Real weirdos, wandering far off in the forest, quite distant from the American Way

Some readers may be made uncomfortable upon reading this.

Tsk. Life is pain. Your mileage will not vary.

Until the last eighteen months kicked into full gray swing, like many Americans I never really thought much about elder care, one’s permanent failure of health, hospices, nursing homes—stuff like that there. My grandmother was in a home, and my Dad had to spend a few of his last weeks in one under hospice care, but as a typical guy my age I wasn’t really involved. Old and failing relatives are either people cared for by others who you visit occasionally (or ritually, as part of the often-maligned Holiday Family Visits), or seemingly self-sufficient people who you talk with on the phone from a great distance, who you suspect are bravely hiding much of the truth of their lives alone out there, but also respect for their spirit of tough-minded independence.

About a year ago, my 83-year-old Mom moved in with us (at our behest), and at the same time my wife’s parents became very ill and needed 24/7 care. My wife and I have taken this entire last year “off” to help them full time. No grad school, no work, not much in time to spend with the Old Gang.

It’s a real job. Hard to explain at school, at work, and to the Gang. To some, I recently started framing it as “taking a year of retirement now”. That is of course a very bad way of making them understand why we don’t have real career-forwarding jobs, and don’t write back right away, and don’t go out to the pub ever any more, and spend what little psychic energy we have left on essentially mindless hobbies. I balk at drawing the analogy with the social change that happens to couples when they have kids. Valid as that may be. Suffice to say, it’s a large-scale familial shift for all of us, the sick ones and the caregivers.

Anyway, this isn’t a sodden diary entry about the self-imposed unemployment or the depression or the stress, or even any of the particulars of illness and medicine. It’s about culture.

I mean, who lives with their parents? At our age?

In a year and more of talking with people in our exact demographic group [consisting of service-sector middle- and upper-middle-class folks with independent book-focused TV-eschewing irreligious computer-using globe-trotting lives and two or more postgraduate degrees, whose parents tend to be Depression- or WWII-babies, often themselves intellectuals], the two most common responses the these aspects of my life have been, (1) “Wow, that’s remarkable; I could never stand to have my Dad/Mom live with me, but more power to you!” and (2) “When I go, I want to go quickly so I’m not a burden on my kids.”

Never, “Oh, we did that, and it was the best thing…” or “We built a handicapped accessible wing on just a few months back, let me give you our contractor’s number,” or even, “You’re the third family I’ve met this month who’s dealing with that.” Not once.

People don’t go about it this way. Not our people, at least—the ones who it strikes me can best afford it financially and socially. Actively taking care of parents is much more common among poorer demographic groups, and more religious groups, and those whose parents can’t afford any sort of care at all. And they make it work, somehow. There were no Elder Care Campuses when my great-grandparents emigrated from the mountains of Slovakia and moved in with my grandparents in their farmhouse in North Royalton, Ohio. There were no mother-in-law suites, even, nor Elderhostel, nor Senior Centers, nor gerontologists. Interestingly, none of the other people who do take care of their parents seem to take advantage of those resources, either, whether by choice or poverty.

Nowadays, if they were instead in our demographic group, my great-grandparents might get admonitions from their kids to “learn to use their email” and “let us know if they needed anything”. They’d have a lifestyle choice to make.

On their own.

In a way, it’s like a collective stroke-induced blindness, so subtle that even the absence of attention is itself missed. Older and middle-class? It’s up to you to finance and arrange not only your children’s education, but also your long-term care so you don’t bother them. It’s up to you to pick a new place and arrange a move when you can no longer take care of your current house. It’s up to you to coordinate the bewildering cocktail of medications incessantly prescribed by the propagating hydra-heads of specialist physicians that pop up just when you think you’ve finally knocked one off the list. It’s up to you to go to more doctors, and to change doctors if one makes a mistake or doesn’t listen to you the way you like, and to know where to find one when you need a new one. And to figure out how to retain an ounce of social life, while you’re at it.

But don’t bother your kids.

This is odd. Not least because our parents’ and our generation have always struck me as ridiculously child-centered. A coworker once told me, noting that he was passing along sound advice, that he doesn’t think one is a fully mature human being until one has raised kids. And that’s a good way of stating a prevalent attitude, if you think about it. So much fuss is made about fertility treatments and school choice and the insistence on having children. In fact, that it’s spawned the sadly amusing backlash of the “child-free”.

