A travel journal for the caregiving journey
Journaling has been a way to process the complexities of caregiving, the emotions, the fear, and the confusion. It has been a way to capture fun and funny moments. We will have a record of the experience and a travel journal that documents the caregiving journey. It will shine a light on the growth and how far we traveled. I have continued to journal through Isolation 2.0, the COVID-19 period. The opportunity to reflect has helped me stay focused and productive during a time when both focus and productivity fluctuate from minute to minute. I will be able to look back at this time and remember what it felt like, what it looked like, and how we spent our time rather than recalling a blurred existence of social distancing.
“I don’t journal to ‘be productive.’ I don’t do it to find great ideas or to put down prose I can later publish. The pages aren’t intended for anyone but me. It’s the most cost-effective therapy I’ve ever found.” – Tim Ferriss
Motivations for journaling may differ. For me, journaling thoughts and exploring them with curiosity and objectivity has been therapeutic. Self-reflection through caregiving has been healing and has provided raw self-awareness. I learned about the importance of self-compassion as a caregiver and employed this filter of sorts when reading back through my journals. Looking back, I was shocked at how either fear or presumption had driven many of my thoughts and actions. Recently, when I read my account of the incidents that caused conflict, I saw the emotions but didn’t feel them. I remembered them and understood them, but from a distance. With that distance, I clearly saw the assumptions and the perspectives that were at extreme odds.
Dad’s journaling began during WWII
Dad kept a journal. I remember him writing every evening while smoking his pipe and sitting in “his” chair. He wrote in 9.5”x6” spiral-bound notebooks. I know the exact size because we still have some of them. The 1996 through 2015 entries are contained in 12 books. The original 1985 to 1995 have been summarized into two notebooks. He also documented his time on a ship (LST-758) in WWII during the invasion of Okinawa and Iwo Jima. He wrote in one of the books that were intended to be used to keep track of and manage tank oil levels. Keeping a journal was prohibited, but he was the Oil King Tender, and his transgression went unnoticed.
His instrument of choice was a pencil. A common theme throughout the years was a focus on living a healthy, fulfilled life. Many pages contain summaries of key points from self-help books by David Burns, Deepak Chopra, and Andrew Weil. Dad wrote lessons from weekly homilies, always giving credit to the priest who shared the words of wisdom, Fr Jack, Fr Joe, Fr Kevin, Fr Hoeffner. He rarely used a priest’s last name, and I was intrigued when he repeatedly wrote Fr. Hoeffner’s message. A bit of googling uncovered that he had been a priest in the Orlando area who had taped and broadcast a TV mass for 28 years. Dad apparently watched and took notes but didn’t remember him.
Dad’s caregiving journey documented
I found one period of Dad’s journaling quite interesting. Periodically, he used large capital letters and exclamation points. He expressed frustration and, anger, hopelessness. After each of these out-of-character entries, he wrote a word that indicated resolve, resolve to do better. His frustration was with his mom, who was 98 at the time. She was the age Dad is now. Dad didn’t have the benefit of books on caregiving or websites for support. There were no Facebook pages where he could commiserate or seek advice. Journaling was therapy. Plus, he had exercise, faith, music, and a mantra, One day at a time.
Deja Vu
He wrote, “Complaints of legs, hearing, seeing – at 99 problems expected, but not accepted.” This was deja vu. I felt oddly validated. “Music and exercise. A lot of exercise. To reduce tension.” Dad wrote about the challenge of his mom’s lack of willingness to use handheld magnifiers. “Desire must be there. Give up?” I almost couldn’t believe what I was reading. I could have written it. His frustration with his mom’s excessive worrying, her desire to feel okay all the time, having to repeat himself, and her falls were wearing on him. He wrote about how people have different needs to live a fulfilled life during each decade of their lives and that his mom’s needs at the moment were based solely on existing. He contrasted that to his desire to live life to the fullest. I was in disbelief.
