Keeping the scales of life in balance is a tough chore for anyone. I am a spousal caregiver for my husband who is a ventilator-dependent quadriplegic as a result of a spinal cord injury. His medical needs are complex, and meeting those needs on a daily basis requires an enormous amount of my time and energy. My husband and I are parents to our young daughter, and as I am the able-bodied parent, the hands-on parenting duties fall to me. In addition, I also work part-time from home as the content manager for AbleThrive, a website that focuses on helping people live well with a disability.
My scale of life is constantly in motion.
Very rarely do things ever equal out. If they do, that quiet harmony doesn’t last long. Because, let’s face it, caregiving, especially full-time caregiving, is an all-consuming endeavor. It’s a 24-hour shift with no time off. And I’ve learned that while caregiving is something I do 24/7, I also need to make time for other areas of my life. One way I do this is by sticking to a routine. While my method of keeping things on track certainly isn’t perfect, it definitely helps to ensure a couple things: 1. my husband’s health is adequately maintained; and 2. areas like parenting, work, even some down time get to make an appearance in my otherwise caregiver-heavy life.
We’ve changed and honed our routine over the last few years, and no doubt that schedule will morph again in time to meet our evolving needs. But here’s what a current, on-schedule day looks like in a nutshell:
Mornings: Hands-on caregiving (like trach care, breathing treatments, skin checks, bladder management, personal grooming, etc.)
Mid Morning: Work / Administrative caregiving (like managing medications, paying medical bills, handling insurance matters, and ordering supplies)
Noon/Early Afternoon: Work / Hands-on caregiving (like getting my husband dressed and into his wheelchair)
Late Afternoon/Early Evening: Family / Parenting Time
Late Evening/Night: Hands-on caregiving (like getting my husband back to bed, more breathing treatments, bowel care, and bedtime routine)
Of course there are other tasks that float in and out of our schedule, but these are the things we accomplish every day. And when everything goes according to schedule, things work pretty well.
But life's not perfect and that's ok.
But when you live with and manage a chronic condition, life doesn’t always line up perfectly with a laid-out plan. Sometimes things derail. And that’s when the life-balance scale goes bonkers. For example, a couple months ago my husband developed pneumonia. In a matter of minutes, our well-oiled machine of care completely fell apart.
It was as if the wheel of life suddenly landed on “caregiving” and lights started flashing. All of my attention was shifted to my husband’s care. Two breathing treatments per day was bumped up to six. Every two hours, round the clock, I was turning him on his side percussing his back to break up the gunk in his lungs. The suction machine was in use every hour. My days and nights were filled with antibiotics, temperature and blood pressure checks, and the deep worry that accompanies every caregiver’s existence.
For nine days straight, my caregiving weight was bottomed out. Family and parenting time suffered as my husband didn’t even leave the bedroom while he was sick. One-on-one time with our daughter was cut short. Work was sporadic at best. And the guilt that is created when life’s scale is out of balance hung over me like a dark cloud.
But ten days after the first sign of pneumonia, things slowly started inching back to “normal.” My husband was starting to feel better. I didn’t have to constantly hover over or monitor him. We were able to sleep through the night once more. As the caregiving weight lightened, I began to redistribute the other weights of my scale to help things even out a bit. My husband and I were both able to spend more meaningful time with our daughter. I was able to catch up on work. I even got to put some effort toward the ever-elusive “me” time. Our machine was back up and running.
What I’ve learned during my last three years as a full-time caregiver is that as long as my life scale is in motion, then things are going pretty well. But I also understand that when caregiving is a part of your life, bottoming out is inevitable. It’s going to happen from time to time. And when that happens, my goal is to simply ride it out, wait for the tide to turn, and regroup to help maintain the balance.
Ride, Wait, Regroup.
Thus is the life of a caregiver.