by Jane Heller
Judy Hartnett: “My husband, Paul, was diagnosed with MS thirteen or fourteen years ago. At first we thought he was just klutzy; he couldn’t walk with you on a sidewalk without literally bumping into you. Then his gait got worse. He started by asking the internist about it at his annual checkup and the internist said, ‘Maybe you have a drug or alcohol problem.’ Paul was like, ‘Thanks a lot, but I’m pretty sure I’d know if I had one.’ The next doctor sent him to a specialist who checked for a mini-stroke. He didn’t have anything like that. Other doctors said, ‘Eat better. Try this pill. Brush your teeth more.’ No one said anything smart—just dumb feedback.
“It was a long, slow road to a definitive diagnosis. Finally, a neurologist sent us to the University of Miami. The doctor asked Paul if he could walk back into the office so he could observe him walking and doing other physical things. He never laid a hand on Paul. All he did was watch. When he was finished watching, he said to Paul, ‘You have multiple sclerosis. There’s no doubt in my mind.’ I welled up and just sat absolutely silently.
“Paul turned into Barbara Walters and said, ‘Okay. Let me just take some notes and we’ll get started.’ He was the kind of person you’re supposed to bring with you when you’re a patient. But I was numb. I thought, what the hell does this mean? Where is this going? Someone’s going to completely depend on me? No one likes when their parents get sick, but you kind of expect it as they age. You don’t expect it to be your husband. It was an overwhelmingly awful thing. Paul had always been fiercely independent—we both were—so I just didn’t think we’d ever have to deal with this.”
Jeanne Phillips: “I worked with my mother for many years, long before she got Alzheimer’s. As she began having problems, there would be glitches in the ‘machinery’ of producing the column. I would try to put out the little blazes that were popping up in front of me without realizing they could become a forest fire. It started with episodes of forgetfulness or disorganization. I couldn’t accept the implications of what was happening. After 9/11, my husband and I picked Mom up to take her out to dinner. Her housekeeper mentioned that Mom had been glued to the television set all day. When we started to talk at dinner about the horrific tragedy, she asked, ‘What tragedy?’ That was a shock.
“Then there was another time when I was talking with Mom about her twin sister. There had been a rift in the family for many years—it was well known. When I alluded to it, she asked me what I was talking about. Later, she had a personality breakdown. That’s a strong word for it, but it was like a personality glitch. It was very traumatic to me, and at that point I understood that she was going to need more help than I was capable of giving. But you don’t spend time beating your breast and saying, ‘I can’t believe this is happening.’ You just deal with it. If there’s something that comes up, you deal with it.”
Suzanne Preisler: “My sister got ovarian cancer when she was very young—only thirty—and it took awhile for it to be diagnosed. She started showing symptoms during the time she was trying to get pregnant. Her skin color didn’t look right. She looked very drawn. She was bloated. It was amazing to me that the doctors she was seeing weren’t picking up that there was something wrong with her. She began having very sharp pains in her abdomen. It turned out that she had a tumor the size of a grapefruit, so she had surgery to find out what was happening.
“By the time she was diagnosed, she was advanced. I started crying and kept crying for about two days. I had never lost anyone in my family. To think about losing the youngest one hit me like a ton of bricks. All we remembered was Gilda Radner and the terrible time she had, so I thought my sister was in store for the same thing. And since her husband wasn’t up to being her primary caregiver, it was sort of left to me.
“With my mom, she and my sister-in-law lived in Florida and they used to go shopping once a week. One Thursday, my sister-in-law said to my mother, ‘Your eyes don’t look good.’ When you have pancreatic cancer you get jaundice, so her eyes were a little yellow. My sister-in-law insisted that she go to the doctor, and they immediately put her in the hospital. At the time I didn’t know anything about pancreatic cancer, so when my brother told me she was going to have surgery for it, I said, ‘Should I come when she’s out of the hospital so I can take care of her?’ He said, ‘No, you better come now.’ It was terrible news.”
Karen Prince: “My husband, Andy, and I were shopping at Home Depot and the first thing that was strange was that he said he felt dizzy when he looked up but not when he looked down. We came home and I started preparing lunch and he was sitting at the table. All of a sudden he just keeled over on the floor. The first thing I thought of was a heart attack. But when I got down on the floor, the right side of his body was cold and the left side was not and there was just gibberish coming out of his mouth so I thought it was a stroke. I also thought it might be diabetes because he had that, but I knew his blood sugar wasn’t low. I called 911.
“When the ambulance people came, they said, ‘Well, it’s probably his blood sugar.’ I said, ‘No, it isn’t his blood sugar. He can’t use his right side. He’s speaking gibberish.’ I was a nurse so I knew what I was talking about, but I was not calm. All my training was not helpful. When it’s your own, it’s different.
“The ambulance people got him on the gurney and out the door very fast. Then it was hours and hours of waiting at the hospital. I was thinking, what’s going to happen down the line? Am I going to be able to keep the house? Finally the neurologist came out and told me Andy had definitely had a severe stroke. He couldn’t swallow. He couldn’t do anything. He was completely dependent. He was breathing on his own but that was it. When I went in to see him, I tried to keep it together because I didn’t know if he understood anything at that point.”