Familiar struggles with patience and compassion
It was intriguing and surprised me that he struggled with caring for his mom in the same way that I struggle. “This has been a day!” Man! What’s she afraid of? Can it get any worse than this? You bet!” He wrote about his struggle with impatience and showing compassion. “Mom requires patience I have yet to find.” A month later, “Nothing seems to trigger the curse of impatience more than the lack of hearing in another. With the lack of hearing seems to go lack of compassion.” He writes about being pushed over the edge and then writes, “This can’t happen.” He saw his reactions as a weakness and rallied. The moment he realized that his mom could no longer keep track of her medicines was significant. He wrote it in caps, punctuated with several question marks. Then, “ONE DAY AT A TIME!” across the entire page.
The benefits of journaling
In a podcast episode, B. Lynn Goodwin shared that while caring for her mom, she used her journal as a place to put her anger. Support groups did not work for her, but journaling did. She started coaching family caregivers in the journaling process and saw many start from a place of anger or frustration and move to a place of grace through their writing. In her words, she “wanted others to have a safe place where they could dump the outrage, where they could write and know it’s not true as they’re writing it.”
“Write hard and clear about what hurts.” — Ernest Hemingway
Lynn does not read her journals from that time in her life. Many of us can relate. We feel shame about these emotions and a journal is a safe place to store them. As Denise said, “When you’re on the journey, it’s very hard to see the progress. These journals, whether you look at them or not, represent that you have evolved. You have moved forward.” Equally important, journaling can help a former family caregiver through the period following their care recipient’s passing. As Denise points out, this is just another stage of caregiving. The question to be answered is, “Who am I?” The answer is no longer, “I am a caregiver”, and journaling can help the former family caregiver work through the process and find a new answer.
Maude Percell writes about journaling and its positive impact on our health in her article, The Health Benefits of Journaling. The practice helps us clarify our feelings and understand our motives. In addition to stress reduction, journaling helps us with problem-solving and working through disagreements with others. This is foundational to sustainable caregiving. It is a crucial piece of self-care while caregiving. Writing calms me. Clarity is empowering. I keep a journal separate from caregiving so that I can stay in touch with the non-caregiving present as well as explore thoughts surrounding a future post-caregiving. Here are some questions to prompt your thoughts if you are having trouble getting started, 30 Journaling Prompts for Self-Reflection and Self-Discovery.
The WOW moment
Dad also wrote about travels, weekend trips, and weeks in Europe. There were excerpts from biographies and books on history. He covered politics and current events. He wrote about outings with friends and Mom’s health which weighed heavily on him. During one of Mom’s more difficult hospital stays, he listed his emotions, “All negative – tired, distrustful, anxious, weary, apprehensive, angry. But keep the cool. If no release tomorrow, a calm demand to talk to the doctor.” This made me sad to read. He must have been frightened and felt very lonely.
For the first time, I realized that he had been caring for Mom at the same time that he was caring for his mom. WOW! That must have been incredibly hard. The journal included a list of mom’s medicines and notes about doctor’s visits with her cardiologist. I remembered being so worried about Mom. They kept information from me so I wouldn’t worry and that worried me even more. I had no idea that Dad’s mom was causing him so much anxiety and that caring for Mom was so terribly stressful.
Dad writes on 1/30/97, “Three weeks after surgery, B has too much fluid retention due to a misunderstanding, misinformation doesn’t really matter. Write it down. One day at a time.” B was my mom, Barbara. He was referring to what we, as caregivers, all learn at some point. The healthcare system is imperfect. When a family member is in the hospital, there is a lot of new information to process. Mistakes happen. Writing or recording the information is helpful. Forgive yourself and move on. Tomorrow is another day.
Caregiving has changed us both
This also resonated, “Trying to keep up own physical, mental, household, psychological needs and at same time concern or obligation to care for those of others – which cannot really be done – is a strain and drain on the mind-body. It is as if give up all of own self – goals and aspirations to meet or try to meet those of other. You are not alone.” He was referring to his faith at the end. Following this he wrote, “Story makes us who we are” along with words from Fr. Jack about service, sacrifice and surrender. These sermons functioned as his operating manual for life and offered the framework for how to manage the challenges of caregiving.
