The new normal

It seems impossible that my dad could become more idle than before, but my dad has done it. He still only lives on his bed or his couch, and I can’t identify one particular physical feature that points to his continued downfall, except to describe it as it’s like I can see the youth leaking out of his body and pooling on the floor beneath his feet. I look into his eyes, and they just seem hollow; like that of a baby’s, but without any of the hope and wonder.

There’s a point in life when every time you go to a hospital, you come out weaker than when you entered. My dad has clearly long crossed that threshold.

I can tell my mom wants to have my dad get up and walk around, or else his muscles will atrophy and he really will be a sitting duck for the rest of his life. I’m just not sure taking the effort to push him is even worth it anymore. Sure, he might have more physical strength for the few years he still has, but is it worth the trade of mental anguish for him, and for my mom?

Thankfully, we get a third-party opinion when a physical therapist visits. I warn him in advance about my dad, and he seems unfazed.

“Hi, John, nice to meet you,” he says and extends his hand.

My dad grabs maybe a finger, lets go, and immediately his hand springs back towards his chest. He is not happy about this.

“John, can you show me how you walk?”

I’m not sure if my dad is listening, so I lean into his ear. “Dad, I know you don’t like it, but can you stand up and walk for him?”

Like clockwork, he Chinese cowboy growls, and then struggles to get to his feet. We help him up, but once we do, he once again finds some hidden energy tank, shoos away our arms, and shuffle storms over to the bathroom, whips his body around, and storms back. I can tell the therapist is about to ask him to do a few more things before sitting down, but before he can, my dad just plops back on the couch.

“To be honest,” the PT tells me, “I don’t really think there’s a lot I can do.”

He explains that in his experience with patients suffering from dementia, physical therapy just doesn’t stick. There are some patients where you should force them to still do the therapy, but that my dad is really on the fence. He clearly can walk; he’s just unstable and often refuses to walk. Forcing someone like him to do therapy, will probably backfire, and he’ll find ways to spite us in response.

“Honestly,” he provides one last bit of advice before leaving, “if you can get him to walk by doing something else, even just a little bit, that’s probably more effective.”

So I try one of the few ‘going out’ activities that I’m now familiar with and can control all the variables around.

“Let’s go yum cha,” I tell my mom. Dim sum.

My brain goes into hyper alert mode as we help my dad to his feet and slowly walk towards the car. This will be our first excursion into the outside world since my dad’s come home, and part of me fears the worst—if not for him, then for those we encounter.

But old habits don’t die very easily, and the moment I open the restaurant door and we walk in, a waiter recognizes us.

“For three?” he asks with a smile.

I nod back.

Suddenly, everything falls back into their correct places. The waiter seats us at the same table by the window that we usually go to. They bring us the same tea, and a glass of water for my mom. We order the exact same things, including the entire set of three cha siu bao for my dad. He usually can eat all three, no problem. This time, I notice he struggles a little to eat the last one, and he takes his bites very slowly.

“John,” my mom says to my dad, “how about you save the last one for home?”

“What?” he responds.

“Eat the other things.”

He shoos her away in response.

“No, eat some of the other things, how about it?”

My dad erupts. “Why’s it such a big deal!?”

I chuckle at my mom. “See? I don’t think you should push him.”

“But he can eat all of these other things.”

“But he doesn’t want to.”

My might recognize that I’m right, so she changes the subject, which is a classic maneuver. “He didn’t used to be so ngok.”

“Of course he did. You just don’t remember. He’s always been like this.”

"No..." her voice trails off.

We eat in silence for the rest of lunch and follow the rest of our normal rules when going out like this. My dad pulls out his credit card to pay, but puts it back once I simply hand it back to him. On the way out, he stops by the bathroom, and we wait just outside the entrance. All things considered, taking him out has been alright, and my dad has been forced to move his legs to do so. Surprisingly, He might be slower, even less attentive, and harder to communicate with, but in the right situations, this is still doable.

Also surprising, is that over the next few days, my dad actually seems to improve. I wake up late one morning and find that my dad has made himself coffee and a bowl of Cheerios, just like he used to do before going to the hospital. He knows the milk is in the refrigerator, knows that he can warm up leftovers with the microwave, and knows where his stash of diapers is whenever he needs a new one. Apparently, not all progress has eluded my dad after all. It’s almost like when he was in the care center, he let himself deteriorate because he knew he could just boss everyone else around and make them help him. I’ve long read and heard that if possible, the elderly should stay at home as long as they can; turns out, maybe they’re right.

I do squash any hopes of my dad getting better beyond where he was before visiting the hospital, though. He might be able to shower on his own again, but he almost never wants to. That much hasn’t changed.

“John, how about you take a shower?” my mom tries asking one afternoon.

“What?”

“Shower, okay?”

“I don’t want to shower!” he yells back.

I get up from my room, heave a sigh, and walk over to my dad’s couch where my dad is lying down across the whole couch and my mom is hovering over his head.

“Hey dad?” I ask as I approach him. I wait until I’m right next to his couch and kneel down so my face is inches from his ear. “The doctor wants you to take a shower today. Do you want to do it now, or later at five p.m.?

“Later.”

“Okay, shower at five p.m., okay?”

“Okay.”

I stand up and look at my mom.

“Which doctor said that?” she asks.

“I made it up.”

