My (Latest) Brilliant Career: As My Husband's Best and Brightest Patient Advocate and Caregiver

Two Book Proposals

Book One: The Patient Advocate

(A preview of Book Two, which I composed yesterday on my first day without a fever, can be found at the end of this article.)

I am a wife and mother of three, a grandmother, a sister, a sister-in-law, an aunt, a godmother, and a dear friend. I am a lawyer, and now (for over 14 years) an advisor to other lawyers. I have led a rich life. A lucky life. A good life.

In 2010 and 2012 my husband survived both colon and brain cancer, both barely inside the minimal safety of the Stage 3 hanger. Since then I have deployed all the hard-won skills, savvy, and wisdom accumulated in my many other life roles to become the best of the best in a new role, and in my third-- most meaningful-- career.

I am a patient advocate. I have neither business cards nor website. I have only one client. I provide my services pro bono but am richly compensated. I am very good at what I do.

About five years after his first diagnosis my husband, the strongest, most courageous person I have known, entered the disheartening stage familiar to the host of souls who have experienced long, excruciating months of chemo and radiation therapies. Sometimes the side effects of the treatments that save your life are worse than the illness. Sometimes you wonder if it was worth it to suffer so much at the front end, only to suffer equally on the other side of the cure.

From August 2016 through July 2017, with the late-onset effects of life-saving treatments having already compromised his mobility, my husband endured four challenging hospitalizations, bookended by hard weeks of isolating, spirit-draining residential rehabilitation. Perhaps not always to his delight, he had me in close tow throughout the time at the hospital, complete with my personal hospital cot, a claim of my own to those epic heated blankets, and an oddly entertaining quotidian routine.

On the rehab scene, I put in one 12-hour shift a day--no cot for me there--committing days and evenings to make up for crucial missing comforts, company, and remembrances of the sane and quiet warmth that is home. Everything else had to wait. For a while, once again, life stood still for us all, as devoted brothers, sisters, and daughters manned the battle lines, at home, at his side, and on the phone-- and his dog stood waiting, bewildered, at the front door.

To entertain myself during these strange journeys I would dream up ideas for a how-to book on becoming the quintessential patient advocate, the kind of advocate who makes a critical difference. Writing has always been good therapy.....and I do know I have something to teach many a beleaguered caregiver. But for now, the considered précis below will do.

Part One. The Players

Chapter 1: Always Respect, Always Awe

The first chapter, fittingly, will describe every patient’s first line of defense: the nurses, savers of lives and futures. Enviably skilled, compassionate, and always on high alert, they see and promptly address the early signs of trouble, simultaneously assuring comfort and calm—for patient and family alike-- in an environment that is wildly destructive to both. They deserve your deepest respect and, should they disappoint you, the benefit of the doubt.

Chapter 2: Always Respect, Never (Ever) Awe

Next, the chapter on the doctors, including advice on graciously reminding them that your brain is as big and subtle as theirs. No matter the specialty, your loved one will not receive the very best care unless you establish a rapport with the doctor that is marked by mutual respect. This requires some work on your part, beginning with understanding that, while these are highly trained people, they are (with exceptions of course) not geniuses. You can keep up. And you can contribute, substantively, to both diagnosis and recovery.

I’ll offer thoughts on reminding the doctors caring for your sick and disoriented loved one that you (sometimes only you) possess all the facts informing both diagnosis and treatment. (It helps to speak their language—see imaginary Chapter 7 below.) And why his stressed and overworked attendings may well shrink from the detailed eight-year medical history you freely recite (though the notes they just scanned on the computer at the nurse's station fall pretty short of delivering an accurate picture of anything); and why you must press the facts upon them anyway, calmly and clearly.

And I'll make a plea for respect, communicated in manner and tone, for your loved one’s doctors, and patience during the maddening, stomach-churning wait for a diagnosis and a plan of treatment. You'll hear a lot about respect in my book---mainly, that it must go both ways. That will never be possible if you offer undue, wide-eyed deference to the physicians, even the surgeons in their (granted, irresistible) Preston Burke scrub caps, who may well crave it. It throws off the balance essential to an adult relationship. Way off. So, respect? Always. Awe? Never, ever.

Chapter 3: The Jobs No One Else Wants

This is the part where we’ll talk about the patient care staff whose names are written on a dry-erase board in his hospital room, directly below those of his nurses. The people who do the jobs no one else can imagine doing, and who are, at first, not always as warm and talkative as the nurses, because why should they be, what is their hourly wage, and how often are they directly addressed with respect?

