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Dad, a Death Sentence and the Planner Who Set Us Straight

There are few things in life more fraught than conversations about illness, death and money.

I know this. I’ve written about it before.

But I really understood it only after my father’s amyotrophic lateral sclerosis was diagnosed in 2015. It was tempting to curse the gods, rant and rave, and lose myself in anticipated grief. That wouldn’t have been all that practical, though.

Thankfully, I wasn’t managing things alone. My two siblings absorbed the news in their own way, but one thing we were certain of was that we needed a lot of help, and fast. Sure, my brother is a lawyer, my sister runs a nonprofit that helps cancer patients, and I tell all of you what to do with your financial lives. But this was a case for a specialist, who could do what we couldn’t.

Luckily, I knew just whom to call: a medical doctor and certified financial planner with a passion for hard-luck cases. And the last five-plus years have been so much better than they might have been had she not turned up in our lives.

During my dad’s illness, I experienced firsthand what had, until then, just been book learning: Financial planners are often at their best when your life is at its worst.

Almost immediately, my siblings and I found ourselves out of our depth on a number of levels. What to say about any embarrassing financial details that emerged? What happens when Dad doesn’t want a feeding tube, or doesn’t want one anymore? How do we honor his wishes, and when does the family need a lawyer to advise all of us? Will he starve? Will it hurt?

As we contemplated such things, pacing the cul-de-sac outside my father’s house in Boca Raton, Fla., the three of us repeated one phrase, over and over: “We just need to call her.”

This is the part of the story where I might otherwise introduce you to the financial planner in question, but I’m not going to name her here. I’m not big on endorsements, and this one wouldn’t help you much anyway. She stopped taking on new clients a few years ago in order to teach other advisers to do more of what she does. I hope that means that many more people will get the kind of help that she gave us.

But I do want to outline what the three of us got right — and what we screwed up — so that if you ever have a loved one in a similar situation, you’ll have a sense of what to expect and what to request.

My siblings and I had always gotten on quite well, but we feared a breakdown in overall family dynamics if we weren’t careful, even as we were desperate to act fast to protect our dad and his wife as best we could. The living needed at least as much help as the client who was dying. To the three of us, at least, feelings were going to matter just as much as finance.

But on the most primal level, we were simply reeling in those first few months. A.L.S. is an unpredictable disease — one that could progress rapidly and remain challenging for a while, draining away assets that took a lifetime to accumulate. We didn’t quite know which task to tackle first.

A financial planner’s first course of action, though, is often rejiggering and simplifying investments while developing an all-new cash-flow plan. This was especially necessary in my father’s case. Years earlier, I’d had “the talk” with him: Don’t let a nice stranger sweet-talk you into a suite of proprietary, expensive, underperforming, actively managed mutual funds. But it didn’t take, and he’d done it anyway.

That was only the beginning. As Carl Richards, the former New York Times Sketch Guy columnist, is fond of saying, real financial planning is a process, not a collection of investment products.

Any illness that might mean a precipitous decline — whether A.L.S., Alzheimer’s or certain cancers — involves countless questions as the worlds of medicine and money collide. A good financial planner can answer them off the top of her head.

Some of these questions are immediately evident, even if some of the details vary. When do you start or stop a Medicare Advantage plan? When do you call in hospice, what do its workers do, and who pays? In this case, there were questions about navigating the Veterans Affairs system, a bureaucracy as befuddling as it can be generous. (Seriously, to whoever arranged the benefits for veterans with A.L.S., thank you. You might have kept Dad from zeroing out his assets altogether.)

Then there were things we never could have imagined. He gave up his car keys voluntarily, but would we have to ban his beloved red wine? Does it make sense for an A.L.S. patient to have a colonoscopy? And what about that feeding tube?

It’s helpful to have a health care practitioner on speed dial for things like this. But a good planner can do even more.

When it looked like Boca Raton was going to take a direct hit from Hurricane Irma in 2017, she told us in no uncertain terms to get our dad and his wife — and one of his caregivers and all his medical gear — up to Orlando. She told us what to pack (a few weeks of supplies, in case power was out for that long) and even offered to put them up at her place. Even if you find good help, you might not find help that good.