I hope my mom sees the game I’m playing, laying the blame on an imaginary third-party, but more importantly, giving my dad some semblance of choice. Maybe it’s not really a choice, since I know he’ll always choose the later time, but if it makes him feel better, what’s the difference?

I used to have a problem with lying. Not anymore. This is just how it is nowadays. It’s weird, how easy making shit up out of thin air comes to me now, and how for the most part, I tend to let my dad’s antics roll off of me. I do whatever it takes to make him do whatever he must do—eat, maintain some sense of hygiene—and do whatever it takes to keep myself sane for anything else—lie and don’t complain when he doesn’t clean up his dirty dishes. It’s not worth making him—nor myself—more upset.

This is who my dad is. I think I finally get it.

It’s in finding this new rhythm that the days after have finally, and weirdly, become unusually uneventful. Most of my days are spent doing busywork; signing up for online accounts to help pay bills, cleaning up random boxes around the house, fixing little odds and ends. Soon, nearly every bill my parents receive is automatically paid through their checking account. The list of names posted on the kitchen cupboard that details everything I take care of, and my mom doesn’t need to worry about, is getting quite long. I’ve been able to help my mom secure rides to various different social activities.

I think I can finally see the light at the end of the tunnel. I’ve found the exit. It’s a little far off, but it’s there. I just have to make my way there and open the door. Two things remain: How to help my mom accept help in the form of in-home care, and how to teach my mom to handle my dad’s outbursts.

On the first, I can actually tell that she sort of knows she needs in-home care, because she keeps asking me about it.

“Do you think we need to hire somebody?”

“Absolutely,” I tell her, finding whatever strong words I can use whenever she prompts the topic.

“What would they do?”

I always struggle with this question, because it’s not the obvious activities that they need help with, like groceries, or cooking, or cleaning. It’s the random stuff that happens in the moment, like needing to go somewhere suddenly (unpredictable), or helping move a piece of furniture around (dangerous), or if someone falls (urgent).

And so I always list the obvious stuff, but try to list so many things that it almost seems overwhelming and hope that my mom will see it as a “this must happen” kind of ordeal.

One day, she surprisingly agrees. “Maybe I can ask the cleaning lady to come a few times a week. For a few hours, and she can drive me to pick up the mail and buy groceries, and maybe cook a few times too.”

I cannot even begin to control the smile that forms on my face. “That’s a great idea!” I don’t tell her that it was my idea.

“I hope she will be able to do it.”

“You should start having her come now. This way I’m still around in case something doesn’t work out.”

“No, not now.”

I raise an eyebrow. “Why not?”

“Well, because you’re still here. There’s no need for somebody else.”

And, my smile is erased. But I guess, it makes sense. My mom is mindful enough to recognize she will need help, but calculating enough to know that the need isn’t quite there until I’m gone. The concept of advance preparation has never been my mom’s strong suit.

I’m going to have to just leave, I think. In some sense, I’m a little scared. I wish I could make sure she’d be okay. But maybe that’s something you have to be willing to give up too as a parent. At some point you have to let your kid go, and trust that they’ll still be able to figure things out. Worst comes to worst, I can move back and just force it. It’s nice to have that option in my back pocket.

At least my mom recognizes the need, on some level. Seeding ideas in her head, playing Inception, if you will, has actually worked.

Which brings me to the second goal: getting my mom to accept my dad for who he is now, and giving her the ability to shield herself from him.

My mom may not follow all of my advice, patterns, or my lying antics, but she at least has taken something: She now opens her bedroom blinds in the morning to naturally wake up my dad. And it works, without fail.

Within thirty minutes of her allowing the sun to shower the bedroom with its golden rays, my dad will get up and begin his normal morning routine.

“I wonder if there are other natural ways to get dad to do what you want,” I tell her. I follow her eyes to see if they stay focused on me, because I’ve noticed that she sometimes has become like my dad and says “okay” even though she’s not paying attention. I continue with my idea. “Maybe there’s a way to make his body naturally want to shower on its own. You get what I mean?”

“Yes,” she says with her eyes still locked on mine, “if you think of something, let me know.”

“I will.”

“You know, he didn’t used to be like this,” my mom says.

I can’t count how many times my mom has said this in the past few months. It’s simply not true, but this is one of those things I don’t think my mom can be convinced of otherwise, no matter how overwhelming the data and the evidence.

And I wonder if it’s sadly, something she now needs to be true. In a weird way, even my mom has started recovering from the time when my dad was in the hospital. She’s a little bit more responsive, as if knowing that the standard rhythm of dealing with my dad’s antics is what continues to ground her because it’s simply what she knows, and has always known, and is also too old to change.

In the same way that she needs to take care of my dad to find meaning and worth, she also needs to remember him as something better than he is now—the husband she always hoped he might be—as a way to defend herself from how life is now.

It’s a lie. It is categorically untrue. And maybe just like how I use lies to work with my dad, maybe my mom uses them to protect herself.

And so the next time she says, “He didn’t used to be like this…”

Normally I’d tell her the truth. I have been telling her the truth. That he’s always been like this. To which she usually just says ‘no…’ and lets her voice trail off.

So instead, I simply say, “Yeah. It’s because his brain is broken now. He can’t understand that you care about him.”

And in response, my mom admits, “I guess I just have to accept it.”

I don’t doubt that it will take her a long to accept it. I don’t know if she ever can. I think the ship has sailed on that one. But at least, on some level, she knows it.

And while I’m still around, at least I can still continue to give her as many hugs as possible.