Diary of a single caregiver

Grief has to be the most lonely feeling in the world. It aches, hurts in places you didn’t know existed. It makes you want to cry and you have no idea what specifically triggered it. And then on top of that, you know that even if you feel sad, you really shouldn’t feel lonely. You probably have your closest friends around you, waiting to hug you and never let go no matter what. Which makes it worse.

It’s also super personal. I guess all extreme emotions are personal, but unlike something, say, joy, grief makes everyone else uncomfortable. We all know what to do when someone else is happy. You laugh with them, give them a hug, cheer them on. You celebrate with them, and by doing so make the situation even more joyful.

What do you do with grief? Nothing. Everyone knows what it’s like to lose something. There may even be billions of people who know what it's like to lose the exact thing you lost. But no one knows what it's like to be you, and lose the exact thing you just lost, that thing that was so special to you in a way no one can truly understand.

The best thing you can do for someone else is nothing at all. Just be with them. Nothing else. And who the hell is good at doing that?

For myself, my loneliness is made personal by several facts: I’m very young for my parents’ age, I moved ‘home’ but really to a place that’s no longer familiar, and honestly my parents are really weird, and while everyone's parents are weird, it makes learning how they get old unique, and lonely.

This whole time I’ve been back, I feel like I’ve been missing something. Like I’m building a puzzle and I’m either missing pieces or the picture that I’m looking at is entirely wrong. Something about my perspective, just isn’t quite right.

But if I’m learning to deal with my own grief, I’m also learning to sit among someone else’s. As I sit next to my dad’s hospital bed, I have wonder what it’s like to slowly lose control of everything; your body, your mind, yourself.

My dad’s physical body does improve. He’s stabilized, almost off antibiotics, and is ready for discharge. I speak with a case manager about our options, including taking him home today, or sending him to a specialized nursing facility for around the clock checkups, and most importantly, physical and occupational rehab therapy.

She recommends the latter. We agree.

I take my mom to pay a visit to my dad in his new nursing facility. We’ve actually been here before, a few years back. It’s weirdly familiar, and I wonder if my dad will love it as much as he did the last time he was here.

We go into his room and pass by another man laying on a bed and a woman sitting next to him. My mom and I smile at them, and keep walking until we see my dad at the other end.

“Hi, Dad,” I announce.

He opens his eyes and looks at us, and nods.

“How are you?”

A long second passes. “Fine.”

My mom and I take a seat next to his bed. I can’t see the other man and woman; there’s a curtain that cordons off the room into two. But I can hear them talk. I assume the two are married, and they get into a bit of an argument.

“Well, it's your life,” she says indignantly.

I sneak a laugh.

“What’s so funny?” my mom asks me.

I just shake my head. It’s funny when the elderly argue, and when they’re not your elderly.

About an hour passes as I alternate between being bored on my phone, taking down some notes, and just sitting there. My mom only sits, and I wish I had a window into what goes on in her mind in the moment.

“Hey Dad,” I say, standing up to leave and leaning over so my mouth is just inches from his ear, “we’re going to go now. See you tomorrow.”

He nods slowly.

I step away, and my mom takes her turn.

“Can I pray for you?”

She doesn’t really wait for him to answer before closing her eyes and letting words tumble out of her mouth. Her prayer is very similar to the ones she prays before dinnertime so I don’t put much stock into the words themselves, but there’s something about the action itself that seems, earnest. Like she’s actually pleading with the Almighty. I know my mom cares for my dad. I don’t know exactly what drives her, and I’m suspicious of any easy answer.

An occupational therapist calls from the care center the next day. “Do you have any goals for your dad?”

I could say ‘get better,’ or even think about asking them to help my dad get back to how he was before he went to the hospital. But I also don’t know if that effort is, for lack of a better way to put it, worth it. If my dad is deteriorating, I’d hope he can do it gracefully. If he’s struggling to walk, I’d rather him learn to use a walker, than insisting on using his own two feet and always be at risk of falling. So that’s what I go with.

She agrees. And then she asks a few more questions. My dad seems reserved. Do I have any tips for dealing with him? How can he be motivated to do physical and occupational therapy?

At this I chuckle, and unload as much information as I can. My dad is grumpy. Really hard of hearing. Very easy to be agitated. Oh, and he has dementia so he probably won’t really understand you. But as for motivations, try telling him that it’d make his family happy to see him do therapy.

My advice and wisdom is promptly put to the test. We run into the occupational therapist when we go visit, exchange pleasantries, and see if my dad will get out of bed to do a few exercises.

He grumbles and growls, like a cat or something.

“Come on, John,” the therapist says cheerfully, “let’s get you out of bed.”

My dad furrows his eyebrows and almost looks like he’s going to hiss. And then he speaks much louder than he has in recent months.

“Feed me!”

I exchange glances with my mom and the therapist.

