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It’s our word of the New Year

I’m on my multi-week “shift” of overnights with my dad. Thanks to wonderful care (from his caregivers and hospice team), he doesn’t seem uncomfortable, but he continues to simply shrink. He barely eats or drinks anything. He doesn’t speak. He seems to understand what we say, but it’s impossible to know what he understands. Is that recognition in his eyes when someone he used to (?) know enters his field of vision? Who knows?

None of us: my sister, the caregivers, the hospice nurses, me – can figure out how he’s still alive, to be quite blunt. His body just keeps ticking.

He’s gaunt. His cheeks and temples are sunken, as is the skin around his collarbones. His hands contract into bony fists. He looks positively skeletal, and yet, still he lingers. It’s hard not to wonder when this will finally, hopefully peacefully, end.

In addition to the hospice nurses coming two or three times each week to check on him, I’ve now begun tracking his pulse oxygen levels in the morning and at night before bed. (Or, I should say, “lights-out” rather than “bed,” since that’s where he is, every minute of every hour of every day, seven days a week.) I’m straining to see some other indication of decline. Some sense of when he will truly rest.

My sister asked me how he was doing the other day. My reply: “Dad’s . . . dadding.”

Hard, but not really that hard

Because he usually seems comfortable, being a part of this – watching this infinitesimally slow process – isn’t as difficult as you might think. I believe I’ve said it before: he is easy. If mom were a fabric when she was around, she’d have been something like an accordion pleated silk. Absolutely lovely and beautiful when things were “just so,” but a high-maintenance challenge. Dad, on the other hand, is, and always has been, more like cotton: reliable, simple, durable. He makes zero demands beyond those dictated by his physical body. He doesn’t exact the same psychological toll on me (and, I think, my sister, too) that our mother could. At least it doesn’t feel like he does.

There’s just so much less to think about with him. No worrying about what might upset him. About deciphering what he’s trying to say. About keeping him from wandering off at night. I do have to do periodic and frustratingly regular battle with his doctor’s office whenever it’s time to renew his pain patch prescription, which, by the way, is unconscionable, but that’s the worst of it.

Living in limbo

By the same token, though, I find that while I can function and do day-in-day-out activities, it’s impossible to lift my head up to look much farther into the future to consider what might be next for me. There is a growing part of me that is chomping at the proverbial bit to do that. For now, though, I find that I just can’t. I don’t possess the capacity to focus on anything that big. I can’t imagine what kind of future commitments I’ll be capable of making.

I feel like I have just one job to do until he’s finally gone, and that is to make sure all his needs, simple and largely predictable as they may be, are met. That the finances are looked after; the bills paid.

Chop that wood; carry water: the Zen of not knowing

There’s a largely rote simplicity to my responsibilities right now. I keep reminding myself, as boring as they are, to find meaning in them; to make a meditation of them when the boredom grows; to take joy in their completion.

It’s hard to be at peace with not knowing what dad is really thinking or feeling. But there’s nothing to do with or about that. I resolve to just be there for it. I show up every night. I give him his medicine. I unfurl his contracted fist to take his pulse oxygen. I sit with him; stroke his hair; kiss him goodnight, tell him I love him. I peek in on him throughout the morning to see if he’s awake; squirt medicine droppers of water into his mouth if he’ll take them. Take his pulse oxygen again. Let him sleep. Update the caregiver when she arrives.

I channel my inner Van Morrison.

Occasionally I slip into worry that I’ve lost myself over these past four years. I can no longer define who I am by my career, as I used to. This experience – being the steward of my parents’ decline – has changed me and the trajectory of my life in profound ways, and I don’t know how to feel about it.

Most of the time I’m grateful for the change. But it’s really difficult, as this phase of my life seems to be creeping toward its conclusion, to reconcile who I was with who I now am, and to not be capable of defining what I will do with that knowledge in the “after.” Now, every time I think about the fact that I haven’t figured out the next thing, I’m trying to treat it like it’s its own journey: learning to not do. Learning to wait; to mark time; to just meet whatever comes up; to not judge myself in the process of not doing; to be okay with losing myself. And, for now, living in the “sound of one hand clapping.”

1 Comment

  1. Beautiful post sis. I just love this so much. Made me cry and I love how you captured the essence of our folks and this particular time in our loves. xoxo

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