In The Maws of Mania

It may have been the most interesting moment in a long, and not very distinguished, nursing career.

That, of course, depends on how you define it: certainly when I was working on B6 / 5, I could legitimately call myself a nurse. But what about that month or so in which I helped my mother die? In that period, I drifted back and forth from being a son to being a nurse, and if I had had the experience a few decades earlier, I might still be a nurse, now.

There’s something special about it. Doctors make more money and earn more respect, but nurses are, I think, more loved and trusted. They’re there when doctors are not: in the middle of the night, in the middle of a crisis, and also—just as importantly—in those moments of triumph.

A friend in the ICU told me the following story. She had been shopping at the grocery store, and all was normal. Suddenly, however, a man rushed up to speak to her.

“Who are you,” he demanded. “How do I know you?”

She had no idea who he was, and was a little frightened by the intensity with which the man spoke.

“I know I know you,” said the man. “I heard your voice, talking to your child, and I told my wife: I know that woman! I know her voice! Who are you? What do you do? How do I know you?”

My friend—guardedly—told him her first name. Then she told him she was a nurse.

“What hospital?”

“UW,” she said, since everybody in Madison, Wisconsin, knows that UW is the university teaching hospital.

And also the tertiary medical center, which means that the worst, the most mysterious, the most intractable cases end up there.

“Where in UW hospital,” asked the man.

“The trauma center,” she said.

“I was there last year,” he told her. “I spent three months there, but I don’t remember a thing about it. I think I blocked it out, but all I can remember is the other ward that they transferred me to. So I don’t think I know you from there. But damn, I know I know you!”

His wife had now joined him, and my friend felt more safe. And just then, the two women stared at each other: my friend had no idea who the man was, but the woman certainly looked familiar.

“Good God, you’re not Joan, are you?” the wife asked.

“Yes.”

“And you work the PM shift?”

“Yes.”

“You took care of Bill for two months, do you remember that?”

“Bill!”

Joan looked at the face, which she had last seen puffy, ashen, and filled with tubes. And then she remembered.

“Bill!”

And then they were hugging, right there in the frozen food aisle, and she was telling him that she remembered: she had nursed him for two months, each day keeping up a running monologue with him.

“I used to tell you, ‘Hey, Bill, don’t give up on me now! You got a beautiful wife and gorgeous kids, and they need you, Bill. Bill? I know you’re in there….’”

Bill stabilized. The doctors made the decision: it was time to try to wean Bill off the respirator. It was successful, and it was becoming clearer: Bill was very likely going to make it. That’s when Joan, my friend, went on a two-week vacation.

She came back: Bill was gone. He had been transferred to another unit.

The point?

Bill had never spoken a word in his life to Joan. Much of the time, he probably couldn’t even see her. His brain was twisted with pain and drugs. His only connection to Joan had been her voice. And hearing it again, after a year’s time, had sent him on a frantic search to find her, to reconnect.

“I will never, ever, ever not speak to a patient again,” Joan told me. “It was one of the most powerful moments of my life. We just stood there holding each other, and looking into each other’s eye, and we didn’t want to say goodbye. So we traded numbers, and we never called, but that didn’t matter. Somehow, knowing that we had each other’s number was all the connection we needed…..”

Nurses have that.

Doctors?

Not so much….

I tell you this because I am checking Facebook, to find out how an old, old friend is doing. She’s a nurse, but also a patient, since she has bipolar 2-hypomania. And she is also, she tells me, rapid cycling, and I know, if not first-hand maybe first-and-a-half hand about rapid cycling. And I knew because of a very difficult patient on the psychiatry unit, B6 / 5.

She was a patient of Dr. James Jefferson, which almost guaranteed that she would be difficult. Because Jefferson had quite literally wrote the book on lithium: he was the heaviest gun on the faculty, and he did not take patients.

Generally….

Jefferson was either consulting or giving keynote speeches or appear on Oprah or just being Jefferson. But Jefferson had long since done anything so mundane as see a patient. So the fact that he was seeing this patient meant two things: she was interesting clinically, and she had the social / financial clout to get the best.

Probably the last nurse to be of high social status was Florence Nightingale: we are not, generally, pulled from the top drawer. And so this patient was somewhat disliked, since it was hard, somehow, to read that her ski trip in Gstaad had had to be curtailed due to a manic episode. Or that she had called Bill Clinton, at a White House dinner, a polecat….

