bring with it an army ready to destroy. If a person was diagnosed at an early stage, I am more hopeful, but if he or she has one of those cancers with a reputation for being especially stubborn, I become a realist instead of a dreamer.

I didn't know what to do about all of this anxiety and nervous engery. I tried exercise, medication, diet changes, therapy and it was still there. So, I co-exist with it. It is just another side effect of living, and life is too precious to give up or give in to the negative. Someone told me about a free app called Insight Timer. I love it. It has so many free meditation and self-help sessions to choose from. Today I listened to The Velveteen Rabbit read beautifully by Glenda Cedarleaf. It reminded me of the people who loved me, and those who still love me that make me real every day so I can continue to write and love them back.

At the end of January, I will be learning Reiki so I can hopefully volunteer at cancer centers and at hospice for people who need healing and support. Today I found a clear large glass vase, and at the urging of someone I met through a meditation group, I will write one thing I am thankful for each day and drop it in the vase. By the end of the year, I will have 365 things I am grateful for. What a great idea. I will be anxious over nothing or NO THING. Isn't that a clever way of thinking? I forgot which guru I heard that from. I used to think the world is full of crazy people like that who can roll with the punches. Today, I strive to be one of them.


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