And how immense a gift it is when you grow to know one another and they believe you’re not faking your interest in them, or your gratitude.

Chapter 4: Students and Interns

I can't end the list of the people you'll meet without a few words (more than a few, should you have downloaded the teaching hospital edition of my book) on how the sleep-deprived interns and students fit into the story---thoughts on why they deserve the same respect offered to others, including genuine compliments (ideally in the presence of the attendings) offered by the proverbial end-user, when they display a precocious grasp of both subject matter and bedside manner.

And I'll describe in detail the relief and gratitude you will feel if one of them falls for you and your loved one....watches out for you and wants you to be all right. Like when the med student on the oncology service tracks down MRI results (clear, thank god) that no one else thought to deliver before day’s end, offering you a chance for a few precious hours of real sleep.

Part Two. Navigating the New World

Chapter 5. Life During Wartime

My prime directive for my husband throughout this period was to embed us both as deeply as possible in the immediate community, building durable bonds with nurses, aides, cooks, receptionists, doctors, and physical therapists--even fellow patients and residents and their families, all to guarantee my husband the best possible care, and, for both our sakes, to fend off discouragement, anxiety, and loneliness.

This mission, in some part strategy, but mainly instinct and need, was life-altering, and absolutely essential to both my husband’s recovery and my sustained well-being. When we finally departed the last rehabilitation facility, where he lived for four difficult months, we left behind a rich community of friends who had helped me, with the aid of family and friends, bring him back from an abyss. And I wept.

Chapter 6.?Not the Time for Paranoia

This is the chapter about those whose default in a hospital is not collaboration but skepticism and combativeness. They need to be gently reminded that they owe it to their loved ones to shed their anti-doctor bias, at least if it could cloud their judgment (it will) or poison their relationships (it will) with those he counts on to take care of him, maybe even save his life.

Vigilance and watchfulness, an awareness of the possibility of human error—these are essential components of your job as advocate. But assuming that money- or a lust for power over others--motivates your loved one’s physicians is not just self-defeating---it is lazy thinking. They may be ambitious, maybe even cocky or remote. But the odds that they ran that test today to jack up profits is pretty low. When it comes down to it, they want to make him well. It's what they do.

Chapter 7.??Morning Rounds

There will be a short FAQ section you can consult before early morning rounds, the starting bell of daily life in the hospital, beginning with all the reasons why you must never miss them, no matter how early they begin.

Also, who's in charge exactly? What's a hospitalist? Or an intensivist? Does every single specialty drop by? Why don’t the various teams know what the others are up to??Do they talk? (Also, the perennial Balkanization query: Why is there a specialty-- likely more than one in both medicine and surgery, for every single possible part of the body?)

When being gracious and patient with this group may no longer be a winning tactic. When you need (and have every right to request) another service to intercede and straighten things out. And when it is time to answer the all but rhetorical "so tell us what's been going on" with a raised eyebrow and multiple copies of the five-page typewritten medical history memorandum you’ve compiled. And so on.

Chapter 8.?Talking the Talk. Earning a Backstage Pass.

There’s a chapter on identifying, then memorizing, then deploying the terminology everyone else is using to describe your loved one’s condition and treatment (because why be the only one in the room not speaking Italian when there is a perfectly adequate Berlitz phrasebook available on Amazon). This will assure that you stay fully informed, communicate effectively with doctors and nurses, and, here's that word again, command respect. We'll talk about how this just isn't that hard. Treat it like junior high bio. Listen. Ask questions. Listen some more. Grab a pen. Write it all down. Learn it.

How merely using the generic, not commercial, term for his medication (atorvastatin, not Lipitor....acetaminophen, not Tylenol, and so on), or inquiring by name as to the results of recent blood tests, so long as you also grasp the import of the answer, will set you apart. (For instance, a "comprehensive metabolic panel" is best referred to as such, rather than "some test where they tested for, like, everything".)

Why it needs to matter to you to know, right now, whether they found any "markers" or "titers" for whatever it is they were checking. Because, let's be clear, it matters to everyone else too and they may not know before you do. Maybe the service that's just about to round hasn't thought to check the record. If they didn't order this particular panel, maybe it's not on their radar. But perhaps it really should be. You've got to gather this information, whether they get around to it or not, and make sure they have it.