“Feed me!” my dad repeats himself.

“I don’t understand,” the therapist says.

“You need to feed me! Not you!”

“Dad,” I say gently leaning into his ear, “what do you want?”

But he just repeats himself, this time adding hand gestures. You need to feed me, pointing at himself. Not you, pointing at the therapist, and with extreme jerkiness to his motion.

“I wonder if he means he doesn’t want to do it now,” I turn to the therapist, and then sheepishly adding, “like, you should build your schedule around him…or something.”

“Okay. Well we can just try later,” she responds. “I have some time later this afternoon.”

We’re about to choose that option, until my mom literally steps in and puts her hand on my dad’s arm.

“How about now, John? So we can watch you?”

“Leave!” my dad yells, shoving her arm away.

And so we give up, the therapist leaves, and my mom and I go back to just sitting. My dad actually has a nice room. He has a TV in front of him and has a large door to his side which opens to a nice patio. Of course, he doesn’t want to take advantage of it and just wants to sit and stare into nothing.

“How long do you want to stay?” I ask my mom after we’ve been sitting for awhile.

“You decide.”

I’m about to protest that it’s always my decision, but instead I just voice the truth. “How about now?”

“No, how about at least another half hour?”

This pisses me off. It’s just like how things were when I was a kid. She hands me the opportunity to have an opinion, to have a choice in the matter, and then immediately crushes it.

“Fine.”

I sort of sulk for the next half hour. I wonder if I’m right to be angry. Or maybe right or wrong doesn’t matter here. I know that it’s not healthy to keep bottling up my anger, but I also know I can’t take it out on my dad or my mom. I’m going to need to find another outlet, and the gym right now, just isn’t cutting it. I wonder if I should get back into boxing, or drums.

When we finally do get up to leave, my mom interrupts me before we walk out the door.

“Can we come back later?”

I’m about to ask ‘What time?’ but then I know she’s immediately going to say ‘You decide’ and so I simply say, “Sure.”

I’m annoyed that I now have to build my schedule both around seeing my dad because it’s the responsible thing to do, and around taking my mom to go see my dad because she wants to even when I don’t.

I think about dropping her off when we go back in the afternoon, and leaving to go do something else. But I don’t actually know what else I’d do today, so I tag along anyway.

The therapist is back as promised, and we’re immediately back on the battlefield.

“John, I’m back!”

“Go away.” my dad sneers.

I can see the strain developing on the therapist’s face, and she pulls out the piece of advice I had given her earlier.

“Your family would be very happy to see you do therapy, John.”

“Am I happy!?”

Like throwing pebbles at a tank. Pouring grease on teflon. Trying to reason with a three year-old in the midst of a tantrum.

So much for sage wisdom.

I mean, in some reality, if no one has ever paid your opinions any consideration or has always demanded you live your life according to what makes other people happy, sure. That response seems entirely appropriate.

But this is literally the opposite of everything I’ve known about my dad since I was born. And so this whole thing is bullshit and I’m about to tear into my dad. But I don’t. There’s still something that holds me back. Maybe the fact that the therapist is still standing right next to us.

“John,” my mom begs, “please.”

There’s a stillness in the air. And then my dad jerks himself forward.

“Hey-unh! Do whatever you want to do!” he yells, enunciating every syllable.

“Great!” the therapist cheers.

The next thirty minutes are incredibly tense, as the therapist helps my dad into a wheelchair and wheels him into a special room with exercise machines specifically for rehab. I both want to watch because I’m curious what he’s doing, but I also really don’t want to because my dad just stresses me out.

“Does this surprise you?” I ask the therapist after we’re all done and she’s about to leave.

She takes a moment to parse out what I’m really trying to ask. “No. Other emotions maybe. But not surprise, no. I hope that's reassuring. Even if in a twisted way.”

I nod. “Of course.”

I can tell that even though it’s her job, even though she doesn’t know my dad, it does seem like his antics have dug under her skin. Maybe because she knows this is the first of many days with him. I wonder how she—or any of the staff—handle this en masse.

It's hard to see my dad be so rude to people and for them to have no choice but to accept it. I know that I can continue my tactic of being a shield, and telling others to ignore him, but I feel at a loss here and sense that I’m going to have to trust others to shield themselves from him. Maybe it’s not my responsibility, but he’s my dad. I don’t know how to let that go, and god dammit, I wish I could.

“That’s just how he is, Daniel,” my mom says when I complain about my dad. It always strikes me, how my mom defends my dad, resigning herself to this truth, but only sort of. Because she’s the one who has always, and still, pressures him the most to be something else.

If the time at the care center is festive and rife with mental games, the time at home with my mom is the polar opposite. The house is dead quiet, and neither of us really does anything with each other. Except for dinner, and except for the usual walk around the park.

“What should we do?” she asks on one of our walks.

