From Jenga Tower to Stable Structure: My Caregiving Support System

My support system repeatedly crumbled like a Jenga tower until it didn’t.

Support

“Support – A source of comfort or encouragement.” – Oxford English Dictionary

I thought I might crack and was aware of the need to support my emotional, mental and physical state of being, but building a support system was a lot like playing a game of Jenga, and I wasn’t in the mood for games. Just when things started to look stable, the whole structure crumbled. On other days, it felt like I was trying to assemble a jigsaw puzzle, but the pieces morphed into different shapes that wouldn’t fit together. The elusive image of a calm and controlled caregiving picture was not developing.

I was certain that there was a missing piece. I couldn’t understand why some caregivers were able to manage gracefully with gratitude, and I felt like I was seated atop an unstable tower of blocks that repeatedly imploded. When the pieces in my support system finally started to fall into place, it became clear which pieces fit and which pieces needed to be discarded. Several endeavors that had not previously offered relief began to provide a tremendous amount of support. It was a fascinating evolution. I hope my struggle with the Jenga puzzle will inspire you to keep at it until you find your key components and your cornerstone.

A stable tower

Family caregiving support for many involves connections to other people, other family caregivers, a house of worship leader, a therapist. My path led me inward and away from people in many ways. Certain self-care activities became critical to well-being while others were value-added. The must haves became my support blocks. They were not more or less important than the infrastructure components, they were simply more spirited.

The infrastructure pieces were fluid, involved growth, and were constantly evolving. They weaved through daily activities and changed the color, the flow, and the intensity of the experience. The foundation was the grounding philosophy that provided strength and stability. The cornerstone was the heart, the key to how it all fits together. Here is how I built my tower.

Foundation and Cornerstone

Stoicism

The foundation is the truth that guides my thoughts and actions. I find stoic philosophy principles to be strikingly similar to the core beliefs and teachings of many religions, without the baggage.

“Foundation – An underlying basis or principle.” – Oxford English Dictionary

Many well-known guiding principles share foundations with stoic philosophy, “This too shall pass.”, The Serenity Prayer the concept that something is neither good nor bad, but that how we respond makes it so. The stoics were not devoid of emotion but were masters of emotion. Amor Fati became my mantra. “Love your fate” became my mission. This acceptance has been a gift of perspective and peace. It keeps me from questioning, “Why me?” and keeps me focused on, “What now?”. It drives me to answer the questions, “How can I make the best of this situation?” and “How can I help others who are struggling with similar challenges?”

Love

The cornerstone is the first stone set in the foundation. All other stones are placed in reference to this stone. Love is the cornerstone of my support system.

“Cornerstone – An important quality or feature on which a particular thing depends or is based.” – Oxford English Dictionary

My tower was crumbling over and over because I was low on love and compassion. When my levels returned to full, my way forward became clear. How does one fill back up on love? I believe this is also a puzzle to be individually solved. For me, it was an energy-healing session with Rani.

I had so much resentment, and anger built up that I didn’t recognize myself, my reactions, my thoughts, or my heart. I wanted desperately to return to my former compassionate self, return to me. My search for me led to Rani. I didn’t have anything to lose. After the session, I felt a complete body high (what I imagine that would feel like). I went to a park and just stared at the water. I was in a different place. Later, I was told that people feel lighter afterward, and that probably described it better.

“It is not the load that breaks you down. It’s the way you carry it.” — Lena Horne

It was a reset button. I got a second chance. The support methods that I had been using without result began to produce calmness and clarity. The infrastructure skills that I had been cultivating began to feel meaningful and powerful. I can’t explain it, but the first session was a transformational experience, and I am forever grateful.

Support blocks

These are the activities that helped me re-center each day.

Exercise

In the early days, I ran and, during the runs, would replay conversations in my head. I was laser-focused on the lack of agreement, the absurdity of the arguments, and the unwillingness to compromise. At the end of the run, I was fuming angry, ready for the next round. My runs today are filled with mostly positive, productive thoughts or no-thinking observation. I feel a physical and emotional peace at the end of the run. There are still problems to solve, but solutions often present themselves on the runs without effort or angst.

Nature

Spending time in nature became an obsession. I transitioned from being an extreme extrovert to preferring only the company of birds (and my husband). “Mybirdtherapy” became a personal hashtag on Instagram. I scored an after-hours pass to Honeymoon Island State Park. The early access gave me alone time with the birds at sunrise. Sometimes I would go for a run and other times, sit with them as they accepted me as one of their own or thought I was fishing and waiting for a handout. Either way, it was a special relationship.