Remember, your loved one may have no idea what tests got run yesterday, or in the middle of the night when they woke him again because the CAT scanners were finally free for inpatient use. He does know that the IV in the large vein on the top of his hand hurts like hell. And he knows that he sleeps only fitfully, assaulted all night long by lights and bells and chatter and his roommate's coughing and the nurses wandering in every few hours to check his vitals. And that every single day he gets better on paper he actually gets weaker; that the best care in the nation will disable him, and send him to live in a place where half the residents are waiting to die. And that all this will make real recovery all too distant a dream, again.

I'll suggest other ways that you can contribute concretely, without presuming medical training you do not have and alienating your loved one's medical team. Such as by researching meds and their contraindications, alerting the nurses when the saline drip is complete, reading up on his condition and risk factors (but not until you scan the warning sidebar titled "Why Google and Google Scholar are Both Friends and Enemies"), spotting all too subtle new symptoms and ominous new aches and pains he is loathe--file under stoic males, bless them-- to report, and racking your brain for any recent, and as yet unconsidered, changes in treatment, medication, food, location, or other circumstances.

I'll need to find a place in this chapter to tell you what it feels like (sobering, scary, infuriating) to be right---to be the only one who suspected, all along, that doubling a new medication might be at the root of the troubles that sent him to the ER and left him mysteriously sick, weak, and barely awake for 17 days. Until the nephrologist got around to having the idea himself.

I still have trouble with that last one. See my imaginary Index, under "Regrets".

Chapter 9.?What did I miss…?

All the reasons someone (likely you) may need to sleep in his hospital room overnight, every night.

When it’s time to let go a little -- and sleep at home.

Why everyone and everything else must wait.

Things only you will think of or notice that might save a life.?Maybe his. Maybe someone in the next room.

Part Three. Keeping It Together

This is not a story about deep inner courage on anyone's part but his. I had no other choice. I could walk and talk and swallow and think and remember. Why would (or should) I ever have a "choice" when it came to this man I love beyond measure? What would that choice even look like?

You've just got to suck it up. For the sake of the one you love. For the sake of the kids. Certainly, for your own sake as well. There’s no point in overthinking it. You just have to do it -- or turn the job over to someone who can.?

Well, most of the time, at least.

Chapter 9.?When You Forget to Put Your Oxygen Mask On First

I'll share some stories--mine and those of others, about spotting the rare and random opportunities for temporary collapse, for rest for the weary, that you may chance upon if you're lucky. A blessed invitation from the universe to fall apart, to pause, suspended in a safe space, for just long enough to knit up the proverbial raveled sleeve of care.

Like when I tripped and slammed my head hard on the hospital room floor during rounds, and five nurses and doctors flew like angels to my side and took care of just me for 15 minutes (during which time I could do nothing but weep), then collared my husband's medical team because I refused to be wheeled down to the ER (or stop weeping) until they had made an appearance and told me whether or not we needed to worry about something new and terrible today.

And how, when I arrived in the ER in a wheelchair (still weepy), apologizing for not having the life-threatening concussion that would have justified my taking up a bed and their time (both precious), they gave me my very own wristband and heated blanket, squeezed my shoulder and told me to take some time to sleep. Half an hour later I was renewed and transformed… by both the tears and the kindness.

Chapter 10.?Friends

There will have to be a chapter (those who've danced this dance before may jump to Chapter 11) on why some of the ones you need and trust most will reach out to help… and some will not.?Why this will likely not hit you until all the hospital drama has concluded and you find yourself in a distant rehabilitation center with food that's even worse than the stuff people have to eat until cleared by the speech and swallow expert (yes, that is indeed an actual thing), where the people don't know you and appear (only at the start, and only if you let them) not to care, and where the hard, hard work of rehabilitative physical therapy begins--with examples of failure surrounding you every day, and there is nowhere to find a perfect cup of tea or a quality dessert.

Why you must be ready for this part of the story, bracing for the day you realize who has loosened ties with him, and with you, at the lowest, scariest time in your lives. Hoping he is so focused on surviving and getting well that he won't notice. Wishing you hadn't.

Why some of his dearest friends will content themselves with one-off "thoughts and prayers” texts, while most, gratefully, will reach out often, by phone or in person. Why, if you're lucky, perhaps there’ll be one or two who’ll drive 40 minutes to this distant suburb, where everything smells of disinfectant, forgetting, and dying - just to bring a meal so splendid it will supplant that unspeakably awful institutional food for two whole days. And then another one the next week. And every week after that.

