Remember 7th grade? Physical changes? Social and emotional upheaval? Perhaps a shift in school setting, classmates and teachers? Establishing new relationships can pose challenges or sometimes fracture a fragile ego.
Looking back, it may seem as if such dramatic developments came over us seamlessly. However, the experience may have helped us cope with other life changes down the road. In most cases, we've developed a soft skill set that allows us to deal with unpredictable conditions.
This may not be the case if you're caring for a loved one dealing with cognitive decline. If we've spent a lifetime with a parent, partner or child who's now beginning to exhibit signs of memory loss or behavioral aberrations, we're likely to stare down the barrel of a cannon that's about to fire curve balls that knock us to the ground.
Alzheimer's, which is the most common form of dementia, affects one in nine people in the U.S. over age 65. Given the cohort of baby boomers just entering this demographic, most of us are likely to know someone living precariously as the disease progresses. It’s the equal number of caregivers that’s of grave concern. Patients typically follow a mild to moderate to severe path. On average, people with Alzheimer’s disease live between three and eleven years after diagnosis. This period of time may feel like an eternity for caregivers.
In caring for my husband of 40 years, whose last five years were marked by dementia, it was easy to convince myself that I was managing when he'd ask the same question repeatedly, recount tales of a college road trip as if it were on a continuous loop, or pound wooden dowels in his garden believing they were fertilizer.
I often had to remind myself that it was not my husband, but the disease, which aggravated me. Sometimes, I was more polite than others when his behavior was so annoying. On better days, I'd ask for details of the road trip or try to humor him about improvements in his garden. Meanwhile, verbal reproaches or complaints rolled off his back like beads of water that left me sweating.
Dressing presented special problems. When I invited him to join me at the hot springs and suggested putting on his swimming trunks, he emerged with his bicycle shorts pulled up over his jeans. Coaxing him into more appropriate attire only served to pressure me forward for a calming soak.
In a recent interview, a caregiver lamented that she could never leave her husband home alone for fear of his falling or an extreme bout of agitation. “I can't even go to the grocery store or, much less, have lunch with a friend just to catch a break. I’m suffocating,” she wailed. In this case, a respite care worker might offer some peace.
Caregivers are called upon to create a safe and comfortable environment for their loved ones. Larger still is the need for acknowledging that these changes may defy efforts to control – and that the situation has virtually no likelihood of improving. Quiet resignation in the face of tragic circumstances may be easier than hard core resistance or determination to reroute the patient into more acceptable behaviors.
Sometimes, the best we can do is expect anything and accept everything.
Mary Nowotny is a freelance writer, migrating between Hermosa and Tucson, Arizona, who has learned a lot about the soft sides of old age, sickness and dying.
