My caregiving journey started like many others. I did not know that I was a caregiver. I was simply a dutiful daughter doing what I had seen my parents do for their parents.
From Wading to Drowning
Joe and I had been in France for seven years on an open-ended contract. A fire in Dad’s condo sparked our return to the US, started when a tray of candles burned through the tray, then his dresser as he napped. He initially downplayed the fire as a minor incident but revealed more details over time. It was clear that we should be closer than an ocean away. Soon after we moved back, Dad had a stroke. In addition, it was evident to everyone but him that he should no longer drive. Then, his identity was stolen, twice.
Wading
We were confident and grateful that our timing was appropriate. Looking back, I remember helping here and there, and it felt good to be of service. Next, I remember when every waking thought was a worry. I don’t remember moving from one state of being to the next. The shift was gradual and likely started soon after the stroke and subsequent confrontations over the keys to the car. The loving, respectful relationship that Dad and I enjoyed began to crumble under this new caregiver, care receiver dynamic that neither of us wanted.
Drowning
By the time I connected with the term caregiver, I was drowning and burned out. What started as running errands and helping with finances turned into a full-time, plus overtime, all-consuming job with no pay, job description, authority, or appreciation. My services were both welcomed by Dad yet rejected as unnecessary because he believed that he was getting by just fine on his own. When I finally realized that my role had a title and my responsibilities could be defined, I was too overwhelmed to manage my job with the level-headedness I had previously possessed in my career. I rode waves of stress and worry of varying intensity throughout the days and nights. My path was not sustainable.
The Caregiver River
I came to see that the caregiving journey was like being in a raft on a river. There were calm sections, then rapids and swift water that knocked me off my feet, waterfalls that I didn’t see coming, and obstacles that blocked forward momentum and caused traumatizing frustration.
I was frequently tossed out of the raft and underwater.
At times, I was out of the raft, scarcely holding on as we bounced from rock to log, at the mercy of the wild current.
The Key to Control is Letting Go
As I began to manage the experience with more confidence and agility, the river didn’t change, but how I navigated the river changed. When the overwhelm first set in, I could not understand why helping was so hard. None of the tasks or responsibilities were difficult on their own. Yet, feelings of anger, resentment, and guilt swirled like a whirlpool that pulled me under, undermining my confidence, compassion, and core values. As Dad resisted, I insisted. It felt like we were in combat. The conflicts wore down my resilience. I was angry that I was angry. I wanted to navigate this river and steer this raft rather than be tossed around at the mercy of the next clash, resistance, or broken system.
When Winning is Losing
Dad and I argued over driving, medication management, ladders, the stove, skydiving, his knee surgery at 97, and even blueberries. While I learned lessons from each skirmish, the blueberry battle was a turning point. It was amazing what havoc could be wrought by a resealable bag of blueberries; I was ready to die on Blueberry Hill. Stepping off the battlefield, I understood more clearly when winning was losing, and I permanently put down the battle armor. I focused on big-picture objectives such as maintaining relationships, helping Dad process his history, creating a peaceful environment, and getting to win-win. By releasing control, I gained control and began navigating.
Navigating
I dissected the emotional challenges and studied tactics to counter each one. These tactics became strategies that I subjected to trial and error. The strategies included establishing routines, setting boundaries, cultivating compassion, forgiving myself and others, accepting the role, accepting help, letting go of expectations, and changing how I viewed obstacles. Through this new lens of acceptance, I discovered when losing was winning. A shift in perspective swung my attitude from frustrated to empowered. When we faced a new obstacle, I viewed it as an opportunity to improve our situation.
Sometimes the obstacle is in the way, and sometimes the obstacle is the way. Is it stopping us or showing us which way to go? Ryan Holiday, The Obstacle is The Way Appreciating that we grow stronger as we navigate our caregiving journey, I recognized that within each struggle, I had the opportunity to develop skills and perspectives that would help now and beyond caregiving. The challenge was to pace myself, figure out what worked, and then figure it out again as the circumstances changed. I explored self-care and how it fit into this new reality. Journaling and counseling became my methods of venting. I replaced my non-strategy of wondering and worrying about what was around the next bend with creating an itinerary, planning, and preparing for the future.
