Our loved ones have delusions, but caregivers have some too. It’s possible that we need them to keep ourselves afloat.
When I began to take care of my mom, I started a careful record of her symptoms and recorded changes in her cognitive skills. Reading over my notes from a few years back, I see now how determined I was to focus on what she could still manage while minimizing what she lost. Part of me was unwilling to believe that the disease would progress. Another part was determined to use every avenue of health maintenance to keep her symptoms at bay. We tried chelations, nutritional supplements, exercise, love…. The illusion that I could keep her stable was like some daily vitamin I took to fuel my caregiver routine.
Now I feel a strange nostalgia reading over my old notes. They describe days when Mom could still make her breakfast or put on shoes. It seems like forever since she could cut her own food, but the pages remind me that there was a time when handling a knife was still within her repertoire. I desperately wanted to help her hold onto those skills. The crazy notion that I could do it kept me going.
My responsibilities have changed since then. Now my sister is doing more direct care for mom. This shift has given me a chance to reflect on the ways that caregiving has changed my life. As I observe my sister, I see that she’s doing exactly what I did: digging her feet into the sand, determined to keep the tide from sweeping good moments away. I don’t think this kind of perseverance is just some family trait. I believe it’s a quality caregivers need in order to survive. The caregiver job description might read something like: Must be diligent, a bit delusional, and able to stand upright as the hurricane blows around you.
It’s easy to forget how many fathers and sons are immersed in the dementia epidemic. The longer female lifespan gives women more time to develop dementia and, around the world, most caregivers are also female. But the Alzheimer’s Association estimates that the proportion of men serving as caregivers for spouses and other family members has doubled — from 19% to 40% –in the past 15 years.
Men in the caregiver role share many of the same burdens as their female counterparts, but their lives are complicated in different ways. For example, more male caregivers are working outside the home. A report from the National Caregivers Alliance suggests that though men and women devote about the same amount of time to caregiving, 82 percent of male caregivers hold full-time jobs, compared to 70 percent of female caregivers. Since most male caregivers are fully engaged in the paid workforce, more than two thirds of them have to request changes to their work schedule such as going in late, leaving early, or taking time off.
Their wholehearted embrace of technology gives men a small advantage: they’re more likely to use the Internet as a caregiving resource. But since they spend about 19 hours a week on caregiving activities outside of their jobs, these guys are shouldering a lot of weight.
When writing about men who give this kind of support to a wife or mother, a few stellar fellows come to mind. Their contributions as fathers, sons and caregivers add infinite value to their families. They are caring people, to be sure. But they’re also tenacious and when needed will use their horns to protect the people they love. I sincerely hope that someone made them breakfast today and provided at least one hug. Caregivers shouldn’t have to forage for food or appreciation. To the men among us: Happy Father’s Day!