We don’t really pay collective attention to earlier generations. What attention is paid, is given by only the closest relatives, the core family. Even where care is given, one never takes care of one’s grandfather, one’s uncle—that’s their kids’ responsibility. Political society’s focus is forward; for social conservatives and liberals alike, the fundamental question is: will it do for the children?

So is the stereotyped nagging mother right when she points out how much she’s given, and look how she’s treated and ignored in her elder years? Or is she right when she insists that she should not be a burden on her already overloaded children, that she’s fine?

Both? Neither?

We’ve spent about 18 months of the last two years looking for a new house. New construction, recent construction, old construction. Planning ahead, we need a practical first-floor bedroom with a reasonable and accessible bathroom. Which, in the houses in our price range, does not exist: You have your choice of a palatial tile-encrusted whirlpool biddy-drowner in a vasty Master Suite, or maybe a “study” right next to the dining room, which could be used as a “bedroom” with an adjacent half-bath; or else it’s a rancher (“ick”), with exactly one (1) Master Suite intended for Mom and Dad, plus three or four closet-sized Children’s Rooms tucked in a quiet wing so it doesn’t interfere with the wonderful Great Room with Home Theater.

Leaving aside the fact that greige mass-produced development homes are inherently stupid, ugly, and wasteful, and cannot in many cases even be changed to become handicapped-accessible … nah, don’t leave that aside. It’s still the point. So now we’re building a house. Which I expect nobody will want to buy, when we move—it’ll be too weird.

We’ve spent a year dealing with medications and doctors. Just off the cuff, let me estimate that our three parents rely on the services of about seventeen doctors, surgeons, and Nurse Practitioners. Every one of these, even the GPs, focus in their fifteen minute appointment on treating The One Complaint: the reason the patient has sought them out, the thing they’ve complained about just now. Indeed, they’re obliged to note one and no more reason for the visit on their paperwork. As a result each one independently prescribes pills for The Complaint, or tell the patient to drop pills previously prescribed by others, and ignores all other aspects of the patient’s state. Even though there is a different GP for each parent—that’s three independent samples—in no case has even one of them ever reviewed the full list of the patient’s prescriptions with an editorial eye. Nobody exists whose job it is to say, “Why are you still taking that Zantulum, when we gave you Nexlac last month?” Nobody to say, “Who in god’s name told you to take six of these a day?! You’re on methotitanate! Nurse, get that moron [Name] on the phone immediately; I want her in my office in the morning with an explanation!”

No Dr. House, as my Mom says. We will all need a House, she opines. I think I agree. An attentive advocate who sees and argues with all the stupid people, who breaks the bureaucracy when called to do so, who makes mistakes because doing nothing is an easy way to die faster, and who fights, in the end, exactly because being dead is the thing that can’t be fixed.

In modern middle-class families, all these medical troubles tend to get taken care of automatically, of course. In a nursing home, you give up your right to chose a doctor, and you never see specialists, so right there you’re back to one sane voice rearranging all your medicines. (Which of course we all know has been a great model for robust, objective, low-error management in all kinds of situations in the world.) Or maybe your meds kill you. Right there you got two easy ways out of coordinating all that rigamarole, with no resulting social stress on the active, upwardly-mobile overworked service industry-employed kiddies in Far Away Town. The rest is just mopping up.

Speaking of nursing homes: They are necessary, and a blessing in some cases. They can save your life, and your family’s life. We personally would be in a far more bleak, ruined condition than we already are, if not for them.

Caregiving is a hard job, with few rewards. One you pay for, one way or the other. In the process of having a nursing home help out, they will inevitably transform your family into a Profit Center, and treat you as generic according to their (which implies your) means: one doctor, one room, one schedule, one menu, one faceless, ever-burning-out staff, shared among the 30 or 50 or 250 patients.

