Lessons about the fortitude of family caregivers

According to my mother, I made sure she was being “kessul” (careful) during her pregnancy with my brother.

I wasn’t thrilled, however, about sharing the spotlight with baby Paul. Thinking outside the box, even then, I asked sweetly to push Paul around in the buggy. My folks, weary from parenting a newborn and a somewhat jealous toddler, eagerly agreed. After Mom carefully situated Paul in the buggy, I strolled around inside our compact house, piling one doll at a time on top of that pesky intruder until he was out of sight, if not out of mind.

Needless to say, that didn’t go over particularly well, but it did spark an interest in caring for others. From tending to baby dolls and pets to babysitting and counseling summer campers, my decision to become a special education teacher was a natural progression.

Most of my “special” experiences were with children who had cognitive challenges. My teaching assignment, however, was kindergarten in a self-contained school for students with multiple diagnoses. I loved that school. My students were adorable, and the staff was exemplary. Then, during my sixth year there, I shifted to skilled nursing. My focus changed from academics to tube feedings, suctioning, charting seizures, positioning, a lot of guesswork, and even more prayer: teacher and caregiver.

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Caregiving to the very end

Shortly after my husband, Randy, and I moved our family to the North Carolina mountains, we welcomed a surprise baby, Jeffrey. His siblings, Matthew and Katie, doted on their sweet baby brother. At 2 months old, Jeffrey was diagnosed with SMA.

Thrust into nurse/mama mode, I scoured the internet for fellow SMA families and alternative treatment options. My skilled nursing experience at the Brockman School, especially the suctioning, was a godsend. When our last gasp for a miracle bombed, SMA floored the gas. In the blink of an eye, Jeffrey was stuck on a suctioning and morphine roller coaster. As the protocol’s efficacy waned, I knew Jeffrey had had enough. Mustering remnants of fortitude, my crushed mama heart gave him permission to go on. Two breaths later, he did just that.

Caregiving sometimes means letting go.

Turning it over to others

When my father’s health began failing, Mom insisted on caring for him by herself until his final few days. So, after Dad’s death, when Mom herself began requiring more supervision, due primarily to dwindling vision, I braced for battle. Thankfully, she allowed us to ease her life as much as possible with relatively minimal balking.

Matthew and his family moved in with Nana and bought the house at the earliest opportunity. Our second grandchild, James, arrived soon after Mom settled into her new apartment downstairs. I helped take care of James, his sister, Clara, then 2, and Mom. As the grandchildren became old enough for preschool, I spent more time with Mom. Because we used to be musical partners, performing together on two pianos, we played again as long as her vision allowed. She and I visited almost every day, laughing at old memories. I helped in whatever ways she needed.

Discovering one day that she could no longer see me when I was 3 feet away was sobering. I prayed that she’d “hop the train” (her words) before she lost all her vision. She hoped that COVID-19 would be her ticket out. She worried that I was doing too much for her. I worried I wasn’t doing enough. I also prayed that my wonky hip would hold out as long as necessary. (It did.)

Prayers were answered for both of us. She ended up hospitalized with COVID-19. She received stellar treatment from caring nurses and a physician respectful of her wishes. I hadn’t wanted Mom’s final days to be spent in a hospital, but for her, it turned out to be the best. She finally stopped worrying about how much I was doing.

Caregiving sometimes means relinquishing the reins.

Self-care is also caregiving

I’ve been lucky when it comes to sickness, but I’ve also had my share of crazy stuff: bizarre allergic reactions and an extremely ruptured appendix, for starters. My teeth, eyes, and ears are checked regularly, and my chiropractor is trying to appease a cranky sciatic nerve. I’ve had two orthopedic surgeons. Paul — the baby buggy survivor and a physician — tended to mundane nuisances. Consequently, I hadn’t bothered finding a primary doctor. Upon Paul’s partial retirement, I procured one.

I morphed right into an adult on the first visit, agreeing to three big-people exams, including a Pap smear on the spot. I sailed through that and had a mammogram a few days later. Bringing up the rear, so to speak, is the colonoscopy, which is scheduled for after Thanksgiving.

I also recently had my first visit to a dermatologist. The reason for my visit was spots on my arm and face; I was totally unprepared for a total body scan. I was a trooper there as well, relieved that I’d worn good underwear.

At 71, I’ve finally recognized that it’s not only OK to focus on myself, it’s essential if I intend to be helpful to others.

During National Family Caregivers Month, please remember to take care of yourself, too.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.