Caring for your Caregiver: Busting Burn-Out
Sometimes I marvel at how easy activities of daily living were before my spinal cord injury about nine years ago. Now simple tasks like exiting my bed, showering and dressing are time-consuming and require considerable assistance.
Finding good caregivers can be difficult because the work isn’t easy and Medicaid-provided services don’t pay caregivers well. Keeping good caregivers is important, and taking care of them in return is essential. Avoiding caregiver “burnout” makes keeping good care more likely.
Caregiver burnout is a state of physical, emotional and mental exhaustion brought on by providing care.
Memories of my experience motivate me to warn other families of burnout risks.
The first caregiver in my life to experience the phenomenon was my brother, who had taken on my care upon my diagnosis. The stress exacerbated his addiction issues, and he turned to alcoholism. My daughter, a young teen at the time, took on my care nearly full time, for lack of funds and a local caregiver agency. Her academic progress, social life, and worst of all mental health suffered greatly.
Burnout can lead to tension and emotional outbursts, overwhelming guilt on both sides and ultimately destroy relationships. For these reasons sometimes it’s not ideal to have a family member as a caregiver, although lack of resources can limit our options.
My relationships with my family were scarred but spared, as I opted to move into nursing facilities, eventually moving out on my own only after establishing service with multiple caregiver agencies. The agencies are located an hour away in the city, however, and only a few local caregivers are employed through them. Helping these caregivers avoid burnout is essential, or I will end up back in an institution.
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How can you take care of your caregiver?
- Employ multiple caregivers if possible
Even the best caregivers need breaks or days off, especially if they’re sick. That’s why employing more than one caregiver is important. Ask your health insurance if home health can take over a shift. Ask for 2 caregivers per shift for Hoyer transfers and showers.
- Participate in respite care
If you have a live-in caregiver, or just one caregiver who does not have a day off, you may be eligible to participate in respite care. This might look like spending a few nights in a skilled nursing facility each month or having another caregiver come in for a couple of shifts. If you’re on Medicaid you should be eligible for respite care in the event you are eligible for homecare.
- Offer support group resources
The Christopher & Dana Reeve Foundation offers free mentoring through the Peer & Family Support Program for caregivers of people with SCI or other forms of paralysis. Caring can be challenging emotionally, and talking with other caregivers can be helpful.
- Show your appreciation
Caregiving is both challenging and rewarding. Our lives work because our caregivers show up to work, and the value they bring to our lives cannot be overstated. Avoid allowing the care routine's monotony to discredit the work's value. Express your gratitude often, in many ways. Gratitude looks like thanks, compliments, and lots of acknowledgment on the hardest days. If you’re able, it may look like a gift certificate for a massage or a thoughtful gift. It can be access to the coffee in the kitchen or a surprise lunch delivered.
In the years since my injury, my life has been blessed with caregivers, from my doting daughter to dear friends, to caregivers I found on social media and paid in cash. Some have been incredible, but many burned out fast. I’ve learned to be mindful of my caregivers’ needs and observant of their moods. I’ve learned to advocate for them, their time off, and decent pay. It’s not a position I ever thought I’d be in but I’m learning to handle it with grace.
Caring for a person with paralysis truly does take a special kind of giver. Keeping them is crucial. Take care of your caregiver!
About the Author: Cassandra Brandt is an Arizona-based author and advocate for marginalized people. You can find her books on Amazon.