What fraction of nursing homes’ residents need to be there? Let me take a quick jaunt into Modest Proposal territory with that one:

At some point, we all know we’re going to have children. Everybody is well aware how busy you are in this rat-race of a world, and so we encourage you to learn more now, before unexpected events catch up with you, about your local Creche Center Association. At a certified and inspected Creche Center, we’ll take care of your child for the first few years of his or her life, starting from the helpless, medically risky days right after birth, and providing quality care for as long as your family needs us. In the friendly atmosphere of the Creche, your child will be supervised by our trained staff, fed and given the necessary medications on a regular schedule by our Doctor, will be given opportunities to participate in a variety of engaging and therapeutic group activities, and will be helped as necessary on their road towards that great unknown, Adulthood. Family members are welcome to visit their children at any time, and are encouraged to offer input into their care as needed. Now offering an enlarged Premie Care wing, Tastefully 80s-Decorated Child Villa is accepting applications for rooms. Ask about our easy Creche Financing Program, too! We know that childbirth can be a stressful time for any family, so we offer complete counseling services as well.

(You can call your kid, too, if you pay for them to have a phone line.)

Oversubscription, I’m thinking.

How’d this happen, this handing-off of an important part of life to strangers? I can see a lot of low-hanging fruit: geographic dispersion, modern medicine’s focus on mortality instead of morbidity, the notion of a pension, and even a natural outgrowth of the funereal-industrial complex described in the classic American Way of Death.

Yeah, we move a lot. We talk on the phone a lot, sometimes while moving a lot. The majority of us change jobs every five years or so, on average. In most cases we dislike or despise this, but see it as a necessary aspect of a modern career. Yet when we’re older, we all expect to have “settled down;” surely earlier generations intended their gilded retirement to be centered around a single Dream House. What are you going to do, ask your Mom to move to San Jose just because you got a job there? And what will your employer think of that? Surely it’s easier for you to provide moral support; I mean, just think of the additional effort involved in picking not only Brendan and McClintie’s schools and enrichment activities, but also your Mom’s doctors and stuff? Can you imagine, having to drive her around to Garden Club or something (whatever it is she does), and then get the kids to their soccer?

or

Yay, medicine is like soooo great! It keeps you from, like dying and stuff. And, like, the infinitesimal variations in the formulation of leading lifestyle pharmaceuticals can be clearly seen to translate directly into days of additional life. Cool! And we all know they never interact with one another; the fact that “dizziness” appears high on the side-effects list of eight of the fifteen medicines you’re taking right now doesn’t have anything to do with, say, the dizziness_ you’ve been experiencing; that’s no doubt just a symptom of a previously undiagnosed condition. We’ll change six of your medicines, and you just be sure to tell your cardiologist and rheumatologist when you see them in a few months. Oh, no, we can’t change that prescription, that’s your cardiologist’s job; we just do the general stuff. See ya! So glad you’re still alive and all! Get more exercise, too, by the way—but try not to do anything that would, like, tip you over or anything, OK?

or

OK, now we all know that some of you will get pensions (I see some frowns, do I?), and that sometimes a pension can support you in your declining years. But just as new hires at a firm are inevitably offered more money than the decades-seasoned veterans who train them (what? more frowns?), the pension you get will inevitably be smaller than your children’s salary at that time. Let alone the expense of your care at that time. Indeed, your pension fund or IRA or Investment Account will rather play the important role of hush money: For all your productive working life we will say to the world that we have “given” it to you, so that you in turn may admonish your children not to worry, that you’re “well taken care of”, that “everything will be all right”. In this simple and expeditious manner, they can get on with their lives, and you with yours. As it were. Or you could invest in the stock market, if you prefer—we don’t care. Just rest assured that your children will not be given cause to worry. After all, it’s them we need. They will, in turn, be offered generous pensions that seemingly dwarf yours… but let us not stray too far into a future that is, in its essence, none of your concern.

or

Oh dear. Ew. Well, I suppose you could say we all die. I sure wouldn’t—not in public, that’s for sure! Nobody who’s anybody wants to talk, let alone think about it. But still, I guess it does happen. Sometimes. Oh, I see! Yes! So then you’ll want to make up for the various guilts associated with your years of intentional blindness by buying a nice Premium Casket (which you may burn, if you like, or merely rent for a modest sum), and a wonderful engraved headstone, and of course there’s embalming services (which you may burn, as well, if you prefer). Here, come have a nice chat with our Grief Event Coordinator…. What’s that? Oh, they’re not dying? Oh, that’s wonderful—I was so worried. See! Not everybody dies all the time! What? Oh, no, ignore all that, that was nothing you need to concern yourself with. Nononono and tut… now then. You should instead be talking with our Retirement Financial Advisors, and you will want also to read some reviews on Nursing Care Professionals and suchlike. Oh, I’m so relieved—you want Long Term Care, not Death Care. I’m so happy for you. Here, let me get you a packet….