“Look deep into nature, and then you will understand everything better.” – Albert Einstein

Joe and I paddled to two spoils island bird sanctuaries on a regular basis to watch and listen to the crazy mixture of feathered shapes and sounds. These early mornings, with Joe in nature, offered the escape that I needed to stay found and be present when the path forward was uncharted.

Music

Music has always been an important part of my life, and a certain group stole my heart. I now have a circle of friends, who all have a similar story about the first time they saw Magic Giant perform. In addition to attending shows from coast to coast, I have gone to their music festival, Camp Misfits, two years in a row under the redwoods at Camp Navarro in California. I have a tattoo of my favorite lyrics, “There ain’t no city in our stars tonight.” The lyrics describe where I want to be when I can just be.

“Some days there won’t be a song in your heart. Sing anyway.” — Emory Austin

MG’s song and video, “Shake me up”, played a big part in dragging me out of my funk and plopping me on the path to a more sustainable caregiving experience, a more sustainable life experience. Everyone needs a Magic Giant.

Journaling

I journaled, but in the beginning, when the emotions felt like cinder blocks on my chest, journaling didn’t offer the release that I needed. My gratitude journal felt like it was one more failure because it wasn’t working. I am now, however, grateful that I journaled because I can see where I have grown and understand with compassion why I struggled. This insight has helped me heal and help others find the secret support system that works for them. When the other pieces of the puzzle fell into place, journaling became a passion that fueled me.

Stillness

Meditation

A meditation coach, Rani, once told me that there is no correct or incorrect way to meditate, just better ways to meditate. This was a relief because I was convinced that I would never get it right. I struggled with certain aspects, but once the pressure to be perfect was removed, I found a connection with guided meditations, visualization, reflection, and sound bath meditation. What all types have in common is sustaining attention on one thing for an extended period of time.

Meditation is thus a form of centering, which involves our disengagement from the machine of our mind and our resting in the heart. – Georg Feuerstein

Keep exploring the alternatives to find the path to stillness that resonates.

Mindfulness

I used techniques throughout the day to practice mindfulness. One favorite that was not possible in the early days was to observe a situation unfold with curiosity. I met Ben and Roz Zander, the authors of The Art of Possibility, and Ben shared a strategy that stayed with me. In between that moment of incident and reaction, observe and say to yourself, “How fascinating.” It offers an opportunity to not take ourselves so seriously. It gives us an instant to get out of our heads, get over ourselves and maybe even see some humor in the circumstances. Their book came out in 2002 before mindfulness went mainstream. It was my first introduction to the power of the pause.

Another practice I have embraced is to use the five senses to refocus attention on my surroundings. This is particularly powerful when combined with time in nature.

“Lose your mind and come to your senses.” ― Fritz Perls

I spend a period of time paying attention to sight, sound, touch, smell, and taste, and the focus on sensory input reveals magic.

Breathing

Breathing exercises have been transforming. I am frequently in awe of the calm achieved by counting during the inhale, hold and exhale. This practice works as well as a lullaby when I wake up in the middle of the night when the worries lurk like shadows in the dark.

Infrastructure

These are the activities that helped me grow and develop a deeper understanding of the caregiving experience. Journaling and meditation worked symbiotically; The latter created space for clarity from the former.

Continuous exploration and learning

Spiritual practice

I resisted religion. I spent my 20s, and 30s trying to sort through the lies to get to the truth. Throughout the exploration, I felt a spiritual connectedness to life and a guiding source within. My quest continued through my 40’s and, as I reached 50, backslid during the first few years of caregiving. I railed against reality and resisted rather than search for meaning. Back on track, I find the opportunity for spiritual growth in all aspects of life again.

Books and Websites

Denise Brown, the previous owner of caregiving.com and current owner of The Caregiving Years Training Academy, was a tremendous source of insight. Her work helped me understand the framework of the caregiving experience by breaking down the caregiving journey into stages. Within the stages, there were common stumbles and steadies. There were coping skills that could be developed and used along the way. This information was empowering. It gave me hope. It inspired me to help others.

One book, in particular, became my operating manual, The Obstacle is the Way by Ryan Holiday. Many caregiving books have played a part in paving a rough road. Here are three that were indispensable:

Courses

I took a course from Zen Caregiving Project, Mindful Family Caregiving, Four-Part Online Series. When I took it, our group included professional caregivers as well as unpaid family caregivers. It appears that there is now a definitive course for each group and I think that the focus on the family caregiver will add value to a valuable course.

