How Do We Sustain Our Ability to Provide Care?

Runaway rollercoaster

I remember feeling like I was on a runaway rollercoaster, but not exactly on it. I was hanging onto the last car with one hand, feet swinging in the wind. With each twist and drop, my grip would loosen. My situation was not sustainable. It was just a matter of time before I was flung from the train. Slowly, I got two hands on the last cart, tightened my grip, climbed in and worked my way toward the front. The view was still frightening, paralyzing at times. Steering was not an option. The twists and drops were still there, but I learned how to roll with them. Firmly seated in the front cart, I loosened my tight grip and relinquished the battle for control as a caregiver. This was what sustainability looked like for me. That process took several years of trial, error, tears, repeat. 

As family caregivers, we often ask the question, “How long can I keep doing this?”

• Sustainable caregiving is about developing the strategies necessary to continue to provide care to your caree for the duration.
• Sustainable caregiving is about continuing to have a good quality of life when competing priorities place your needs last.

Sustainability will look different for each individual and each situation. Challenges and needs are fluid and change from day to day, sometimes from hour to hour. What worked yesterday may not work today. Strategies and solutions must be fluid as well.

Survive and thrive

At the minimum, we need nourishment, hydration and rest. Those simple requirements are often not adequately met. Sustainability requires that we manage financial resources. Financial resources may be limited when the time we spend caregiving is time spent away from a career.

Beyond these basic needs are the activities that help us stay healthy and thrive. Both our physical and emotional well being benefit from taking time to do what makes us feel alive, feel whole and feel different than how we feel when we are in our caregiving role. It may be exercise, spending time in nature, reading, listening to music, watching a favorite show. Just taking time to breath can feel like an indulgence when we are in the midst of navigating rapids without a raft. Yet, these simple pleasures that reconnect us to ourselves are crucial to finding our calm waters. Surviving and thriving while caregiving requires strategy, a plan, a routine and redefining what self care looks like as often as needed.

Isolated and alone

Being a caregiver is lonely. We are isolated from friends because we are too busy to join them. When we do, they often don’t understand why we are so stressed. Trying to explain what we are going through is like trying to explain why you don’t like a particular food. If the listener can’t relate, they can be a bit judgy. We start to question ourselves and our inability to manage our emotions. More guilt.

At times, not even our health care professionals get it. My GP, in response to me sharing that I was stressed due to Dad’s willful ways, asked, “Can’t you just let it roll off your back?” My 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. Neither were able to understand what my world looked like at the moment. 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.

Sustainability strategies

Sustainability will look different for everyone and just like the challenges, will look different from month to month, day to day and sometimes hour to hour. What sustainability looks like for me at the moment involves a lot of routines that I am more or less able to keep. I get up ridiculously early to exercise and spend time with my husband before facing the reality of the day. Planning and limiting food choices minimizes less healthy last minute decisions. Here are a few strategies I have employed:

• Protein at every meal and having primarily protein snack options available to keep from getting hungry and short tempered aka hangry.
• A consistent bed time and sleep stories from the Calm app are my magic sleep solution. I’ve never heard the end of one. This app is my favorite for meditation as well.
• Help with Dad-centric chores and errands enables me get away for limited amounts of time.
• Support – I don’t have a therapist at the moment, but journal daily, belong to a relevant fb group and am fortunate to have an understanding husband.
• Keeping to routines results in more time for me.
• Self compassion and self care are priorities.

Using obstacles to your advantage

“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?” I heard this recently in a context separate from caregiving and was intrigued because the caregiving obstacles are many and if we could make them the way, then we might be onto something.

The Obstacle is the Way is a book written by Ryan Holiday. The title comes from the writings of Roman Emperor Marcus Aurelius. The book is about using perseverance and resilience to endure pain or adversity, turning obstacles into opportunities, growing stronger and tougher from the experience. It is about stoicism. YES! This is the challenge we face. We will grow stronger as we travel through our caregiving experience. We will develop skills and perspectives that will help us later in life. The challenge is to pace ourselves, figure out what works and then figure it out again as the challenges change. This book has become my life operations manual.

Things to consider as you create your sustainability flotation device: 

• Relinquishing control may feel counterintuitive when everything feels out of control, but this will put you on the long distance path to sustainability. Build and strengthen your letting go muscles and they will serve you well on your journey.
• Accepting that you need help and taking steps to get it may feel like a stumble, but in fact will be like the cool walking stick you found on the trail that allows you to finish without injury. 
• Walking the path with folks who can share the load literally and figuratively can lighten the burden and offer unexpected opportunities to everyone involved.

What I know now:

• 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. This includes acceptance of the situation, acceptance of limitations (yours and others), acceptance of the systems and acceptance of help.
• I need time away to recharge. It may be a morning run or a weekend music festival, but looking forward to something meaningful is the foundation of my sustainability flotation device. It keeps my head above water.
• Caregiving is sustainable with the right tools, strategies and support.
• Making time to enjoy a bit of the previous relationship we had as father and daughter is challenging, but well worth the effort.

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.