A Sustainable Caregiving Foundation
As I continued to learn more about each strategy to manage stress, I combined the strategies. When the strategies began to work together, they began to work. Because challenges and needs were fluid and changed from day to day, sometimes from hour to hour, strategies and solutions had to be fluid. What worked one day to manage stress or circumstances didn’t always work the next day. As I learned to modify my core set of strategies to fit the current situation, I was able to make the adjustments more quickly. The fluid-meets-solid, sustainable caregiving foundation for well-being was formed.
The journey became an adventure, a meaningful pilgrimage, and a rite of passage. I organized self-care activities into routines, including sleep, nutrition, meditation, and exercise. I set boundaries to protect the routines. These combined strategies allowed me to focus on my well-being, replenishing my compassion reserves and restoring my capacity for compassion.
When I reconnected to compassion, it was like putting on glasses with a new prescription, but instead of seeing things clearly again, I was feeling things clearly again. I found previously elusive gratitude. Forgiveness freed up my thoughts to focus on love. Meditation and exercise left me feeling refreshed, reenergized, and at peace rather than frazzled and frustrated when I could not calm the negative thoughts. I found a counselor who was a good fit, and I felt empowered by the sessions rather than suffering from a vulnerability hangover from the lack of validation. I looked for more ways to accept help and used the added time to focus on my well-being. Walking the path with folks who could share the load literally and figuratively lightened the burden and offered gifts to everyone involved.
Parting
The strategies helped me navigate, but the caregiver river continued to flow, and obstacles and challenges were around each bend. Dad’s increasing anxiety over the progression of his lung disease became all-consuming and began to take over my thoughts as well as his. I worried about him worrying.Realizing that he needed help, and I needed to learn new skills and set emotional boundaries, I contacted our hospice social worker, and we devised a plan. We organized a visitor to answer his questions and listen to his concerns. I learned how to engage with Dad to validate his fears and then turn his attention to other topics. Dad passed suddenly, six weeks after his 99th birthday.
Our Goodbye
An avid painter, he was painting the afternoon before he died. He enjoyed his 3 pm gin while we chatted. Our afternoon sessions allowed us to step back into our father-daughter roles, where Dad relayed memories from his days at sea during WWII or his life growing up on a farm. The morning he passed, Dad made his bed and morning coffee. He watched Mass, and then we switched the station to his favorite music, big band. My husband and I could see that Dad was in distress. The nurse came. Dad thought he was just having a bad day.
The Same Destination
Many months before, when I asked Dad what he would consider a good death, he replied, “Dying in my sleep.” That’s not how it was meant to be, and I will forever be grateful that we had this last morning with Dad and thankful that we were with him when he transitioned. We are all on a journey to a common destination, end-of-life, and we were helping Dad, who was further along on his journey. This perspective helped me pivot mid-journey to maximize memories and, in the process, minimize stress and regret and create a more meaningful experience for all of us. Now, that was a win-win.
Your journey
Like me, you might ask yourself, “How long can I keep doing this?” Sustainable caregiving is about developing the strategies necessary for you as the caregiver to continue to provide care to your family member as long as required. Sustainable caregiving will look different for everyone but has one thing in common: Sustainability will enable you to continue to have a good quality of life when competing priorities conspire to place your needs last.
For example, transitions come fast and furious, and while you may not know what is around the next bend, a stable foundation of strategies will help you navigate the transitions with confidence. Sustainability requires that we manage legal matters and financial resources, which may be limited when the time we spend caregiving is time spent away from a career. We can identify the activities that help us stay healthy and thrive: exercising, spending time in nature, reading, listening to music, or watching a favorite show.
Our physical and emotional well-being benefits from doing what makes us feel alive, whole, and different from how we feel in our caregiving role. Just taking time to breathe can feel like an indulgence when we are navigating rapids without a raft. Yet, these simple pleasures that reconnect us to ourselves are crucial to finding and appreciating calm waters.
