Caregiver Self-Care, Not Just One More Thing on the List

Last month we had 28 medical appointments in our calendar. That does not include the IEP and meetings for updated medical accommodations at the school, nor the medical care for the dog who urgently needed dental surgery.

I am, after the loss of my former husband a few years ago, a single and only parent; the sole source of income for our family. A mom and a caregiver to two kids (9 and 10) who have have medically complex, rare illnesses. The situation is made a bit more challenging because there are no known cures; their illnesses are unrelated and have demanded a great deal of care the past few years.

Before my kids’ illnesses, I enjoyed training for half marathons on wooded trails, hosting dinner parties, sweating in Crossfit, meditating quietly in the early morning, hiking or doing yoga with friends and trying new paleo recipes. I was for the most part, fairly healthy.

Like many caregivers of children with complex illnesses, I found myself short on time, short on money, and slowly but surely losing opportunities for working-out, seeing friends and preparing nutritious meals for myself. My time was devoted to getting my kids to clinical trials and medical appointments. I tried my best to hold anchors of childhood normalcy by making sure they got to school and had play-dates as their health permitted, while still accommodating their nutritional needs. And by reducing how much I slept, I was able continue to work full-time.

I know self-care matters. I know it matters as much as administering medications, researching clinical trials and ensuring the magic of childhood is not lost to my children.

Research and experience shows caregivers have elevated rates of  certain illnesses, increased rates of depression and are at risk for substance abuse, insomnia and weight gain. Like many caregivers of medically complex and chronically ill children, I can anticipate being a hands-on caregiver for at least another decade. The cause of my stress can be measured in years, not weeks. And like many caregivers, after two years of what felt like non-stop care-giving activities — clinical trials, weekly medical appointments, in-patient stays, lengthy procedures, missed school and work, a future uncertain with the progression of rare pediatric diseases — I found myself needing to take inventory of how I was going to take care of myself in what had become my new normal.

Medical appointments replaced lunches spent at the gym. PubMed research replaced meals with friends. Eating an apple with almond butter replaced trying new recipes using the contents of my farm box. Updating notes in the kids’ electronic health records replaced morning meditations during quiet sunrises.

I work in healthcare. I know the importance of mitigating the stress of being a caregiver through evidence-based practices that include social connections, movement, healthy nutrition and mindfulness. For me, and many others, research shows spiritual practices and/or faith can also play a role in successfully managing stress.

We have a giant calendar that charts our family’s month. Now, along with the medical appointments, prescription pick-ups, reminders about physical therapy, work travel and client meetings, there are also notations holding time for my self-care: swimming, a hike with a friend, extra sleep, a visit to the gym, time to meditate or a new recipe to try.

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Thinkstock photo by: AntonioGuilem

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