Illustration: Julien Pacaud
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Take My Advice
The phone rang. It was a friend calling for guidance—as friends often have since I've become what my brother calls the angel of death. Having started a blog and written a book about caring for aging parents, I'm now an expert, it seems, on what is broken about long-term care in America, which is pretty much everything.
My friend on the phone is one among many who profess to want help but who actually want to be told they don't need it. They'd rather hear that everything is fine and will likely remain that way for a long time, maybe forever.
If only I could reassure them that this were true—that their mother or father will still be playing tennis at 90, will return a stinging volley and then keel over, with no fuss or bother, maybe giddy at having won that last point.
My friend's parents live in a big house, once a gem but now gone to seed, as a home will do when its owners are too cash-strapped or infirm to maintain it. They don't want to move, he tells me. (Typical.) Readying the place for sale, even with the combined efforts of three grown children, will be onerous. (Indeed.) In its current condition, it isn't worth what they expected. (Sorry about that.)
My friend knows in broad strokes what I'm going to say. He's read everything I've written on the subject, and even agreed with it. But now he tries to silence my frank talk with uncharacteristic babbling. His father, he says, has begun asking annoying questions over and over, losing track of time, wandering aimlessly. His mother is his father's sole caretaker, and she has grown increasingly exasperated, isolated, overwhelmed. Healthwise, she is fine, my friend says—or at least, she's been fine since returning from the hospital after setting herself on fire at the stove.
"That's your definition of fine?" I ask.
So thick is the denial of death in our culture that people can ask for advice they desperately need and yet, once they receive it, manage not to hear a word. Vast numbers of us have our fingers in our ears. But trust me: Ignorance is not, in this case, bliss. What you don't know can hurt you. The longer you refuse to reckon with reality—that your parents will get older and pass away and will probably require significant assistance before they do—the more blindsided you will be when that reality lands like a ton of bricks. Or a searing stove. Or a broken hip. Or any number of events that can signal the caretaking journey has begun.
So just as you would for any other journey, you must prepare. If your parents are still well and if you haven't done so already, sit with them and begin the conversation, by turns practical and philosophical, that will help you help them in a manner that respects their wishes and eliminates as much confusion and exhaustion from your life as possible.
Start by telling them that, while it might be a long way off, there may come a time when you will need to see to their care. Tell them that in order to do so, you need to know both what they want and where things stand. Do they foresee themselves moving into a community for seniors? Where is their money, and how much do they have? What kind of insurance do they carry, and who are their doctors? Are all their important documents complete—healthcare proxy, power of attorney, standard will, and also living will—and in the right hands? Do they wish for extraordinary measures to be taken to prolong their lives? Because your parents' situation will change over time, this is a conversation you'll need to have more than once. I recommend every year.
If your parents have already begun to struggle to live independently, you must speak kindly but candidly about what you've observed, and what you believe to be the best course of action. It may be time for them to stop driving, to leave their home and move somewhere that offers assistance with daily life, or to turn over some of those routine tasks to you or another member of your family. Every set of circumstances is different, of course, but the principle is always the same: You cannot ignore the situation until it becomes a problem.
If I sound harsh, forgive me. It's just that I happen to know—to have seen—that some of the suffering people experience while caring for aging parents is preventable. Of course, however much you prepare, this will still be hard. You may find yourself burned out, emotionally and physically drained, angry, and hurt. You may think you cannot bear up to what is being asked of you. The end of this process—and I pray that for you it's many happy, healthy years in the future—will be unavoidably painful.
But in accompanying your parents through this final chapter, you will also find unexpected sweetness. You will, if you are lucky, experience occasional flashes of humor. And as you'll learn in the slides that follow, you will not be alone. Many have walked this path before you. Some have even made it their business, their life's work, to ease you down this path. (I'm one of them.) An abundance of invaluable resources are available to you.
This journey may be long, or it may be short. It may be arduous, or it may be less demanding than you fear. But when it is your turn to embark upon it, do yourself—and your parents—the kindness of going forth with open eyes. Godspeed.
— Jane Gross