And she was a rapid-cycler. And so she had gone off her lithium, and gone manic, and then been hospitalized. Then, she had stabilized, which everybody but she appreciated.

Anybody who has taken the moving sidewalks at O’Hare airport has had a glimpse of what hypomanic feels like. Because there you are, sprinting past everybody else trudging along, and you are spending just as much energy and getting there twice as fast. Whee! Life is good!

Indeed it is—everybody would love to be hypomanic. But this woman went way past hypomanic into full-blown mania, which was not so fun.

“There are people with knives just behind me,” she whispered to me, after she returned from her 48-hour pass. “So we have to keep moving! Quick, and whatever you do, don’t look back….”

She had been completely normal when she left. She had stopped her lithium. Two days later, she was hallucinating and delusion.

Well, I gave her her lithium. I called the great Dr. Jefferson. And then, we started walking the halls. I began to orient her: pulling her back to reality. It was simple, really: if she was on a distant planet, I would point out the guard rails of the hospital. If she was flying a magic carpet, I would make her look at her feet. We walked, we walked, and then, forty-five minutes later, she began to clear.

In two hours, she was speaking calmly, brushing her teeth, thanking me for taking care of her, and getting ready for bed.

Perhaps you know—manics don’t sleep….

So now, via Facebook, my old friend tells me: she is rapid cycling. And she never has before. Oh, and the last major breakdown was ten years ago. And so I am messaging her, and tell her to call me, and now—having spent an hour and a half writing this—the communication has gone cold.

Or rather, it’s not. She’s just written to say that she has never rapid cycled from depression to mania as has in the last two days. So she’s at home, since she’s too anxious to work. Oh, and also can’t focus.

It’s odd, how nothing much seems to have changed. There’s still stigma, there’s still shame. I read it behind her words: an old friend of ours is in Madison from out of town, but she isn’t sure she can see him. She might, she worries, just break down and cry.

It would be the best thing, of course. But welcome to the worst facet of mental illness: at that moment when you most need human contact, when you really, really, should break down and cry in an old friend’s arms, what happens?

You withdraw.

Or so you think.

I know now. You didn’t withdraw: the disease has isolated you.

        

      

Nursing Home Blues

They had been married sixty years, though the question remains: aren’t they still married? Because they are both alive, and were never divorced: the marriage remains, right?

Ummm…not so much.

Or maybe it does, because the wife has learned, well in her 80’s, to use a tablet computer. And given that she never learned to drive, that’s quite an achievement for an aged lady. But she did it, because even though the nursing home is supposed to be excellent, and is definitely expensive, well, who knows if they are treating her husband right? So she lies awake most nights, and looks at the tablet that is showing her the live feed of her husband. He’s in the nursing home, and sleeping: she’s at home, and monitoring his care.

Nothing about old age is easy, but this particular scenario is especially heartbreaking. Twenty years ago, there would have been no way to know what the night shift was up to in the nursing home, and that might have been a good thing. But now, the elderly wife—who is only technically not a widow—is calling the nursing in the middle of the night, to say that it’s been several hours since her husband has been turned in bed.

I had assumed, by the way, that the nursing home business is booming: happily, I am wrong. According to an article in the Huffington Post, the nursing home industry is projected to decline by 20% by the year 2021. Why? Well, the Baby Boomers haven’t quite gotten to needing nursing homes, and the federal government has gotten the message: it can be cheaper to keep people in their homes.

In fact, 90% of nursing home revenues come from Medicare and other government programs. So what about the other 10%? Surely it has to come from the pockets of the elderly residents, right?

Well, yes, generally speaking, but the question is how. Because consider this quote, from The New York Times:

In a random, anonymized sample of 700 guardianship cases filed in Manhattan over a decade, Hunter College researchers found more than 12 percent were brought by nursing homes.

The human interest in the Time’s article concerns an Italian-American man who was locked into a dispute with the nursing home in which his wife lives. The man, Palermo, had been dealing with Medicare, which was dragging its feet. In the meantime, the bill for his wife’s care kept rising, and eventually reached $10,000. That’s when, on one of his daily visits to the home, he saw a six-page legal document on his wife’s bed. The nursing home was asking the court, in the name of a Carmelite nun, to be appointed legal guardian of Palermo’s wife’s assets.

The court may or may not go along, but that’s hardly the point. Palermo is 82 years old, and has never been sued in his life. And now, all of a sudden, he had to find a lawyer, supervise a legal strategy, and fend off sharks, hiding behind the habit (if not the skirts) of a Carmelite nun. So even if the court says no, Palermo is being strong-armed.

