Caring for a parent, family caregiving, in-home care

Staying the Course

“Go home the long way, Daddy,” my sisters and I pleaded when we pulled out of the church parking lot at noon each Sunday. Or maybe it was just me who was loathe to return to the humdrum of home and more hungry for a change of scenery than for Sunday dinner, which more likely than not was on a timer in the oven. Sometimes Daddy would oblige, and I would lean back in the seat and look out the window as we wound up and around the backside of the hill and arrived at our driveway fifteen minutes later than had we taken the direct, five-minute route.

Years later, as a stay-at-home mother, I still liked to hang around talking to friends after church, putting off as long as possible the too-familiar landscape of preparing lunch, helping with homework, doing chores. My children did not share my childhood passion for “the long route,” they just wanted to be home. I suspect the same could have been said for Mama back then; was she anxious, I wonder now, to be back in the haven of her kitchen taking care of her family? No one is more surprised than I to be back in that home and in that kitchen, that has belonged—and still does—to my mother for so many years. But here I am. After living in eleven homes since college graduation in 1974, in four states and six towns—bouncing from one side of the continent to the other and back—perhaps I am finally home for life.

I twice promised “until death do us part” and then parted after emotional death. And now, even though no vow was made before God and witnesses, or even said out loud, I know deep down in bones grown strong on this piece of land I’m not leaving this relationship until physical death completes it. I will stay the course even though it’s hard living with my mother. Though I chose to commit, I had no part in choosing this partner. In some ways it’s like living with myself—and I’m not always happy with what I see mirrored. In other ways Mama is so alien to who I am that I wonder what planet I’m on and how I possibly could have slipped from her womb.

I have not lost the mother I once knew, unlike so many children who care for a parent who has disappeared into a world of dementia that locks their child out; instead, after so many years far away, perhaps I am just now knowing her in the time that has passed since our parent/child relationship. I must reconcile myself to constraints over which I have no control, no bargaining chips. It is not like parenting a child, or traversing a relationship with a healthy peer. I can’t make Mama be cheerful when she is determined to be woeful. I can’t restore her vision, and it is on a gradual but swift decline, picking up the pace like a rock skipping down the mountain. It is the third partner in a ménage à trois.

Caregiving one’s parent was once as traditional a woman’s role as mothering—and still is in other cultures—and had more company and understanding than it does now. It was simpler then, when death, whenever it came, was treated as part of life; when the medical profession didn’t butt in and people died without intervention when they could no longer live. There is no series of books called “What to Expect in the 98th Year” and beyond. The closest thing are the memoirs of those who have gone before me, and I read them voraciously, collecting scraps of information that may be useful now or in the future; but there is no normal.

Mostly the trail down the backside of the mountain is a gradual decline toward the valley. If we are lucky, once in a while the trail flattens out and is cushioned by a blanket of fir needles; other days, without warning, we slip and slide down a path that may be muddy, covered in shale, or full of ruts. At any moment we could come around a curve and find the trail washed out, requiring all our wits to traverse a pathless terrain. And all the while not knowing if the final cliff that will require wings for passage—when Mama will have to travel on alone—will show up tomorrow, or next year, or still be many years away.

This stretch of my life is about the day-after-day walking along the path. I stumble a lot, and I rage, and I say I can’t keep going. And then I regain my footing and keep going. I struggle to feel like an active participant in the world, with no one expecting me to show up for work—or at church for that matter. I content myself with a change of scenery whenever I can sneak it in. I repeat the mantra: “Please forgive me. I forgive you. I forgive myself. Thank you. I love you.” And we will stay the course, Mama and I, until finally there is “goodbye”: she because she has no choice, me because I do. I will be the constant in whatever time she has left; and it will be imperfect because both the trail and the travelers are imperfect. It’s okay with me. It has to be.

Ten thousand flowers in spring, the moon in autumn,

a cool breeze in summer, snow in winter.
If your mind isn’t clouded by unnecessary things
this is the best season of your life.  —Wu-Men

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