How to Reduce Stress During Caregiving
Journaling to Track and Organize
Thank you for reading The Pause Place.
I started The Pause Place as a space to navigate between grief and hope. I open this article with caregiving for my son, Nick, who was diagnosed with leukemia and died four months later. To understand the connection and read more on my journey, I invite you to read the first article in The Pause Place.
There’s grief in the caregiving role whether it’s for a child, partner, parent, or any loved one. Some aspect of your relationship with that person has died. Their life has changed. There’s a new ‘normal’ so previous expectations shift. Doesn’t mean there can’t be joy but in that change is a loss.
A loss of that time.
A loss of longevity.
A loss of relationship.
Loss of intentions, scheduled vacations, and memories you thought were going to be made with everyone involved.
Crises such as a cancer diagnosis, a parent falling and breaking a bone don’t come during calm ‘I’ve got it all together’ times. Our lives are full and emotional avalanches like these bury you. The debris of responsibilities and the physicality of caring for another steals your breath.
When reality sets in, you realize there’s a lot of tracking and organizing on top of grieving and stress.
When Nick was first diagnosed, I journaled sporadically but didn’t have time to focus on emotions except during those overnight stays at the hospital. My journal became a tracking list of temperatures, blood pressure, oxygen levels, fevers, doctors, nurses, aides. Most of it was garbled with names of chemotherapies I couldn’t pronounce.
Rage, poems, worry, HangMan, Tic Tac Toe. My journal was an extension of the chaos that ruled my heart and head.
My husband and I created an Excel sheet that was so detailed, the nurses and staff would ask us his vitals and what medication Nick was supposed to receive. We’re all human and pediatric oncology is exhausting. We had to stay on top of everything to avoid mistakes.
Not having time to process or plan for a cancer diagnosis, we organized as best we could in order to make clear decisions.
What we did during that time helped lay the foundation for organizing my loved one’s care. When she needed me to take her to doctor appointments, not only for the transportation but to remember what was said, I knew I had to be efficient and clear with my tracking.
As my journaling practice evolved, I stayed organized while also expressing my grief, hopes, and emotions. (More on this in another article.)
Here’s how I organized my loved one’s care but it can be for you or anyone. These suggestions are also what worked for my situation.
If anyone has something to add, shift, relate to, please offer it in the comments.
Feel free to use one technique or all. It’s easiest when you keep up with it. Takes longer if you wait because our memory fades even though we think we’ll remember.
Stress=forgetfulness
On your phone:
Voice memos: Ask the doctor or staff if you can record the appointment so you can listen and ask questions. They have always said yes. This is a great way to repeat what was said to the person you’re caring for. Save the memo with the doctor and date. Upload to your computer and/or online storage service.
Notes: For each appointment, create a note with the name of the doctor and date. Add in any questions. Take brief notes like blood pressure, weight, diagnoses, decisions, action plan.
Calendar: Input upcoming appointments to make sure you have space for work, yourself, family, life. Also ask them to print out the appointment for the patient so they can add it to their calendar.
Journal/Binder: I always have a journal with me and I use it for every aspect of my life. For general journal tips and prompts feel free to read Janine’s Journal Jam. Below are some journal organization tips that work for me.
Excel/Online Storage Files: Everything can easily be stored online so that other members of your care unit have access to information. It’s an efficient space to retrieve information anywhere.
I happen to use Google Drive but it can be any online storage system. Thanks to Jodi
who suggested using an online storage safe.
This excel file is generic so you can input medications/doctors/hospital visits for yourself or anyone you’re caring for. Again, it’s what works for me but refer back to
@carermentor article for her tips and suggestions. There are many ideas in the comments. It inspired me to write this article. I thank her for all the insights and this community for creating this beautiful space!Caregiving is stressful and affects us on all levels. Setting up a system to make it easier to access information and track appointments and changes. Doing this can hopefully reduce that stress and save time so that you can spend joyful moments with your loved one.
What tracking/organizing method do you use for caregiving?
Feel free to share your templates or how you track. As @carermentor has noted, there is no ‘right way’ but together we can figure it out.
What a great and practical resource, thank you for sharing!
Janine, thank you for taking the time and effort to write this for our community.
The Excel file is so cool! Thanks for including Jodi's idea too. You've generously shared all your prompts and ideas here - so much value in one article!
Your point about Stress = forgetfulness is true. Even with 3 pairs of ears we heard different things for Dad's care. These days I'm sorely tempted to voice-record consultations. Keeping track of everything can be a nightmare. Having some sort of system is essential. Thank you. I'm listing this in Carer Mentor asap!