In the case of my friend, monitoring her husband in the nursing home…well, she’s moderately well off. She doesn’t, however, feel well off, but then, who does? So she has strategies for saving money: she has decided, for example, that the coffee from the coffee machine at Walgreens is really much better than the espresso from the café. So she save 63 cents on her cup of coffee, or some such, and better yet, grabs a handful of napkins, since they’re right out there for the taking, and Walgreen’s doesn’t actually say how many napkins you can take. See? So she hasn’t bought napkins for several years now, and that’s a saving of about $10—maximum—per year!

This is, of course, how the rich get rich, and stay rich, and very likely get richer. But it’s also how poor people stay poor. And while the wife is liberating napkins from Walgreen’s, the nursing home is charging somebody about $7,000 a month for her husband’s care. Yes, the same care that the wife is monitoring every night via her tablet.

The daughter of the man and wife comes from overseas to see her father—and console her mother. I know how it feels: I had to visit my mother in a nursing home, but only because she was recovering from operations, and needed physical therapy. But you take a deep breath, you square your shoulders, and you tell yourself that you will leave in….wait, how can you even think that? That’s your mother in there, and you are calculating how long you must spend before you can decently leave? What kind of beast are you?

And so you stay, and it’s not so bad, especially since your mother has wrangled a private room. Well, actually, I wrangled the room, since I had called the nursing home from Puerto Rico, and my mother had been there before. So they knew her, and they liked her, and they agreed: as long as they could, they would not give my mother a roommate. But then the day came when they had to use that bed, and the roommate was a perfectly nice lady, with a perfectly nice family. And the first thing the roommate did?

Turn on the TV!

Well, you don’t want to miss your soaps, do you?

Well, in my mother’s case…yes. But she was wise in the ways of the world: she knew that if she complained to the staff, it would fall on deaf ears. Yes, I had wanted to bring in a boom box, and all of the Wagner Ring Cycle that it could play, but my mother demurred.

Yes, it was a nightmare, but as nightmares go, it wasn’t too bad. I didn’t have it as bad…

…as Mr. Palermo!  

   

Nursing Home Blues

They had been married sixty years, though the question remains: aren’t they still married? Because they are both alive, and were never divorced: the marriage remains, right?

Ummm…not so much.

Or maybe it does, because the wife has learned, well in her 80’s, to use a tablet computer. And given that she never learned to drive, that’s quite an achievement for an aged lady. But she did it, because even though the nursing home is supposed to be excellent, and is definitely expensive, well, who knows if they are treating her husband right? So she lies awake most nights, and looks at the tablet that is showing her the live feed of her husband. He’s in the nursing home, and sleeping: she’s at home, and monitoring his care.

Nothing about old age is easy, but this particular scenario is especially heartbreaking. Twenty years ago, there would have been no way to know what the night shift was up to in the nursing home, and that might have been a good thing. But now, the elderly wife—who is only technically not a widow—is calling the nursing in the middle of the night, to say that it’s been several hours since her husband has been turned in bed.

I had assumed, by the way, that the nursing home business is booming: happily, I am wrong. According to an article in the Huffington Post, the nursing home industry is projected to decline by 20% by the year 2021. Why? Well, the Baby Boomers haven’t quite gotten to needing nursing homes, and the federal government has gotten the message: it can be cheaper to keep people in their homes.

In fact, 90% of nursing home revenues come from Medicare and other government programs. So what about the other 10%? Surely it has to come from the pockets of the elderly residents, right?

Well, yes, generally speaking, but the question is how. Because consider this quote, from The New York Times:

In a random, anonymized sample of 700 guardianship cases filed in Manhattan over a decade, Hunter College researchers found more than 12 percent were brought by nursing homes.

The human interest in the Time’s article concerns an Italian-American man who was locked into a dispute with the nursing home in which his wife lives. The man, Palermo, had been dealing with Medicare, which was dragging its feet. In the meantime, the bill for his wife’s care kept rising, and eventually reached $10,000. That’s when, on one of his daily visits to the home, he saw a six-page legal document on his wife’s bed. The nursing home was asking the court, in the name of a Carmelite nun, to be appointed legal guardian of Palermo’s wife’s assets.

The court may or may not go along, but that’s hardly the point. Palermo is 82 years old, and has never been sued in his life. And now, all of a sudden, he had to find a lawyer, supervise a legal strategy, and fend off sharks, hiding behind the habit (if not the skirts) of a Carmelite nun. So even if the court says no, Palermo is being strong-armed.

