On Caregiving

Sometimes, when I’m feelings stressed, I like to watch documentaries. I find the slower pace comforting. You know what the subject is, and there are few twists and turns that, if missed, make the rest of the film unintelligible. And when all is said and done, I usually feel like I learned something.

This is how I found myself watching the documentary Thin, a look at a Florida facility dedicated to providing treatment for women with eating disorders. There was no particular reason why I chose this documentary. It simply popped up on HBOMax while I was looking for something to listen to as I worked a jigsaw puzzle. Yes, I live a thrilling life.

Thin is, as you might expect, both interesting and heartbreaking. There’s no narration and few title cards. The camera crew essentially follows four women during their attempts at recovery, centered on the journey of Shelly, a 25-year-old nurse who for the past five years has received force feedings through an abdominal PEG tube. As the film progresses, we see how these women struggle with food and weight and the accompanying issues that underlie their disorders. In the end, none of the four women fully recover.

While the outcome was sad if not unexpected, it should not be seen as the typical outcome for all patients with eating disorders. In fact, during college I dated a girl who was in recovery from an eating disorder. I use the phrase “in recovery” much in the same way as an alcoholic does: no matter how far you progress, how long you maintain yourself, the disorder still exists, is still a part of who you are. It’s not a matter of strength or will. It’s a matter of understanding how your body reacts to certain stimuli, and learning how to deal with those stimuli in a positive, productive way.

I learned a lot during that relationship. I learned about the voice that exists for many of those with eating disorders, a disembodied inner voice that criticizes, cajoles, and convinces. This voice is the force that distorts body image and judges intake as excess, and if that voice is not checked, it can lead people to starve themselves to death. I also learned about the strategies she used to deal with her voice, and the continuing impact her experience continued to have on her body.

What I also learned is that I was not much of a caregiver.

Looking back, I know that I was not nearly well-equipped to be in that relationship. I understood her disorder on an intellectual level. I heard the words she was saying and knew what she meant when she said them. But below that surface level, I don’t think I fully understood the lifelong struggle she was facing, both mentally and physically. Any time I would start to think about those issues, I just as quickly changed the subject, and left those questions for future Frank.

I wasn’t helpful. I learned her strategies for combating her condition, like eating protein bars and other calorically dense foods in order to maximize intake. She described her love of maple-flavored tea, and how Pop Tarts were her favorite “cheat” food, ones she would buy in whatever exotic, one-off flavors she could find. I learned all these things with an open mind. But on a deeper level there was a part of me that hoped she could help me eat more healthfully, could help me find a healthy way to lose my own excess weight. 

This is a microcosm of why I’m not a good caregiver: I’m too selfish. Maybe it’s because I’m an only child. Maybe it’s because I had a relatively easy upbringing, wanting for nothing and experiencing little if any real trauma. Or maybe I’m simply too driven by self-interest to have the capacity to give myself over fully to the act of caring for another person. 

It’s not bad to keep your own self-interest in mind, of course. You have to be able to acknowledge your own needs and wants in order to make a go of it in this world. If you give all of yourself to other people, then there’s nothing left for you, and you become a shell. You become a conduit that shuttles the entirety of your being into other people, leaving you hollow.

And don’t get me wrong, I like doing things for other people. I like holding the door for people. I like cooking dinner and running errands for my wife. I like being available for friends to talk through issues they may be having. I like being, for lack of a better term, a good person. There are some who say there is no truly selfless act, and in a cynical way that may be true. But the feeling of gratitude that comes from being a full participant in the human race is one of my favorite parts of being alive.

But real, long-term caregiving…I can’t help feeling that I simply don’t have that instinct in me. No matter how I try, the focus comes back to myself, and I don’t know how to think otherwise. I don’t feel that deep sense of commitment to caregiving that I feel I’m supposed to have, like some switch that flicks on when the need arises. It’s not there, and I can’t help but feel like there’s something wrong with me because of that.

Caregiving has a particularly performative aspect for me, and I hate it. There are things that I know I should do, that I know are my responsibility and that I need to take ownership of. But the reality is that time is a slog, and whatever ownership I take feels as though I’m doing them as much for appearances as I am for the long-term interest of others.

In case you weren’t aware, I’ve been in Florida since the beginning of November, doing my best to help my mom as she recovers from a heart attack. The fact that I’m still here, and that after two months the recovery process continues to be tenuous, is a testament to the monumental challenge she seems to be facing. And because of that, there is no real timetable for her recovery beyond trying to reach the next step, as soon as she can.

I want to be a good son. I want to be the kind of person who can stay at a hospital all day, can be present to offer words of support and simply be there for as long as the hospital will let me stay. But I’m not. I hate hospitals, hate the constant reminder of the fragility of our bodies and our constant if unconscious struggle against our own mortality. I hate the sounds, I hate the smells, and I hate the feeling of anxiety that surrounds someone you love being sick enough to require being in this most uncomfortable of settings.