I wish I had had the knowledge from the course earlier in the experience. That said, I may not have been ready to accept it when I had yet to understand the significance and context. This course taught me about the importance of self-compassion. It put a spotlight on boundaries. I was able to understand how roles and responsibilities were off the rails in the beginning, which caused a tremendous amount of conflict. It was interesting to further explore loss and resilience. Mindfulness tied all of these components together. It was clear that cultivating each of these practices, mindfulness, self-compassion, resilience and setting boundaries, led to a more sustainable caregiving experience.

I subscribed to several courses on DailyOM.com and had high hopes for one, in particular, Re-parent Your Inner Child. It made sense that my injured inner child was not happy about our current relationship with Dad. I discovered that my inner child wasn’t significantly injured, and while the course was insightful, it didn’t result in a change in my perception or actions. I still learned a lot, and this method of learning and these courses have proven to be an important way for me to explore and grow from the caregiving experience.

Save for later

I used these very valid support components in the early years and found that long term, they didn’t fit into my support system. I am still on the journey and will use them again if needs change.

Support group

I looked for a support group and only found disease-specific or hospice groups. I could have attended them, but I was concerned that because my challenges were based primarily on age-related issues, I would be perceived as someone who was complaining. My Dad was 98, had lived a good life, and was healthy and thriving. I, rightly or wrongly, imagined the experiences of a group whose family members were dealing with Alzheimer’s, cancer, or end-of-life worries, and it didn’t seem a good fit. When I came across the rare person who got it, who could relate to the caregiving experience, it was a tremendous gift. I imagine a support group offers similar validation.

I found a Facebook group, but the advice I received made me feel like I should be more grateful and that it could be worse, so suck it up. The responses that were intended to help left me feeling judged. Many of the shared challenges seemed so overwhelmingly hopeless that reading them caused more anxiety than comfort. I felt deeply for each of the adult children who wrote asking for advice, and I wanted desperately for all of them to feel better, to get some relief. This connection was not the support I needed at the time.

Talk therapy

I was new to therapy and tried several therapists. I shared my objectives for the sessions. My primary goal was to better understand my emotions and understand why my anger was so out of proportion to the situation. My therapists wanted to solve the practical problems rather than uncover the reason for my reactions. That was low-hanging fruit. Through research, I found cognitive behavioral therapy. I was convinced that it was what I needed. The local CBT-trained therapist charged $265 an hour and did not take my insurance. On to plan C. I had a therapist tell me that my problem was that I had ADD. I do talk too fast when I’m ___________. Fill in the blank, and it would probably be correct, but I don’t have ADD.

I had a therapist tell me that it was my fault that I was in this situation. She wasn’t wrong. She also wasn’t helpful. I didn’t need to feel blame or guilt on top of guilt because I put myself in this situation that I wasn’t handling well. Her parents were in their 90s and lived an hour away in an Assisted Living Facility. In one session, she shared that she could never live with her parents. I get it. I chose this path, but wouldn’t necessarily recommend it. What I needed was help with walking it. That was an expensive eight weeks at $125 a session.

Before her, I had spent time with my most helpful counselor and went to see her one more time. While she also tried to solve my practical problems, she hit a few home runs. I returned to her, and she shared for the first time that she was also caring for a parent who was in an ALF. This was new information, and I had seen her several times. She acknowledged that she was dealing with much of the same struggle that I was. I really enjoyed talking with her and always got something out of our conversations, but I realized that talk therapy was not for me. Maybe my expectations were unrealistic.

Friends and family

Friends and family offered a mixed bag of support. If someone had not been in a caregiving role, they were very unlikely to be able to relate and demonstrate empathy. In fact, the opposite was true. Their response was often insensitive, resulting in added layers to the feelings of inadequacy and guilt. A few family members have also made insensitive, unsupportive comments. They simply didn’t get it and won’t until they are in a caregiving role. Other family members have been very supportive, empathetic and expressed gratitude for the care we are providing. It was appreciated, but I did not seek out their ear for empathy. Folks are all dealing with their own challenges. I found that spending time with friends and family as an opportunity to catch up on their lives and as an escape from worries rather than as an opportunity to vent provided some support.

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.

From Jenga Tower to Stable Structure: My Caregiving Support System

Support

A stable tower