In the case of my friend, monitoring her husband in the nursing home…well, she’s moderately well off. She doesn’t, however, feel well off, but then, who does? So she has strategies for saving money: she has decided, for example, that the coffee from the coffee machine at Walgreens is really much better than the espresso from the café. So she save 63 cents on her cup of coffee, or some such, and better yet, grabs a handful of napkins, since they’re right out there for the taking, and Walgreen’s doesn’t actually say how many napkins you can take. See? So she hasn’t bought napkins for several years now, and that’s a saving of about $10—maximum—per year!

This is, of course, how the rich get rich, and stay rich, and very likely get richer. But it’s also how poor people stay poor. And while the wife is liberating napkins from Walgreen’s, the nursing home is charging somebody about $7,000 a month for her husband’s care. Yes, the same care that the wife is monitoring every night via her tablet.

The daughter of the man and wife comes from overseas to see her father—and console her mother. I know how it feels: I had to visit my mother in a nursing home, but only because she was recovering from operations, and needed physical therapy. But you take a deep breath, you square your shoulders, and you tell yourself that you will leave in….wait, how can you even think that? That’s your mother in there, and you are calculating how long you must spend before you can decently leave? What kind of beast are you?

And so you stay, and it’s not so bad, especially since your mother has wrangled a private room. Well, actually, I wrangled the room, since I had called the nursing home from Puerto Rico, and my mother had been there before. So they knew her, and they liked her, and they agreed: as long as they could, they would not give my mother a roommate. But then the day came when they had to use that bed, and the roommate was a perfectly nice lady, with a perfectly nice family. And the first thing the roommate did?

Turn on the TV!

Well, you don’t want to miss your soaps, do you?

Well, in my mother’s case…yes. But she was wise in the ways of the world: she knew that if she complained to the staff, it would fall on deaf ears. Yes, I had wanted to bring in a boom box, and all of the Wagner Ring Cycle that it could play, but my mother demurred.

Yes, it was a nightmare, but as nightmares go, it wasn’t too bad. I didn’t have it as bad…

…as Mr. Palermo!  

   

Lady, as Always, Takes Charge!

Well, I knew what it was the moment I happened upon it. But since I hadn’t seen it in six years, why did I know what it was?

I tell myself—that morning six years before was drenched in emotion. It had been only two months since my mother had died, and now my two brothers and I, with our spouses, were standing in the wildflower garden my mother had made in the twenty-acre woods which she owned, and in which she had lived.

OK—correction. The garden was a small affair, smaller than my mother’s living room. And since most wildflowers tend to be rather inconspicuous, as well as fleeting, it was really difficult to tell where the woods ended and the garden began.

My mother had begun the garden after my father died, and thus had called it “Jack’s garden.” He, of course, barely knew a trillium from a dog-tooth violet, and would have snorted at having a garden named after him, but my mother had been a strangely wonderful, practical sentimentalist. He was dead, after all, so if she had wanted to make him a garden? Well, he wouldn’t mind…..

So it had been therapy for her: I could imagine her visiting all her wildflowers—she knew where everything was—and deciding which ones to transplant. It’s therapeutic, after all, these mundane things you do. Clearing out the closets, for example, and facing the inevitable questions: his favorite sweater, he wore it seemingly always, but now fresh eyes see it. And isn’t it a bit ratty? What about those holes on the elbows—had they always been there? Why hadn’t you noticed them? So is anyone at Goodwill likely to buy or need this sweater?

So you are there, weeping a bit over the sweater, which is dumb, really, since your father had no particular love for clothes of any kind. You must do one of two things: discard (read: throw in the trash) or donate (read: give it to Goodwill, who will throw it in the trash). All of a sudden, the decision seems momentous: are you crazy? Who could possibly throw away Jack’s sweater? So there you are, seriously considering taking a sweater back to a tropical island, where sweaters are about as needed as fireplaces.

Now you know you’re crazy….

So she had made a garden for a man who had no need or even love for gardens, and that was the point. Grief is in one sense a stupid emotion: love will make you donate a kidney to your brother, or give a stern dressing-down to your son. But once a father dies, well, what use does he have for your tears? Or a husband, for that matter: the joke in the family was that Franny was going to find herself a gigolo named, of course, Juan. And why not? She had loved my father for fifty years—half a century! Why not have a fling with Juan?

