Shield HealthCare 2017 Caregiver Contest Grand Prize Winner | Sara L.
Sara is a mother of two beautiful girls and full-time caregiver to her youngest daughter, Jane, who has a genetic disorder. Sara loves spending time with friends and family and exploring the parks, trails, and mountains of Colorado. After receiving the email informing her of her win, Sara wrote, “Wow! Thank you!!! That is so exciting! I am so touched that you all take the time to recognize and encourage caregivers. It is very kind.”
What advice would you give a fellow caregiver?
My daughter Jane is eight years old and has a genetic disorder that severely limits her brain function and causes her to have seizures every day. She requires help to do all activities of daily life. As caregivers, you all can relate to the tragic and chaotic yet beautiful journey we have been on with her for the last eight years. In the midst of many continual mistakes, we have learned how to meet her physical needs, decipher her yells, take care of ourselves, and balance life. As I think back over those years, these are the few things I wish I had done from the beginning.
This is my advice for you and me both.
Take the time to fully enjoy moments. I can get easily overwhelmed by lists of appointments, coordination of therapies, endless paperwork, and Jane’s next urgent need; but I am filled with joy whenever I take a minute to admire Jane’s resilient smile. Pausing to do something like hold her hand or sit with her in the sunshine fuels me to do everything else.
Be honest. For Jane’s first few years of life I felt the need to put up a strong front and always tell everyone I was okay. I thought that, by so doing, I was nobly sparing others the burden of hearing about my challenges. I have only recently experienced the relief of being heard and understood. Talk to a friend. Create something to express yourself. There is joy in not feeling alone, and defining feelings helps them seem manageable and understandable.
Work to set up respite. For years, I didn’t trust anyone else coming into my home and taking care of Jane, and I put off filling out the stacks of required paperwork. But it is worth the effort. Get a latte and spend the time to do the paperwork. Trust your gut feeling about each respite worker, and do whatever it takes for you to feel comfortable leaving them with the one you care for. Stay with the workers for the first few hours, interview them, and train them. And then leave. Run in and out of stores without regard for accessibility. Sleep. Be restored.
Celebrate effort instead of success. I have decided to stop waiting for monumental moments to start celebrating. Jane may or may not ever walk or say her first word. If she does, I will be elated! But for now, I squeal when she smirks and moves her foot in her walker. I am grateful when she lifts her head to help me get her shirt on. And I laugh when she abruptly kicks me to say, “hi”. An appreciative perspective creates joy and contentment for her and for me.
Caregiving can require heroic effort, but I hope these four ideas will help lighten your burden and bring joy to your life. Set aside the to-do list and spend a moment doing something you enjoy with the one entrusted to your care. Find a way to tell people about the details of your life as a caregiver and how it feels to expend so much effort to meet someone else’s needs. Take a break. And appreciate daily accomplishments. And then, ultimately, I hope you and the one you care for will benefit from a renewed state of mind!
Click here to return to the contest home page and read more winners’ advice.
Winners were selected by a panel of independent judges, including: Sandra Mitchell, Award-winning KCAL 9 news anchor and breast cancer survivor, and the Landers family: actor and comedian David Landers (“Laverne & Shirley”) who is living with MS, his wife Kathy and his daughter Natalie (“The Middle”). Click here to learn more.