The nurses are nice, and for better or worse, I trust the doctors to act in her best interest. But frankly, I’m tired. I don’t like being in Florida, even though I’m writing this on the back porch with the windows open in January. I don’t like being 45 minutes from the nearest big towns, and I don’t like having to drive absolutely everywhere. I want to be back in my home in Philadelphia, bundling up against the cold, taking care of household matters while my wife is at work. I want to get my job back, to start working again and earning a little money and finding some satisfaction outside the house.

Does a good son feel these things? Does a decent caregiver feel resentful for the intrusion into their lives as they knew them? Does a caring person find themselves watching the clock on the wall in the hospital room, wondering when they’ve stayed long enough to qualify as “visiting”? 

My guess is that the root of the issue is guilt. I struggle with guilt on so many levels. I question whether I’m doing enough to support my mom in her recovery. I drive 45 minutes to Fort Myers almost every day, stay for two hours or so, then drive 45 minutes back to my mom’s house. In all that’s between 3-4 hours every day, usually leading to a late lunch around 2pm. But is that enough? Should I be doing more? Should I stay longer, or come back more frequently during the day? Are there questions I’m not asking, or services I’m not requesting, that could improve her chances for recovery?

Even more difficult to deal with is the sense of guilt about the decisions we made leading up to now. When I spoke with the heart surgeon in the hours after my mom’s heart attack, there was a debate about whether or not to perform surgery at all. It took about 15 minutes of CPR to resuscitate her after the initial incident, and there was no way to know what damage had occurred during that time. Certainly broken ribs, likely a punctured lung. But was there damage to her liver or kidneys? Did she suffer neurological damage that could impede the quality of her life? Unfortunately, the only way to get these answers for sure was to perform the surgery, and after consulting with his colleagues, the surgeon agreed to operate. 

And now? We’re still not sure. Her kidneys seem fine, she’s awake and alert. But breathing continues to be a struggle, and she is having difficulty getting off the ventilator. She’s weak, she’s uncomfortable, and she’s impatient to get the hell out of the hospital as soon as possible. But even in the best-case scenario, it will be months before that’s even a possibility.

And thus the guilt. As my wife keeps reminding me, we made what we felt were the best decisions at the time with the information that we had, and the fact that she’s recovered even this far suggests we made the right choice. Besides, when told that someone you love—heck, just someone, anyone at all—can receive life-saving surgery that could potentially offer not only the chance to recover but to eventually thrive, how could you possibly say no?

And yet…the question niggles at the back of your mind. Would my mom want to live like this, if she requires a ventilator for the rest of her life? What does that look like? What is her everyday experience? Will she resent me for putting her in this position? Will she spend each remaining moment wishing we hadn’t brought her back? Would it have been better to simply slip away while coming out of anesthesia, drugged and unconscious to the pain of existence?

There’s really no value in looking back and asking yourself questions like this. Even after finding her living will (which I did not know she had) in the days after her surgery, I would have still made the same decision, if only because the possibility was presented that my mom might one day return to the activities she loves, namely reading books, doing jigsaw puzzles, and watching NCIS in all its iterations. 

But what are the lasting consequences of that choice, both for her and for me? My father lived for five years after a stroke robbed him of the ability to lead a normal life, and his suffering wore on both him and my mother. In the end, while she loved him, his passing in 2021 represented a chance for my mom to live a more fulfilling life. I know the last thing she wants to do is put that same burden on anyone else. But the fact is that she will likely need someone to care for her for the rest of her life, at least on some level, and time will only tell what form that care will take. 

And there’s the third level of guilt: will I ever get my life back? There will come a new normal; normality always comes, eventually. But what form will it take? I couldn’t ask my mom to move up to Philly, not after spending so much time living in a land where 60 feels cold. Nor could I move to Florida myself. I have a life in Philadelphia, and I’m committed to getting back to it.

So where does that leave us? It’s far too early to tell. There are so many steps left in my mom’s recovery that no one can possibly say with any degree of certainty what her future will be. She could return to some semblance of independence, maybe not living on her own but also not requiring round-the-clock care. Or she could be tied to a ventilator for the rest of her life, which requires a particular kind of facility that is surprisingly rare in Florida, given the state’s elderly population.

And so, for the foreseeable future, I find myself faced with the question of what it means to be a caregiver, and what demands I will need to answer for. Perhaps it’s not selfish, to be concerned with my own future as my mother’s health hangs in the balance. But it’s difficult not to feel as though my own feelings, my own wants and needs, should be subservient to hers, and that her health and wellbeing need to be at the forefront in all decisions I make. Because doing otherwise would make me a bad son.

I hope this post isn’t too much of a downer, although I suspect it is. I also suspect there’s more than enough whining for most of you, and for that I apologize. Perhaps there’s a better venue for discussing these feelings. But I hope that in writing about my experiences of guilt and responsibility, there may be some things that resonate with you. Maybe you too have felt this guilt in the past, or are experiencing it as we speak. Maybe you’ll find these words useful if you ever have to go through this experience yourself. Or maybe this post will help you decide to have a discussion with your family members before a critical event like this occurs.

No matter your situation, though, I hope you get the chance to tell the ones you love how you feel. Because those feelings of guilt? I’m pretty sure they’re really feelings of love. They just got jumbled up somewhere. 

But it’s there. And it’s real.