Listen to this story
One fine spring day a few years ago, I had a thought — one I probably should have had much earlier, one that would return to me over and over, usually when I was trying to fall asleep: Everything is not going to be okay. For one, my parents will die. I even came up with a comforting counter-thought to recite to myself in response: When the time comes, you will have the tools to deal with it. It was kind of like how women who are having their first child comfort themselves with the idea that their bodies should instinctively know what to do. This comforting thought would turn out to be both true and untrue — but it would have to be untrue first, of course.
I had no idea how close to the precipice I was. My mom would die of cancer, at 61, less than three years later.
There are things I wish I had done back then in those limbo days, conversations I wish I’d had with my mom when she was fine. They wouldn’t have been easy, but they would have been so much easier back when everyone was healthy than post-diagnosis, when even the slightest acknowledgment of the looming specter of her possible early death (like, say, flipping the channel and seeing that Steel Magnolias was on) was enough to send us both into sobs. It turns out that having a conversation with a sick parent about their final wishes can be much harder than doing so when they’re fine. Who knew?
Everyone who loses a parent loses them too young. I was 36 when I held my mom’s hand as she took her last breath. But I felt like a “young 36,” maturity-wise, and my youngest sibling was just 20. We are all too young, too raw, too scared, too unfinished, too vulnerable to lose a parent at any age, especially the parent to whom we are closest.
But losing a parent can make you grow up really fast, especially if you’re the one who handles everything (and you might be surprised to find that this role falls to you, no matter your age). My mom’s death was, in so many ways, the crucible in which my adulthood was forged. I went from skipping around the Lower East Side with my friends on a Friday afternoon with a to-go margarita in hand to being the one to sign the papers to remove a beloved mother, grandmother, wife, friend, nurse, and community member from life support. Because sometimes that’s how it works: Your life can change in an instant.
Does this all sound like a cliché? Good. Someday your life is going to change in an instant, perhaps in this particular way. But I’m bringing a reconnaissance squad, and we want to incept some stuff into your brain so you don’t face the same surprises and have regrets that we did. So that, unlike us, you have a little bit of an idea of what to do. This isn’t about grief—though, of course, grief is always in the room. You’ll be sad, but you can handle it. This is about how.
Your Parents’ End-of-Life Planning Is a Gift to You
“I feel fairly lucky that my mom was so sensible about the logistical side of everything,” says Brooklyn author Bennett Madison, 36, whose mother was killed by a bicyclist in Washington, D.C., last year at the age of 65, while on her way home from work. “She was a financial journalist who wrote about retirement and end of life planning, etc., so she had it all very locked down. The fact that she had all that stuff clearly and sensibly planned made everything easier for everyone. There were no questions about what to do, and there was nothing to fight about.”
We should all have parents who plan as carefully as Madison’s mother, but many of us will need to take proactive steps to make sure our parent’s wishes are known — even if it means having some awkward conversations.
What Do I Need My Parent to Do?
Basically, what you want from your parent is confirmation that they have, at the absolute bare minimum, created a legal will and an advance directive with a health care proxy or power of attorney (more on that in a second), and to tell you where these documents can be found in the event of their incapacity or death.
Preferably, though, you want them to meet with a lawyer and do the whole end-of-life planning package, which prepares for not just death but also incapacity. This package, according to Somita Basu, a partner in the estate planning law firm Norton Basu, will take a few weeks to put together and includes a living trust, a pour-over will that works in conjunction with the trust, an advance health care directive that outlines the level of care they desire if they are terminally ill or incapacitated, a power of attorney so their financial and legal matters can be handled during their incapacity, final disposition instructions to direct family or friends on their final arrangements (burial, cremation, location of plot, etc.), and a list of their assets.
And that’s really just the start. Pete Connolly, a TV producer in New York City, lost both of his parents in late last year: his father in late October and his mother in mid-December. Despite his grief, Connolly wrote a thoughtful Facebook post urging his friends to prepare ahead of time by sitting down with an estate lawyer and discussing everything — which his parents had done. “We were very fortunate my parents did an amazing job getting their affairs in order and took the time to discuss with us their wishes (for them and the estate),” he wrote. But even with all their preparation, “there has still been an overwhelming amount of work that needs to be done to settle their affairs. It’s been a real eye-opener, and I can’t even imagine what this process would be like if they hadn’t done so much in advance.”