Validation and empathy
Being a caregiver is lonely. We are often isolated from friends because we are too busy to join them, and they genuinely don’t understand the stress. Trying to explain what we are going through is like trying to explain why we don’t like a particular food. If the listener can’t relate, they can be a bit judgy. Often, not even our healthcare professionals get it. A doctor, when I shared that I was stressed due to Dad’s willful ways, asked, “Can’t you just let it roll off your back?”
A therapist, who I was seeing due to caregiver stress, asked, “You do know that you are in this situation because you choose to be?”. I say asked, but these were rhetorical questions without any attempt to understand my experience. If we can’t receive compassion from those paid to look after our well-being, then it is no wonder that our friends and family members struggle to offer us the validation and empathy we desperately need.
Lessons learned
Along the journey, I learned that it is not possible to exert control over the uncontrollable. The constant effort is self-defeating and unsustainable. Asking for help is a sign of strength rather than weakness. Acceptance leads to sustainability. Acceptance includes acceptance of the situation, acceptance of limitations (yours and others), acceptance of the systems, loss, help. Time away to recharge is crucial. It might have been anything from a morning run to a weekend music festival, but looking forward to something meaningful kept my head above water. Making time to enjoy a bit of the previous relationship we had as father and daughter was challenging but well worth the effort. Caregiving can be sustainable with the right tools, strategies, and support.
Navigating the Caregiver River, The Book
I wrote Navigating the Caregiver River as a lifeline for fellow family caregivers.
Part I
In Part 1, I share the six strategies that helped calm the emotional storms. These strategies include acceptance, setting boundaries, cultivating, and practicing mindfulness and compassion, with an emphasis on self-compassion. Also included are redefining self-care, journaling, establishing routines, and how to create a support system by combining the strategies that work for you. These are now the 12 Sustainable Caregiving Strategies.
A caregiver support system integrates your values with activities that support those values. The support system sustains you on your caregiving journey. Just like rivers are managed with dams, riverbank reinforcements, and reservoirs to support irrigation and prevent flooding, erosion, and sediment build-up, we can manage our environment by establishing a system of protections that support our fragile caregiving ecosystem.
To develop your system, determine what components and strategies will help you stay afloat. Which practices keep you moving confidently through the rapids toward calm waters, and which self-care activities calm the inner storms? Trial and error is a necessary part of this process as you assemble your personal support system. Consider setting aside rather than discarding the strategies that do not currently serve you because they may fit in the future. When you have identified the core components and understand how they work, you can observe how they work together in your caregiving environment to provide the best level of support.
Part II
In Part 2, I share strategies to manage the more practical matters, such as knowing when to get more involved in care, planning, and preparing for the conversations that create the logistics foundation. The legal, financial, and medical components can be complicated. Discussing end-of-life wishes can be uncomfortable and emotional. Communication about care can quickly become combative. Beginning with the end in mind will help you determine the objectives of your caregiving journey and help you stay focused on the goal so that the collaborative outcomes are win-win. I discuss some solutions to the more minor challenges and what it was like to clear the more considerable hurdles, including driving and medication management. I felt like I was dogpaddling in the deep end during the first few hospitalizations, and the lessons and strategies I learned during the crisis were invaluable.
In Conclusion
Like paddles that work best when synchronized, the strategies synchronize to support you and your unique circumstances. When the strategies work together, your raft will be stable and move with fluidity and momentum, using the current to navigate obstacles and cruise through the rapids. When the strategies are out of sync, the journey will feel turbulent, and the obstacles will throw you off course.
Your journey to sustainability will look different than mine. However, sharing my search for strategies can help you find yours more quickly. My story may offer hope in what can feel like a hopeless situation. The stories and strategies for a sustainable experience apply whether you share a residence with your care recipient or live minutes or even hours away. As you stock your life raft with sustainability supplies, I hope you will begin to navigate your journey empowered with skills and purpose. You might even be able to reach over the side and pull another family caregiver on board and help them learn how to navigate the caregiver river.
For more on the strategies that can help you confidently navigate your caregiving journey, check out Navigating the Caregiver River: A Journey to Sustainable Caregiving and 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.