How good it feels to read your text messages (because talking on the phone is often too much and even those with arms wide open likely won't be able, in that moment, to do anything at all to fix what's broken), texts asking after him, and you, or sending news and photos of babies and dogs to distract and warm you and to remind you of the army standing ready on the bluff. And another from each of these stalwarts on Saturday. And another next Thursday, even if you never ask them to do more --even visit--because you don't know what would help.

How your girlfriends, and a glorious handful of guys, on Facebook will always find ways to buoy you, even though Facebook has indeed pilfered every iota of personal data from you all and is, therefore, persona non grata.

How good it feels when your oldest friends simply ask, flatly, exactly what you need (just their company, you'll say), then drive four hours north to make that happen, eating takeout with you both in a rehab cafeteria crammed with wheelchairs (the first time they’ve seen him in one of those), alarming trays of Jell-O, and the permanent residents of the memory wing, then spending the night at home with you and the girls—sharing stories from childhood and reducing everyone to helpless, fortifying laughter.?

How sometimes you need people, the practical, resourceful ones, to do things you cannot stand to do yourself, making calls or finding information, or solving problems that are not life or death but that feel insurmountable from your perch on trouble mountain. And how not everyone wants to be given so inglorious a task but the ones who do are heroes.

Why this part extends well beyond the imaginary scope of my imaginary book, beyond hospitals and rehab to forever, it seems--to the time when everyone has figured out, correctly, that there are things that have changed that won't be changing back.

Why some people simply cannot help themselves - unable, even in the name of friendship, to abide the jarring transformations, some permanent, that serious illness brings, and the frightening reminders of their own mortality. Unable to sacrifice the conveniences and routines enjoyed by the well to accommodate the grim needs and tiresome schedules of the sick. Unable to tolerate the simple fact that the pain and struggle that is his life is not going away, that taking "a break" from its physical and spiritual demands is a luxury with which he is not familiar.

The powerful feelings of gratitude you feel to those who were always true and present. How hard it is not to feel mean things towards those who were never either. And why this is sort of a good thing, because now you know.

Chapter 11.?Coping

There will be advice on dealing with the waiting. So much waiting. And on playing through the fear. Ways to train the doctors to deliver information promptly and compassionately. Good news first? Bad news first??Or something better—something more elastic. A plan of action broadly infused with hope. Always hope.

Also, if I can even stand to dig into this, some troubling thoughts on the terrible toll taken on your children, and why this will likely be far more painful to contemplate, and far more difficult to reverse, than anything else. And this is the pain that will linger and grow and, one day, loom larger in some ways than all that went before.

When to ask for help and comfort for yourself. When to trust your gut and demand to be heard and obeyed. When to calm the hell down and let them do their very difficult, stressful jobs. When to be fearful. When to be fearless.

Part Four.?The Unexpected Joys

And, finally, a section dedicated to those random, transformative moments of grace that bring comfort and clarity and joy to the day, if you let them:

• Like the harpist playing “Danny Boy” in the hospital lobby while you lean against the wall behind her listening to your heartbeat
• The Morris Dancers performing for one of their own, and his forgetful mates, in the?rehab facility’s cafeteria
• The exquisite luxury of speaking French with Joelle--the nurse from the Ivory Coast
• The small children and family dogs who drop in from time to time, unaware that there is anything at all wrong with this picture
• The Easter Sunday on which eight of your adored nieces and nephews show up at the hospital (because you had to cancel the family lunch), making you and your daughters laugh for hours in the hospital cafeteria and posing for a joyful photo you can post on Instagram to show all your people that you are still you
• All the chocolate (donated by those very same eight nieces and nephews) that you pack up in small biohazard bags and deliver to everyone on the nursing night shift
• The nine-year-old who plays for her grandfather on the standup piano in the rehab library, to much applause
• The insanely lifelike sleeping, breathing toy cat in PT at the rehab facility, where Laura and Hetal, his gifted physical therapists, helped restore his strength and spirit --and mine too
• A brilliant abundance of spring flowers in the garden
• The power of music to restore your soul on the late-night drives home alone from the rehab place
• A reminder that sitting outside on a summer evening can feel awfully wonderful pretty much anywhere

And your girls arriving, smiling, for a meal—aware that they are themselves the reason their father has survived.

