Caregiving is handed down through our heritage and woven through our genetics and instincts. We take care of others through different stages of life, a meaningful expression of love for family and friends, young and old. I sought out that role as a mom of three little ones.
• The Mighty’s Caregiving Toolkit
However, I never expected to be a full-time caregiver for one of my teenaged children.
“Life can change in a moment” is a common phrase, yet only some of us experience tragic events that alter literally everything. My moment arrived in the last dark minutes of a chilly spring day when I fell asleep at the wheel and nearly lost my youngest daughter, Beth. She survived with a C6-7 spinal cord injury. I quit my job at a state institution for a new one as a full-time personal care assistant.
Beth took on the world with stubborn teenage determination.
She led the way in her new wheelchair while I struggled to keep up, saddled with guilt, pain, anxiety and depression. At the time, I needed a caregiver, too.
Who takes care of the caregiver?
You guessed it. On top of caregiving — always a challenge — caregivers need to fend for themselves. But how? The responsibility of the job is often demanding, time-intensive, exhausting, and uncertain.
Beth’s first days back at home after her injury, I couldn’t sleep at night, afraid of losing her. Every morning, I worried if the day would end in the hospital. Bone-tired and deeply sad, I joined the ranks of caregivers who neglect themselves, particularly through the toughest times.
Here’s what I learned:
1. Be bold.
Develop assertiveness to better represent yourself, and to be a strong advocate for others.
Use your voice.
2. Connect.
Build a partnership with the person you are assisting based on mutual respect. Try to understand their perspective.
Empathy.
3. Prioritize.
Decide what matters most. Not everything is important.
Keep it simple.
4. Relax.
Do gentle stretching and deep breathing several times a day. Look for and appreciate the good things.
Keep it simple.
5. S.O.S.
Ask for help when you need it. From doctors, too! With family and friends, use tact and be specific, whether it’s changing sheets, picking up groceries, a meal out, babysitting, or a much-needed foot rub.
Be grateful.
6. Me-time.
Carve out a little time for a favorite hobby or book. At the rehab hospital after Beth’s injury, we read a “Harry Potter” book out loud to each other in the evenings. Create bright spots on difficult days.
Small great things.
Don’t learn the hard way that self-care for caregivers is a necessity, not an option. Give yourself the best gift: self-care!
Follow Cindy and Beth’s journey at Struggling with Serendipity (www.strugglingwithserendipity.com).
A lifelong disability advocate, Cindy Kolbe is on a mission to share the power of hope and connection with those in crisis. Her new memoir, Struggling with Serendipity, tells about the road of hope she traveled after her daughter's paralysis— from a small town in Ohio to Seattle, Harvard, Capitol Hill, and around the world. And if you never give up? Hope wins. Check out her new book at bit.ly/memoiroffer.
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