In 2008, the year Mom passed, his subject matter revolved solely around her needs. He documented who came to help, doctor’s visits, dialysis, changes in her health, and medicines. It was all-consuming. He briefly noted that he didn’t know how long he could continue. There is no record of the three months prior to her death in November. He reached the end of the journal in August, and I couldn’t locate another until exactly one year after her passing, in November 2009. Living out of the country at the time, I talked to them both weekly and had no idea that life for them was so challenging. Maybe, I didn’t want to know.
Dad was changed by his experience taking care of Mom. I have already seen my own transformation and know that it will continue. To fellow family caregivers, I say, “We will not be the same at the end of our experience.” Our situation can feel helpless. We bend, and we feel like we will break, but we don’t.
“To grow high and proud, a tree needs storms.” Irvin Yalom
Instead, we develop skills and superpowers. We learn resilience and become wiser. A record of this transformation will be a powerful reminder of our strength.
Significant as well as daily events shape our lives
Dad sketched. As I was flipping through one journal, I was intrigued by the sketch that was a few inches long and roughly detailed. As I began to describe it to Dad, I realized that it was the twin towers burning, Manhattan, and two bridges. He wrote about it in a very philosophical way. It was an attempt to process what had happened and why. He asked more questions than he wrote answers.
There were weekly entries about aging, fitness, and the stress-relieving benefits of working out. He wrote lists of healthy foods from articles and information about fiber, cholesterol, and supplements. He still does that today. I find random lists of food and have no idea where the information came from. He often can’t remember. Quinoa was on one of the lists in his journal. Funny, I thought that was a new, ancient grain, but he wrote about it in the ’90s.
“Journal writing gives us insights into who we are, who we were, and who we can become.” ― Sandra Marinella
The word smile appears on practically every third page. He does smile a lot. I have to wonder if he was drawn to material that discussed the power of smiling or if the information wound its way into his fibers. Maybe both.
A medical journal
In addition to a journal documenting the ups and downs of caregiving and the emotional rollercoaster, I keep a notebook with medical information. It has spreadsheets with Dad’s meds, physicians, and a record of hospitalizations. I include notes from doctor’s visits, what Dad said, what the doctor said, what changes were prescribed. I track symptoms and his vitals when necessary, including blood pressure, pulse, oxygen, and temperature. Pre-coronavirus, the log contained the communication between our aide and me. This type of journal helps me keep track of recurring events. When I realized mismanagement of medicine had become a pattern and incidents were happening more frequently, I could act. The record offered a timeline. It helped us determine when what we were doing wasn’t working, and we needed a new system. Dad had recorded this same information for Mom. He kept one journal, whereas I keep three, but the caregiving content is remarkably similar.
COVID-19
I started reading Dad’s journals with him because I wanted to fill in the gaps of his missing social life. Spending more time with Dad was long overdue. It was always an intention, but there were many distractions. Managing his care took a lot of energy, and at times I used that to justify not spending social time with him. In this way, isolation has been a gift.
Speaking abut the corona virus? “If you haven’t been journaling through this, now is a good time to start. One day, you and people who love and loved you and people who will never know you may want to look back to understand how you survived.”
― Darnell Lamont Walker
Ryan Holiday promotes journaling in his book Stillness is the Key, “Instead of carrying that baggage around in our heads or hearts. We put it down on paper. Instead of letting racing thoughts run unchecked or leaving half-baked assumptions unquestioned, we force ourselves to write and examine them.” This is one way to lean into the overwhelm of caregiving, of social distancing, of life.
“Writing is medicine. It is an appropriate antidote to injury. It is an appropriate companion for any difficult change.” — Julia Cameron
So, where and how to begin? A journal can take any form or combination of forms. Your journal may be photographs, poetry, video recordings, drawings, random thoughts, a diary of activities, and answers to life’s questions. Check out Ryan Holiday’s journaling tips on how to get started and stay with it.
Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.
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