Connolly urged his Facebook friends to make sure their paperwork was in order, including things like a living will and power of attorney. “Health care wishes, account numbers, policy numbers, income sources, property, debt, how you want the family pet cared for, where you want to be buried, anything and everything that you can think of that might be helpful. There is no such thing as having too much information,” he wrote. “An awkward conversation now and a few hours with an attorney can really make a huge difference for everyone in the end.”
Because my mom was a nurse, she had made the most important plan before she had cancer: She created an advance directive (also known as a living will), spelling out the measures she did and did not want to be taken to prolong her life in different situations, and designated me, the oldest of her four kids, as her health care proxy (the person to make decisions on her behalf in any situation in which she was incapacitated), because, as my mom said jokingly (back when we could still joke), “Your dad would never pull the plug!”
This turned out to be crucial, because when I arrived at the hospital after my mom was admitted for the last time and was suddenly no longer lucid, I learned my dad had filled out all the intake forms in direct opposition to her wishes. Medicine can now keep a human body “alive” indefinitely, and I’ve read stories of families going bankrupt (and becoming estranged) because one or more members insist on doing so for months or years. It’s more important than ever that everyone make their wishes known with an advance directive. An advance directive can be created with the help of a lawyer as part of end-of-life planning. If you want to get this part done as soon as possible, the Five Wishes document is recognized as a legal advance directive in 42 states; it was designed to be extremely user-friendly and can be printed out and completed relatively quickly.
Your parents are also going to need a will, which is a whole awkward conversation unto itself, but remember that you don’t have to see it; you just need to know it exists and how to access it when it’s needed. “Please, please implore your parents to have a will. You don’t have to have them show you what’s in it. Just make sure that you clarify with them they have one,” says Rebecca Soffer, co-founder of the indispensable grief website Modern Loss and co-author of Modern Loss: Candid Conversations About Grief, Beginners Welcome. At age 30, Soffer lost her mom to a car accident and her dad to a heart attack just four years later. “Make sure that they’ve thought through this for you, especially if there’s more than one child in the mix. That can get very muddled after death.”
But How Do I Start This Impossible Conversation?
Your parent probably knows they need to do at least some of this stuff. They probably even have access to a recommendation for an estate lawyer, or they can Google it. It’s actually getting them to talk about it, to have what people in the end-of-life community call “the conversation,” that is the hurdle you need to jump through. This conversation can save you years of anguish and misery.
You might be thinking, “But my parent is a pain in the ass and will totally clam up if I try to broach this stuff.” You are certainly not alone there. That’s why you need a conversational “in.”
Ruth Linden, PhD, founder and president of Tree of Life Health Advocates in San Francisco, who has worked in the end-of-life space for three decades, calls the avoidance of this conversation “one of our culture’s more destructive tendencies” and has some advice on starting the conversation.
“Take off the pressure by recognizing that [the conversation] is a process, not an event. Choose a time and place when you and your parents are relaxed and comfortable. You can take as much time as you need and continue the conversation for weeks or months, if needed. You can make up the rules as you go along, but keep your eye on the prize: completed documents that have been witnessed or notarized.”
Linden suggests completing your own documents first and sharing that accomplishment with your parent as a starting point.
Other tactics include:
- Mentioning someone you know whose parent died suddenly without communicating their wishes and the heavy burden that was placed on the child or children (emphasize this!).
- If applicable, reminding your parent of a family or friend-group horror story of a drawn-out probate court process.
- Or, worse, sharing a case about surviving family members who disagreed about keeping a family member on life support — a situation that would work as a psychological horror-movie premise, but one that happens all the time.
- You can even feel free to use any of the stories in this essay. (That’s what they’re here for!)
“It doesn’t do any of the survivors any favors for the deceased to have not thought through how they want things to go,” Soffer says. “It’s already hard enough to grieve. You don’t want to have to deal with all these unknowns on top of the grief.”
“Talking about end-of-life planning may be uncomfortable and awkward, but only because it’s something few of us have practiced or been taught how to do,” Linden says. “In fact, it’s one of the most healthy and loving conversations you and your parents will ever have.”
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