Writing for Caregivers
An advanced breast cancer diagnosis is devastating and can be difficult for loved ones and caregivers. Writing can also be a helpful tool for cancer caregivers. It can be a means to communicate, share news and information and keep family and friends updated. Communication could be in any form – a blog, Facebook, Instagram, email, or CaringBridge. Using a central source can be freeing as it allows people to save time and effort when communicating information which may help reduce stress.
Just as an individual reeling from a major diagnosis wants to know they are not alone, so too do caregivers need to know they are not alone. Through writing, caregivers can get encouragement and support from others at a time that can feel very scary and isolating. In addition, writing allows you to provide help and support for your loved one who may not have the time or energy to communicate information themselves to their circle of family and friends. Your writing can be a way for others to stay informed without feeling worried about "bothering" your loved one with questions.
Personal experience as a caregiver
When I was a caretaker for my father during his treatment for pancreatic cancer, the blog I created was not only a communication tool to disseminate information to friends and family about what was happening in our family, but it was also a way for me to capture and share my thoughts and feelings. In this way, my blog became a time capsule of a period in my life and my dad's life. I'm grateful to have this to look back on because without it I would have forgotten many of the smaller details of day-to-day living with a terminal illness.
Writing tips on getting started
Writing as a caregiver is different than writing as the person with the diagnosis because it involves more people. Be sure to talk with your loved one about your desire to write. Talk about your intentions for the writing. If you just want a place to vent and it won't go beyond the covers of your journal, let them know that. However, if you want to perhaps use your writing as a way of sharing information with an audience, talk to your loved one about this. Explore what you both feel comfortable with sharing and with whom the writing will be shared. In the case of my dad, he was very encouraging of me to use my blog as a way to keep our friends and family updated as well as share my fears and frustrations as his caregiver. He often read the blog himself and it was a wonderful way for us to enter into a conversation around caregiving challenges. He also shared with me stories from his life, which I then shared on the blog and he had the satisfaction of sharing his legacy in this way as well.
But not everyone is comfortable with someone else writing about their experiences, particularly medical experiences. Talk to your loved ones and find out what they would be comfortable with you sharing. In the beginning, you may need to keep your writing purely factual, or purely from your own point of view. I know some couples where everything is ok for the caregiver to blog about except their personal intimacy (or struggles with intimacy). In this case, the caregiver is either asked not to write about that aspect of their shared lives or to only do so in a way that is anonymous. Writing as a caregiver will likely be something that evolves over time as you both get comfortable with the idea.
Give yourself permission to write whatever wants to come out. Even if you've decided on a blog format for your caregiving writing and intend it to be shared with an audience, be sure that you also have a place for writing that is more private. Keep a journal for releasing and exploring deep feelings. Caregiving is hard work and writing can be a healing tool for you, too. Some of this writing might eventually become content you use in a blog post but I urge you to have one place for a stream of conscious writing that is private. Let this be where you let out your more "raw" thoughts and feelings. I call this "writing from the wound." Then the blog becomes a place for writing that is not necessarily being processed right now, but instead writing that is "from the scar."
Prompt for getting started
Poems and simple quotes are great writing prompts. They provide something for the brain to chew on. A good prompt gives the mind an entry point to the blank page. Here is a quote and a prompt to get you writing.
“Some days, 24 hours is too much to stay put in, so I take the day hour by hour, moment by moment. I break the task, the challenge, the fear into small, bite-size pieces. I can handle a piece of fear, depression, anger, pain, sadness, loneliness, illness. I actually put my hands up to my face, one next to each eye, like blinders on a horse.” -Regina Brett
Prompt: Tell me about how you cope with the hard days.
Instructions: Set your timer for 10 minutes and then write without stopping or editing (there's plenty of time to worry about grammar, spelling, and what not later). Don't worry about what you should say, write what you want to say.
How old were you when you were diagnosed with metastatic breast cancer?