The Partner Who Dies First, Wins

Negotiating serious illness in America, you better have a friend.

We used to talk about sex and then it was careers but now the big subject is Switzerland. As in medically assisted suicide.  I wish the places were more spa-like; like that opening shot of Audrey Hepburn and Cary Grant in “Charade”, sitting on the verandah surrounded by snow-capped mountains; from what I’m reading they’re bleak little rooms in budget hotels.

Still, the process has dignity, there’s no stumbling around a nursing home with a load in your pants. Or stumbling around the American healthcare system on your own when you’re old and sick, which is pretty much the same thing.

That’s what my single friends, particularly those of us without children, spend a lot of time talking about these days: Who’s going to look after us when we’re too weak to make ourselves a meal, too poor to send out for it, too addled to remember to eat?

Who will hire the lawyer to figure out how to keep the nursing home from throwing us out when our money is gone? Who’s going to find us an at-home aide who won’t gaze into their phone for hours, leaving we, who once fret over a skin tag on our necks, slow-rotting with bedsores? 

Being the last one standing does not sound that great when you’re in your seventies. Now, it’s more the one who dies first, wins.

“How’s Herb?” people have been asking me the last few months.

This is a two-word question requiring a half hour answer; a detailed retelling which made me so anxious that after, I often took a pill.

Let’s ease into it with “Who’s Herb?”.  

Herb is my best friend, 83, a humor writer who’s had slow-moving Parkinsons for ten years. When I had breast, then ovarian, cancer over thirty years ago, he was at the hospital. After the heavy chemo treatments, he moved into my place and cared for me.

Then, this March, it’s my turn: Over a few weeks, Herb becomes so weak he can barely stand and I drag him to the emergency room at N.Y.U.-Langone.  Herb’s blood pressure is a terrifying 108/45. His hemoglobin is 8.7. The normal range for hemoglobin is 14 to 18. At under 7, doctors transfuse.    

It’s some form of lymphoma, the doctors say, but they cannot treat it because they cannot determine which kind. They keep Herb for ten days, as he loses weight and faints on a nurse and I do the healthy partner thing: Angle to get him a better room; chew out the hematological fellow who tells him there are three spots on his abdomen which appear to be cancer (they are not); call around for a second opinion; be there, which, I remember from my cancers, is the most important thing: Somebody who loves me is here and looking out for me. I have an advocate.  

Then, while the hematologists wait for the results of the more advanced tests to come in, Herb is dispatched, on a stretcher, from the hospital to a short-term rehab and nursing facility. Or perhaps I should say, into the hands of the American healthcare system, though that’s a phrase that makes you run for the exits, isn’t it?

How about this: Then Herb is dispatched on a stretcher to a rehab and nursing facility and I recall the night I spent with a now-famous actor and it was the second-best sex I ever had.    

 “Here’s what you need to know about Medicare coverage,” the N.Y.U. - Langone social worker has told us. “The first twenty days, they cover you 100 percent; the next 80 days, 80 percent. “You – or your insurance – are responsible for the rest.”

“A hundred days,” I think. “That gives us lots of time while the doctors figure this out.”

The rehab/nursing home place has a shiny new gym, support staff who struggle with English, and an impatient social worker. I meet her when she comes to Herb’s room to discuss his “care plan”, accompanied by a rep from a private home health aide company I shall call, Gotcha, Granny!

Why do Herb’s social worker and the Gotcha Granny rep arrive together? Why is Gotcha Granny, which charges $36 an hour for home aides, the only home aide company recommended by Herb’s rehab place? Why, when I later ask the social worker about other home aide companies does she tell me Herb’s rehab place has used Gotcha Granny for years and nobody has had any problems? This are some of the many questions in the great American healthcare system for which I do not have an answer.

The information with Herb’s social worker at our first meeting comes so thick and fast that I have to follow up with both the social worker and her boss, the equally impatient head social worker, for clarification.

The highlights: Nice you have Medicare Part B, but it probably doesn’t cover the 20 percent you’re responsible for after the first twenty days. Here, that’s $194 a day.  Well, yes, Medicare gives you 100 days, but we don’t keep patients around that long – with us, it’s usually two to six weeks.  Herb lives alone, what if he’s not well enough to go home?  We’d get you into a nursing home, where you would spend down to Medicaid, but really, there are so many ways this could go, X, Y, Z, it could make your head spin. Slow down because you’re trying to take notes? You’ll absorb this much better if you don’t take notes.

(Excuse me, I have an IM from someone who signs herself, Medicare Newbie: What does “spend down to Medicaid” mean?

Oh, that’s so sweet. You are new here. Under Federal law, nursing homes are not allowed to kick out patients who’ve run out of money if they have Medicaid or have merely applied for it. So the patient gets into the best nursing home with the most beautiful grounds they can while they still have a few bucks and spend it all on the home until they qualify. Sure, when that happens the nice nursing home may move the patient to a crummy room, but you’ll still have the beautiful grounds. Provided someone in the family hires you a private aide to wheel you out there.)

But back to doing the healthy partner number:  I take Herb, in taxis specially outfitted for wheelchairs, to medical consults. (You’re an elderly sick person who doesn’t have anyone to take you to the doctor? No problem. There’s a service that will do it. It costs $350 for the first four hours.) 

The most succinct medical summing up of Herb’s condition: The doctor, who asked what’s going on, says Herb’s bone marrow is far’kakt – Yiddish for gone to shit. The most poetic: “Your body is devouring its red blood cells.”   