Part Five. The Bottom Line

So here's the point I want to make in my book-- my most heartfelt advice to the dispirited, exhausted caregivers among you:

Embrace the challenge--all the way. Wholeheartedly inhabit your role of advocate, just as you would any profession, standing tall and smart and formidable, committing to memory every detail of your loved one’s medical history and treatment plan, building robust and genuine community and goodwill, and earning the respect and affection of all those who diagnose and treat and care for him. Take pleasure -- every day, all day -- in doing the job better, and being braver and tougher, than you ever thought possible.

For even in such unforgiving circumstances you will, time and again, feel the rush of satisfaction and strength, sometimes pride, sometimes even joy, that we all feel when we excel, when we do the job right - and in so doing make a tangible difference. This surge of personal satisfaction and pride, I believe, can be as crucial to assuring your loved one's recovery as are love, family, and community. It can make the critical difference between succumbing to despair and surviving an unthinkable challenge. It can give you, the soon-to-be revered leader of his team, the extra firepower you need to take back his present and ensure his best future.

Your love is powerful medicine. But your advocacy is the true lifesaver. Stand tall. Gather knowledge. Build community. Every one of us has it in us to do this. And should you falter, try taking a few huge breaths, then announcing this (loudly) to the mirror or to the world, within the shelter of your car:

"I am a patient advocate. I’m the one in the room no one should underestimate, the one no one wants to disappoint. I am very good at what I do."

Addendum: January 11, 2024

I got good reviews in 2018 for “Book Proposal One (the Patient Advocate)." I was comforted to learn that it resonated with many others facing, remembering, or fearing similar challenging circumstances.

So I've written this preview of “Book Proposal Two (the Caregiver).”

My first article was an abbreviated account of a period during which it seemed possible that my husband might reclaim meaningful mobility and clarity. That was the plan and we were all in, he most of all.

But the day had to come when a sequel would be needed. An account of the years (starting before the Great Confinement) when, though I still deployed my skills as an advocate to protect my husband from a range of dangers, I discovered a brand new one - a bright red sniper beam coming right at me.

Much has changed since I wrote the first article. ?I've had to initiate ever more frequent trips to the ER, masking to protect us both from the maskless (including health care providers leaning in to examine my husband). I’ve had to expand the assistance I have at home. (I cannot begin to imagine how those who can't afford help get through the day.)

And, strangely, the serious looks of respect from my beloved Cambridge EMTs and the smiles and thank yous from my husband’s doctors that used to help balance out the lousy days ?-- they still warm me, but it’s not enough.

Now it's 2024, and the daily challenges of keeping my husband safe and comfortable, supporting him emotionally, and coping guiltily with my own frustration, impatience, exhaustion, fear, hopelessness, and anger -- all this is sometimes overwhelming. If not for the love of my family and friends (and my dog of course), and the immense joy I get from my work (there's an abundance of both) I would have hit the proverbial wall ages ago.

So now that the fever has broken and I've resumed my life I have to consider my own physical and emotional situation. Few people can understand how hard it is to ask point blank for help - even from your kids (the reversal of roles greatly pains me), and especially from those you may have mistakenly thought were in the team rowboat with you. Today, finally out of bed and possessed of shocking physical energy, mental clarity, and great-to-be-alive positivity, I'm taking steps to fix some things.

I’ve been scared straight:?I was the only person in my family who caught my precious grandbaby's holiday cold.

We all hugged and kissed my granddaughter constantly, but her mom and aunties didn’t get it. Our other caregivers didn't either. And, astonishingly, and despite my deepest fears, my purportedly highly vulnerable husband didn't even get it. Yet I was down for the count even longer than when I had my appendectomy, like Madeline, when I was four.

For 11 days people actually took care of me. Just me, it seemed. They assumed every one of my responsibilities- besides the worrying and daily COVID testing. (Did you know that you’ve got to wait a full 5 days post-symptoms to trust a negative now? Great, right?) I no longer had to stand guard.

The worst of it is this: At times I didn’t even want to get well, not if it meant losing my hard-earned freedom- and the sweet solitude I recalled from a prior life. Not if it meant going back downstairs.

This is why I’m willing to admit that no, I'm not O.K. But my kids and pals are stepping up big time. And I have plans. Baby steps.

Task 1 - Gain back the vanished ten pounds.

CAVEAT: Mine is an exceptionally personal approach to the task of protecting and caring for a loved one with a serious illness. It is not the story of the caregiver whose loved one carries a stated terminal prognosis, or whose parent or spouse has full-on dementia or its equivalent. I am among the tiny few caregivers who receive the physical or emotional support they need and require from the nation's healthcare system - or even their family and friends.

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