Harold Schwartz: “My son Joseph was thirty-four and living in Washington, DC, when he was diagnosed with ALS. He had told my wife and me that sometimes his fingers felt a little cold, and I thought it was Raynaud’s disease; I’ve known a lot of people with that. Also, he was a marathon runner in incredible condition, and he noticed his running was getting a little more difficult. We didn’t think anything too much about it. Then he called and told us he had gone to numerous doctors and it sounded like he might have a brain tumor.
“It turns out it was Lou Gehrig’s disease. I remember very clearly that he said, ‘I do not feel like the luckiest man in the world.’ I told my wife, ‘Obviously Joseph’s life has changed, but our lives have changed too.’ I was devastated. The prognosis for Lou Gehrig’s disease was two to five years. At one point, a neurologist told him he had two weeks to live. Joseph asked us to make funeral arrangements, go buy a plaque, pick out a casket, and we did that. But he lasted almost thirteen years with the most incredible spirit.
“It was about three years after he was diagnosed that my wife developed Parkinson’s. She never had tremors. She had trouble writing. We sent her to a hand doctor. She called me at the office in tears and said, ‘The doctor says I have Parkinson’s.’ I knew it was not a good disease, but I didn’t think it would be as bad as it ultimately was. I guess I was naïve or stupid. It didn’t hit me the way ALS did.”
So yes, people have a hard time absorbing bad news, and there’s plenty of it to go around. Not a day goes by that I don’t hear about this one’s son who got that terrible thing and this one’s mother who got that terrible thing, and the truth is we’re all going to get some terrible thing before it’s all over unless we’re, say, Betty White.
But this is not a bad news book and I am not a Debbie Downer. What I’m going to prove to anybody who sticks around long enough to read the whole thing is that the caregivers I spoke to managed not only to cope with bad news but also to experience genuine moments of happiness. They rolled up their sleeves and found ways to deal, as did I.
CHAPTER 3
Making Emergency Room Visits and Insanity Mutually Exclusive
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“Most people are reasonable about the wait in th
e ER. And those people who aren’t? They could wait twenty minutes and complain that they’ve waited too long.”
—DR. ILENE BRENNER, emergency physician
I never watched ER when it was on TV—absolutely failed to notice the George Clooney phenomenon in its infancy. Not because I have anything against medical shows, mind you. In fact, as a kid I never missed an episode of Dr. Kildare, and I still remember the two-parter where Richard Chamberlain fell in love with Yvette Mimieux who had a seizure while surfing and died. I guess I was just busy having a life on Thursday nights when ER aired. What can I say?
The point is that I didn’t come into this caregiving thing with any preconceived notions about emergency rooms, pro or con. But the longer I hung around Michael, the more I could tell that there was nothing TV-showish about them, nor did I ever spot a doctor who looked remotely like George Clooney. (I would have remembered, trust me.)
Michael and I were living in LA when he really gave our local ER a workout. Our place wasn’t far from Cedars-Sinai Medical Center, luckily, but I can’t even count how many trips we made there over a six-year period. I’d stuff him into the passenger seat of my Porsche, which we had dubbed “the ambulette,” and off we’d go. He’d either be on the verge of an intestinal obstruction or actually have one, or sometimes he’d come down with creepy, inexplicable symptoms ranging from a freakishly swollen left cheek and neck (tooth gone bad) to dizzy spells that bordered on actual fainting (low hemoglobin due to internal bleeding). He gets infusions every six weeks of a genetically engineered drug called Remicade, which helps to manage his Crohn’s but suppresses his immune system and allows for all sorts of secondary infections, most of which necessitate a trip to the ER.
Why didn’t we just go to his doctor during normal business hours?
Please.
My husband never gets really sick unless it’s a weekend or a holiday. I know I’ve mentioned this little quirk of his before, but it bears repeating. It’s as if his body waits for Memorial Day, Labor Day, Christmas Day, and New Year’s Day to fall apart.
At first, I’d view these jaunts to the ER as an adventure—an opportunity for me to be Wonder Woman, saving Michael from yet another threat from Planet Death. My adrenaline would start pumping and my brain would tick off all the plans I’d need to cancel, and I’d throw his insurance card, wallet, and one of his sailing magazines into a bag and whisk him away. I had superhuman strength. I walked and talked very fast. I was ready to do battle.
“You okay?” I’d ask him every six seconds, as I’d speed over to Cedars.
“Yeah,” he’d say. “But could you please slow down? You’re driving like a maniac.”
“Oh. Sorry.”
When we’d get to the ER, I would sit with him in the little triage room where the nurse asks what’s wrong, what medications are you on, any allergies, do you smoke. Every time Michael would open his mouth, I would answer for him. I couldn’t help myself. I was way too hyper to shut up.