Extra exciting moments: Taking Herb, on the two times his hemoglobin drops dangerously, to the emergency room, a wait made particularly exhausting one evening when the ambulance the nursing home calls takes two and a half hours to arrive.  It’s not the ambulance you call for when someone has a heart attack, a nurse at Herb’s rehab explains, it’s the Senior Care ambulance. We get to the E.R. after midnight, they start transfusing Herb around 4 a.m., and when a nurse spots me trying to catch a nap on a bed adjoining Herb’s, he tells me I have to get up. Beds are only for patients, he says.

“Officious prick,” I think.

Then I go out into the street, where it’s starting to get light, to try to find a cab. Middle of the night in New York when you are 76 and stupid from lack of sleep and afraid your best friend is dying feels very different than middle of the night in New York when you are 24 and walking up Bleecker Street with a guy you have been talking with all night, grabbing still warm rolls from Zito’s.   

 Herb, who came into the nursing home unable to walk, makes progress despite his severe anemia. He is walking with a walker; he’s going up and down stairs in the rehab gym. One spring day we go outside and Herb, with his walker, makes the half block to a corner park and we are thrilled.  

Then, four weeks into his stay, there’s a setback. Herb has no strength to get out of bed; his appetite disappears; he drops weight. He’s so frail he seems to be disappearing into the bed.   

“I wouldn’t be surprised if he dies tonight,” a friend tells me. 

A few days later, the social worker comes to Herb’s room and tells him his discharge date is in nine days.

“I guess you didn’t hear about my setback,” Herb says.

Then he calls me.

Listen up, caretakers, for I am about to reveal a magic phrase that will never fail to buy you time when someone you love is about to be kicked out of a rehab facility: You call the social worker and yell, I am the Medical POA and you are NEVER to have a conversation about discharge without me!

Oops, sorry, that’s not it. And by the way, talking truth to power to the social worker who gets a vote on whether you stay or go in a skilled nursing facility: Really bad idea.

Here is the magic phrase: “cannot safely perform the activities of daily living at his home”.  Observe the way I employ it in the e-mail I dispatch to the director of Herb’s Nursing Home:

“Herb lives alone. He cannot get dressed by himself. He cannot go to the bathroom by himself.  He cannot safely perform the activities of daily living at his home, nor can he afford an aide 24/7 to help. He has Parkinson’s as well as a still undiagnosed blood disease, discharging him at the proposed time would endanger his life.”

Two hours later, I get a call from the social worker, who seems to dislike me as much as I dislike her, that Herb’s stay has been extended nine days, to the following Thursday. If I want to appeal it to Medicare, I won’t be able to do so until the Monday before. Then, feeling generous, the social worker amends it to Friday.

That means I have to find a reasonably priced nursing home for Herb in a week. There are no reasonably priced nursing homes in New York. The nicest one I know, a spread overlooking the Hudson River, just north of Manhattan, has a daily rate of $1,025. Rehab costs an extra $150 an hour. A dreary but decent nursing home is $630 a day for a semi-private room, $668 for a private and an extra $300 a day should the patient want therapy. Private at home aides at $36 an hour are starting to look like a bargain, particularly when you deduct the $200 a day from Herb’s long term health insurance. And Herb will get to be in his own apartment, where, after two months in medical institutions, he desperately wants to be.

Lawyering up? Always a fine alternative. I call the elder care lawyer I used ten years ago when my mother went into a nursing home. (Rate: Now $600 an hour.) He says his firm hasn’t taken a Medicare case for years, you never win.    

Medically, we are finally making important headway. An oncologist at Memorial Sloan-Kettering has diagnosed Herb with Marginal Zone Lymphoma, a rare but highly curable cancer, that she can treat with four weekly treatments. The first is scheduled for six days before Herb’s discharge date.

To appeal a Medicare decision, you call Livanta, an independent medical review board. I write my online appeal as I sit beside Herb in Sloan-Kettering, as he gets his first treatment.  The heart of it is a letter from Herb’s oncologist, explaining that Herb’s newly diagnosed lymphoma has left him extremely weak and that discharging him on the proposed date would be unsafe. 

“I ask that the discharge date be extended,” she writes.

A letter from the doctor at the best cancer hospital in the country saying that discharging a  patient will not be safe? They won’t ignore that, I tell friends.

 Less than 24 hours later, they do.

To do list when a seriously sick friend is going to be be thrown out of a nursing home in five days: Find a private aide agency which specializes in Parkinson’s patients and is not affiliated with his nursing home; restock his fridge; bring in cleaning lady; make a half dozen sets of keys for aides; take a moment to feel good that you had the foresight to have the super install grab bars in the bathroom weeks ago;  install shower hose with niece and find it does not fit 80-year-old New York City fixtures; deputize friends to find the best I’ve-fallen-and-can’t-get-up- alert; pick up seriously sick friend who has to be taken to car in wheelchair during a driving rainstorm; stock the enormous pill box you bought him with his twenty daily pills because home aides are not legally permitted to dispatch pills; burst into tears.

Now, two weeks after being tossed out of the nursing home, Herb’s chemo appears to be already working. He is gaining weight and getting stronger. But he still requires aides 12 hours a day to cook for him, help him shower, do laundry, and accompany him with his walker when he leaves his apartment.

The American healthcare system has not entirely abandoned Herb – Medicare will send a rehab person to his home twice a week for two months.

Herb also got a letter from Livanta saying that their review of Herb’s medical record indicated that he was “able to ambulate 100 feet with a walker”, “has made good progress” and “further inpatient skilled nursing facility level of care is not deemed medically necessary.”

His cancer, inability to care for himself, and the letter from his oncologist were not mentioned.

I cannot tell you how good Switzerland is looking.