She means my dad, his situation, and the future. I have a feeling she’s doing her usual thing, asking for my opinion but having already made up her mind. My brother and I have brought up the trifecta of options for her for some time now, and so I just repeat what the choices are: move my dad to a nursing home or assisted care facility, move both of my parents, or stay at home. The last option includes the caveat of hiring in-home care but my mom always ignores that.

“What do you think?” she asks me.

“I think we should do what you want,” I state neutrally, and then I add, “You know which option I think is best for everyone.”

We continue to walk in silence, the summer sun bearing down on our backs as we trudge along the sidewalk. Across the street, walking at even more of a snail’s pace than we are, I see one of her church friends who lives in the same neighborhood.

“Hi Auntie Shieh!” I yell, waving my hand.

“Oh!” she looks up at us. “Ni hao!”

“She’s really something,” my mom says to me after we take a turn. “She’s about 90 and she lives on her own at home and is still healthy.”

My mom’s not wrong about any of this. I point out, however, that she has family who can come and take care of her. She gets rides everywhere and doesn’t have to worry about most day-to-day logistics of living. Regardless, my mom homes in one thing.

“She can do it. Why can’t I do it?”

I think the biggest lesson I’ve learned so far is that even if the elderly aren’t in charge, you have to help them feel like they in fact, are. To help them do what they still want to do, even if you’re pulling all sorts of magic tricks behind the scenes. That getting old is, well, hard.

“Stay at home then,” I say, helping her decide the thing I already know she wants. “We just have to get help, though.”

“For what?”

I blurt out a long list of things. Groceries. Picking up mail from their PO Box. Getting rides to go to church. And then I start to get into some details about taking care of my dad, like helping my dad take a shower, and she starts to object.

“No. I can do it.”

All I can do is sigh.

“What do you want to do, mom?” I mean about this decision, but in many ways, I feel like I’m retroactively asking for her entire life, as if maybe no one has ever asked her this question before. That ultimately, what does she, herself, without any pressure from the outside world, what does she want to do?

She, of course, takes the question to simply mean, what do you want to do right now?

“I want to see daddy.”

And so we’re back at the care center, sitting, doing nothing, just taking up time. I try bringing work with me but I just can’t really do it. My head isn’t really here, and I’m half-productive at best.

I honestly feel like I’m hitting my limit. I have never experiencing this feeling before, where my brain literally cannot accept any more impulses because I’m out of space. Where I struggle so hard to recall anything, or to understand what’s going on that I can tangibly feel the lag between the literal seconds between hearing words and actually comprehending their meaning.

Maybe it’s because my parents are an energy sink. I have to constantly give to them, and my parents are long past the ability to give anything back to me beyond the minute things that aren’t worth much, like doing the dishes. I may have chosen to be here, wanted to be here, but it doesn’t change that I’m running dangerously low on metaphorical fuel.

And then there’s the biggest problem: I don’t know how long I can last because I don’t know what the end looks like. With grief, there’s usually a day where you’ll wake up and know that things will eventually get better, or suck less. You may not know when it’s going to come, but you know it does. When does this journey end for me, though? Is it when my dad dies? When my mom dies? When I use my power of attorney to force them into a nursing home? Do I just decide one day to leave?

When I moved back, I told everyone that my goal was to help my parents transition into another stage of life. But the reality is that I don’t know what that stage actually looks like. Like I’m building a puzzle, where I have a few pieces, and some of them seem to fit, but like I’m missing some central piece that connects all of them together.

All of this, is what goes through my head instead of working.

My mom, on the other hand, is just sitting there. I wonder if she thinks about even one-tenth of the stuff that goes through my head. For her, maybe the world is much simpler. There are the things you do, and you just do them. And suddenly, as I’m watching her, she blurts out something that helps me put everything into place, and I can tell it’s something genuine because it’s a phrase I’ve never heard her say; something that’s entirely off script.

“The next few years are going to be very difficult for me…”

And like that, everything clicks. She’s handed me that last puzzle piece. It’s my come to Jesus moment.

When I took a step back and viewed this whole experience as a story, I saw myself. An early thirty-something, single guy, not married, no kids, moving back to what used to be ‘home,’ all to learn to take care of his parents. Add on only a handful of friends, and not a lot of time to go out and make new ones. All of those things made me feel alone, and I’m chalking up those reasons as to why this experience has been so hard. I’ve felt like I’m not making any real progress, and each time I looked at myself, I just got more and more mad.

But that’s because, if this is a story about someone learning to be a caregiver, I thought the main character was me. I was wrong.

If this is a story, it’s a story about someone committing, or recommitting, to do the thing they’ve always wanted to do. Because it’s what they have to do. It’s the only thing they know how to do. Choosing to, as they have multiple times over the course of many decades, to stay home, to take care of my dad.

This story is about a single caregiver. It just isn’t about me.

It’s about my mom.