My siblings and I were also lucky that her personality matched our family well — even her slightly morbid sense of humor. She reminded us that one clever way to find good in-home caregivers is to ask your local hospice for the names of recently unemployed caregivers. And she laughed along with us when Dad inadvertently disclosed — when a piece of software sucked in all his financial accounts — that he had co-signed on a home-equity loan for an ex-girlfriend and was, um, still a signatory.

Our planner seemed to care as much for Dad as we did. One email rant began: “Your dad’s colonoscopy story still irked me, so …” And she sometimes got on the phone to give Dad’s doctors the third degree.

It may feel strange to think of it this way when you or a loved one has been served with what feels like a death sentence, but good financial planners are really in the wellness business, as Rick Kahler, a financial planner in Rapid City, S.D., wrote in a recent column in the trade publication Advisor Perspectives.

At first glance it seems like an odd sentiment when someone’s getting well soon is an impossibility. But it is sensible to aim for a more holistic sense of wellness — the quality or state of being well sorted.

That involves more than papers and powers of attorney. It’s about clearing space in one’s brain to contain the joy that comes from anticipating the next fun thing that is still in the realm of the possible.

And because of her help, it was easier to enjoy taking Dad to see the Cubs play again, and check a Bruce Springsteen show off his bucket list. There were epic feasts with grandchildren and fraternity brothers from half a century ago, and tickets to “Hamilton,” and visits to family in Maryland and New York City.

We were lucky in those ways, and more. My dad and his wife had the financial wherewithal to pay the planner’s normal rate — a flat fee that worked out to roughly 1 percent of their investable assets, per year, at the onset. (A straight 1 percent is the standard charge in many financial planning circles.) So it wasn’t a bargain, strictly speaking, but, wow, was there value.

If you find yourself in the situation our family did but can’t afford to pay that much, there are still people out there who can help. The National Association of Personal Financial Advisors, the Financial Planning Association, XY Planning Network, the National Academy of Elder Law Attorneys and the American College of Trust and Estate Counsel have members who do this kind of work and may offer pro bono help or sliding-scale rates. Every region has professionals like the one our family worked with, even if they aren’t as easy to find as they should be.

Before you sign on with one, it’s OK to ask for details of what the planners would recommend if you were to work together, including a list of tasks that they would check off in the first several months. If the first planners you interview can’t do it, whom do they recommend?

A good planner will give you recent references, and you should speak to the next of kin of those clients if you can. These people may help in other ways, too: Inquire about how best to preserve family harmony when so much is going so poorly. Ask what went wrong, what they would have done differently.

For all of the relative contentment that my siblings and I felt, we did mess some things up. We never succeeded in persuading — or forcing — Dad to learn to use his text-to-speech device fluently or finding a tutor who could help. We didn’t always insist on being on speakerphone when he was with his caregivers in the doctor’s office, which would have saved a fair bit of hassle.

Also, if the patient has in-home caregivers, as our dad did, ask your loved one to codify what sort of severance or bonus to pay the caregivers when death comes. Put it in the will, and revisit it every few months as circumstances change.

My father died on Feb. 3, suddenly, and not in any of the ways that we had anticipated: He wasn’t in hospice care, and he didn’t pass away after giving up on a feeding tube. In fact, he had just gotten his second coronavirus vaccine shot. We were hoping to see him next month.

I cried, and we all did, as much as my siblings and I had been preparing for his inevitable death. But in the last several days, as I read every one of the 657 emails we exchanged with this financial planner since 2015, I found a note about the first time I cried that hard in the wake of his diagnosis. I had forgotten all about it.

Before she had signed on formally to the case, she wrote a seven-page letter outlining what they would need to do together if she took him and his wife on. Turns out, she does this for everyone with a significant illness.

“Making decisions under duress is difficult,” she wrote. “Having as much information that is as clear as possible hopefully makes it easier.”

When I finished reading her letter for the first time back in 2015, I burst into tears. It wasn’t sadness exactly, or fear about what was to come. It was relief. I told her so then, and she cried, too. Now, I’m telling you.

Every person who faces what we did deserves to have an equally comforting experience, and I promise you that it’s worth the effort to seek it out.

My dad’s memory is a blessing, even more so because our family was not brought low by one of the worst diagnoses that anyone can receive. These last five years contained more joy than sorrow, and it is in no small part because we found the right kind of help.

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