So that morning, a month or two after my mother’s death, we had been in “Jack’s Garden,” and we were not there for Jack. Because later in the day, the memorial service would begin for my mother, and then the next day, we would all disperse. We were picking up our lives again, after the disruption of seeing our mother off, and much of that “picking up” meant going on, emotionally. There is, after all, a time to stop crying. There is a time when your friends really don’t want to hear that you spent the morning sobbing, since you had had the first dream of your mother after her death. And so real had it been that the dream seemed to be real just after you woke up! No, you think, she had been alive: you were dreaming that she was dead!

See?

Right?

It hits you again, just as hard as it hit you all that time ago, when the nurse had his stethoscope on your mother’s chest for a solid minute—you checked, since you were a nurse, too, and knew that it was state law….

But you have work to go to, or a breakfast to make, and you pull yourself together. If you’re a woman, you know that everybody will see your puffy eyes, this morning, but they’ll also see your bright smile. And hear you say, “just fine!” Because you are, after all, just fine. Know what? In six years, you won’t miss her so much. In fact, I am weeping now, just thinking about her, but I also have to confess: for the first time in six years, I forgot the anniversary of her death. Yes, May 3 went by, and not a tear did I shed. So I’m paying her back, with interest….

So I am going on, and we were going on, that day of the memorial service, though we have all gone on a lot more, nowadays, then we had gone on that morning. Which means that everybody was in tears, since my brother, who doesn’t so much make decisions as he herds his brothers, like a sheepdog, into doing the right thing. Which was, that morning, standing in Jack’s Garden. Remember? That garden that Jack didn’t much want, and probably wouldn’t have proclaimed just a piece of damned foolishness, but guess what? Dead men get no votes, Jack!

So why were we standing in the wildflowers / probable-and-or-presumptive poison ivy? You know, the stuff that will send my eldest brother—who inhaled the smoke of a fire burning the weed, and turned hyper allergic—to the Emergency Room? We are there because John, my sheepdog / brother, has decided to get my mother’s ashes, and to bury them, where else? Among the wild flowers and poison ivy of….

Somebody dug the hole. Then, we lifted the bag out of the box. And then came this:

      

“Crem” must mean ‘crematorium.” “Serv” is what, “service?” “SP” is a mystery, as is the “12954,” though I highly suspect the corpse before my mother was “12953….” Anyway, it was on the bag that held my mother’s ashes, and it both secured the bag and identified the ashes.

Which, as you may know, are not really ashes. They are roughly the size of small-grained rice, and it would take a quite a wind to scatter them. So John had taken the tag off the bag, and then looked at it. What to do with it? He turfed and handed it to my eldest brother. And what did he do?

Why me? Had it been because I had been there all the way through her death? Had it been because I had, a bit more than the others, masterminded her death? Or perhaps it is simply the case: the younger child is given the last of everything, from his mother’s milk to his mother’s ashes. Anyway, I held the thing in my hand, and then slipped it into my pocket.

I should have put it, of course, in the hole, along with the ashes. That would have been logical, but had my mother enjoyed the services of Juan, the gigolo? Of course not, so it felt, somehow, totally, totally, important to have this disc that had sealed up the remains of “12954,” or rather….

…my mother.

And so I got to Puerto Rico, after having placed the disc along with the small change into the security bowls at airport security. I pulled off my Wisconsin clothes—the six layers of needed clothing even in June—and pulled on my shorts. Then I emptied my pockets and said, “what in hell….”

Well, I had lost my mother: was I now to lose “12954?” Of course not, so I put the disc under the candleholder in the guest bathroom, and hoped against hope that some guest would find it valuable enough to steal….

And so I discovered it today, after six years, since cleaning is not quite cleaning in my house. It is, in fact, more akin to an archeological dig. And so here I am, as befuddled today as I was six years ago, because you know what? I lost a mother and then substituted her through a book, but I still cannot, I really cannot, bear to throw away….

Lady comes by….

“Take this,” I tell her. “And keep it utterly, utterly safe, because I will never see it again.”

I hand her the disc.

“But…” she begins.

I purse my lips towards my computer: it’s a Puerto Rican thing, why be so rude as to point, when you can purse your lips?

“Tomorrow,” I tell her.

She kisses me, pats me on the head, pockets the disc into the purse that shelters the thousand mysteries, relics, and memories of her life, which is everybody’s life, and my life as well, and now “12954’s” life, as well as, now…

….my mother.