People say all kinds of nice things when they hear of the caregiving I’m doing for my father, expressing empathy – many others in my community have been down this path already – and passing on good wishes. It’s the kind of conversation that can be tough for that other person, because he or she wants to find words that will have impact and that will pass on the emotion they’re actually feeling, emotion that means so much more than any words can express. So, I try to tune out the actual language and tune into the intended meaning with thankfulness for what I know is heartfelt concern.
However, one phrase that comes up in these conversations every once in awhile still can stop me short: “Looking back on this, you’ll always know you did the right thing for your father.” Despite the good intent, I find this sentiment just a little jarring every time I hear it, and my reaction is all focused on one little, three-letter word: “the.”
This just may be one of those situations where those who aren’t editors look at those of us who are editors and roll their eyes. Spend time in a Chinese restaurant with just about any magazine staff as they gleefully dissect the inevitably misspelled menu and you’ll know what I’m talking about. But words do carry meaning, and that choice of the definitive “the,” instead of the indefinite “a,” almost always gives me pause, for a couple reasons. For one, it assumes there is only one right thing I could be doing for my father, and, second, it presupposes that what I’m doing is, in fact, that one right thing.
Caregiving, like child raising, is an area of the human experience that is rife with judgment – almost everyone has an opinion of what makes a good parent or a good child, and both interpretations generally revolve around the sacredness of sacrifice. Read through the comments in just about any blog geared to those caring for aging parents, and you’ll see just how strong this urge to judge can be. I regularly check out the New York Times blog The New Old Age, which covers the complexities and layers of experience involved in caregiving decisions. Some of the experiences recounted in both postings and comments are, simply, heartbreaking. Children leaving careers – and paychecks – to become full-time aides for their parents. Children risking their own health – as parents live longer, caregiving children may, themselves, be pushing into the elderly category – to keep parents out of nursing homes. Multi-generations living in two-bedroom apartments, crammed with medicine schedules and medical equipment, and getting by on welfare and Medicaid.
My situation is a dream, by comparison. My father has a checklist of chronic health problems, but dementia – thank God – isn’t one of them. I have a home that allows for at least some privacy and personal space. I work independently, so my schedule is more flexible than any hourly worker’s would be when it comes to scheduling appointments and managing medications. This doesn’t mean my caregiving isn’t hard work, but it does mean this effort is, to a large extent, manageable.
However, the fact that I’m doing a right thing by taking care of Dad at home, doesn’t mean another family, with different parents and personal challenges, would be doing the wrong thing to consider an alternative solution. Not everyone sees things this way, though. There’s a prevalent, black-and-white view in our society that attributes the mere presence of nursing homes to a failure of families to take care of their own. Adult children should just suck it up, because, after all, that’s just what their parents did when making their own child-raising decisions. This outlook ignores any number of issues, and it is causing real damage to lives and families, all because of the sense that it’s shameful to seek help in managing an unmanageable situation.
And, in fact, home placement simply isn’t the right solution for every aging parent. I’m in a caregivers’ support group sponsored by my town’s Council on Aging, and the other participants all have spouses or parents with some form of dementia. Some of these loved ones are in assisted living or nursing home residences, and the rest probably will be before too long. Most remain in hale and hearty physical health, while their mental capacity is draining away, day by day. I hear the stories of lost wallets and wandering and verbal abuse and incontinence, and it becomes obvious to me that good caregiving in such a scenario has to include at least a consideration of outside placement, for the health and welfare of the loved one, not just the sanity of the caregiver. (And, as an important aside, I’ve also learned that caregiving does not end at the nursing home admissions desk – caregivers must learn a whole new set of proactive skills once that threshold has been crossed.)
Which raises my second objection to that definitive three-letter article: just because my situation is manageable now, doesn’t mean it will stay that way. Dad’s at a significant risk for a stroke or heart attack, either of which might not kill him, but, instead, leave him mentally or physically incapacitated, or both. At that point, my one-man caregiving band easily could become overwhelmed, even with home-health assistance, making a nursing home placement the best option for meeting his medical needs. What will those who say what I’m doing now is the right thing say then?
I’m really not trying to force yet one more layer of political correctness into our interpersonal interactions with these thoughts. Just as I’m perfectly happy to keep my amusement at goofy Asian-menu syntax to myself when out of the presence of like-minded grammar critics, I’m perfectly capable now of shaking off my initial snarky reaction to what I know are good wishes when I hear them from others. But I think we need to strike that definitive “the” from our broader discussions of right approaches to today’s complicated challenges. Such simplistic judgments simply aren’t appropriate to the plurality of problems our caregivers are facing every day.