As I said, low-hanging fruit.

But neither here nor there. By now I think some of you may imagine that I’m ranting about The System, that I’m some kind of reform guy. Well, that just goes to show you’re not in the thick of this; that you’re not, as my friend might say in other circumstances, a mature human being yet. “They oughtta do something” is not a rational response. Not even “you people oughtta do something” works, in the end.

I would put my hand on your shoulder now, if I could. This is just the way the world is, friend. You can do nothing that seems reasonable. You cannot petition, or vote, or pray, or complain, or pay vast amounts of money to the Right Doctors, or call upon younger, loving, supporting, relatives for help and expect there to be any real difference. You have one choice, and yet it is amazingly not the choice most Americans in our class actually ever consider: will you participate the period of life when your parents are aging and dying, or remove yourself from it?

[It is left as a brief, no doubt rather unimportant exercise for the reader to explore the fact that it’s an utterly novel difference between our culture and that of our forefathers that we even have such a choice. That we can absent ourselves from the ends of our parents’ lives.]

In the end we do age and decline. And before we die most of us get very sick, we lose more or less of our dignity, and we come to rely on the care of others. Our homes, our health, our social roles, and our abilities are all gradually tugged and yanked out from under us by uncontrollable forces, until we’re either knocked to the ground by a sudden jerk, or left standing on entirely unfamiliar ground.

No way it can work out well, really, not in the sense of, “Please just let it be the way it was,” or even “…the way I was expecting it to be”. All those things people try first? It turns out that you cannot petition, vote, complain, pay or pray your way to a better end.¹ A better path to that end?

Well, maybe. That would be something.

Here is the thoughtless and blind societal ill that bothers me today, and makes me rant so: You must strive with all your might to have children. And at the same time, you must strive with all your might not to die. But your children, well, they should not be bothered by your dying. Indeed, there is no capacity built into the system for such a thing.

You cannot buy a house suitable for an extended family, except for a forward-extended one, with lots of kids. Your employer may balk at paying to move Mom in next door when you inquire about your new job—and probably legally, though they’re prohibited from asking about your kids. You’re encouraged to attend your kids’ visits to the pediatrist, but it is not expected that you will interfere in the relationship between your parents and their physicians, no matter what this newfangled “partnering” bullshit is they’re writing about these days. (I mean, who is the physician even supposed to talk to?)

It’s easy for somebody in my generation to hear seeds of this in Boomers’ old “Hope I die before I get old,” and some may want to point out to Mr. Daltrey that he is now a member of that august demographic segment and indeed the booze and drugs didn’t help much with the timing or nature of his entry. But that’s just glib; it wasn’t the point of the line, after all, nor the attitude of the generation (if there were such a thing). But they could as easily invoke Globalism or Atheism or imminent Technological Singularities, or whatever bugaboo they dislike most.

These things I’m complaining about—the housing and the doctors and the nursing homes and such, which are offered after all as services and improvements, but which are are troubling and wrong for us—they are all effects of a larger-scale change that’s happening. As I said, we have no choice, and as far as I can tell there is nothing to be done to improve even one aspect. There are vast socioeconomic forces in play with lots of momentum and inertia, and social frameworks and services are being eliminated without compensating replacements, and frankly cultural norms are crystallizing and shifting so far to the right and left (same thing, many days) that other alternatives aren’t even being discussed any more. Regarding healthcare, and money, and houses, and drugs, and nursing homes, and health and death, you have no choice in the matter at all.

Whether you’re a parent or a child.

The only choice we really have is how we approach these inevitabilities. It’s a choice that must be made much earlier in the process, and made by both parents and children. Together, or apart?

Neither way is inherently better than the other. We made our decision, and I’m pointing out in my long-winded way that it’s a weird one, and that society’s not set up for it at all, and that troubles me and makes me mad and frustrated. But if you go the normal route, or the difficult route: Somebody will end up dead, in the end, no matter what. Somebody will end up grieving and hurt, in the end, no matter what.

They’re just different paths.