When all the information was provided, we’d be instructed to join the 9,000 suffering individuals who’d been camped out in the waiting area for hours. They would cough on me. I would try not to breathe their germs. Many were not English speaking, since LA has a large population of Russians, Albanians, Persians, and others from lands I’ve never been to. There was a lot of moaning in foreign languages, in other words. There was also the homeless contingent that would be drunk and disorderly and get into fights with one another. One time a guy had to be Tasered by security right there in front of everybody. Another time three men came staggering in holding their faces, which were the color of canned tomatoes. I later learned that one of them was a severely depressed person who’d tried to jump off a bridge and kill himself; the other two were well-meaning police officers that had intervened by popping the suicidal guy with pepper spray. The wind had been blowing in the wrong direction, apparently, and all three of them got pepper sprayed, mostly in their eyes. I hate when that happens.
“Why aren’t they taking you next?” I’d say to Michael after an hour or so. “That woman in the white turban just went back. We were here before she was.”
“This isn’t the DMV,” he would remind me. “They take you according to the severity of your problem.”
Eventually, they would come for Michael and I would insist on going back there with him and they would say no even after I played the “But I’m his wife and he needs me” card. After awhile, they’d come for me and I’d act very stoic while the doctor explained that Michael would have to be admitted into the hospital. He was always admitted. I had never once taken him to the ER and seen them send him away with a prescription and a “Good luck.” After many, many hours I would go home alone and crash.
By the time we moved to Santa Barbara, where we live now, I had become far more blasé about Michael’s trips to the ER. Well, not blasé, of course. Just less demonically possessed.
“I’m kind of busy,” I’d say unless he had actually collapsed and stopped breathing. “Maybe you could drive yourself over there.”
I’m kidding—sort of. There were times when his emergencies were only emergencies because he was Michael, the bubble boy who could pick up an infection if someone in the next town sneezed, and because they occurred, as usual, on a holiday.
I think I just came to dread the ER and tried to avoid it whenever possible. I was worn out by the endless waiting you have to do, the uncertainty of the diagnosis and treatment, the anticipation of losing Michael to yet another hospital stay and my having to be at home without him.
Still, given that the ER will be a part of my life as long as I’m married to a man who frequents them as often as most people frequent Starbucks, I figured I’d better educate myself about what really goes on there.
I sought out Ilene Brenner, MD, an ER doc at a major hospital in Atlanta. Ilene not only works twelve-hour shifts—at night, yet—but also has managed to write a couple of thrillers, a screenplay, and a nonfiction book called How to Survive a Medical Malpractice Lawsuit. Talk about multitasking. She was kind enough to let me barrage her with questions.
Jane: Why is there such a long wait in the ER? Are you guys sitting around playing Scrabble on your iPads or something?
Ilene: Last night I had a patient who had a heart attack and basically shut down the emergency department. When you have a patient who needs all your resources, the person with an earache is going to wait. That’s why we have a triage system; the sickest patients come back first and everybody else experiences gridlock.
Jane: Who qualifies as a “sickest patient”? Is there a pecking order?
Ilene: My hospital uses the five-tier system. If you’re in the first tier, you come in by ambulance. You’re in cardiac arrest or you need a breathing tube or blood is pouring out of you, that kind of thing.
Jane: Sounds reasonable.
Ilene: The second-tier patient may or may not come by ambulance but has clear signs of having a heart attack or stroke—someone who needs immediate attention but is not quite dying.
Jane: Not yet anyway.
Ilene: The tier-three patients are the most common kind I have. They’re not going to die but their symptoms are a concern. Like they have toe pain that’s so bad their blood pressure is 200 systolic, which is very high.
Jane: Toe pain gets you into the third tier?
Ilene: Well, it’s their blood pressure that’s abnormal enough to get them back faster. And almost all patients with abdominal pain are level three because they usually need more complicated workups. The same goes for people with chest pain if they don’t appear to be at death’s door.
Jane: So Michael must be a number three when he comes in. What’s number four?
Ilene: Almost everybody else: people with an earache, a sore throat, a runny nose, a mild cough.
Jane: Level five must be for hypochondriacs.
Ilene: We shouldn’t even see level fives in the emergency department. They don’t actually need medical care. They need suture rem
oval or someone to eyeball something and reassure them that it’s okay.
Jane: When I go with Michael to the ER, I always try to be a good advocate for him. It gives me the sense that I’m not helpless.
Ilene: So you bring his medical records?
Jane: Um, no.
Ilene: You should. My ideal caregiver is someone who has all the patient’s records with them, plus a list of all their medical problems, all the names and phone numbers of their other doctors, and a detailed list of every medicine they’re taking with the dosages, along with a copy of their EKG if they’ve had one.
Jane: Oh, come on. Who keeps copies of that stuff?
Ilene: You’d be surprised. I once had a patient who was visiting from India. He had everything with him and the information accelerated his workup dramatically and we got him the treatment he needed much faster. Until we have medical records that can be accessed as easily as money from an ATM, you as the caregiver are the one the doctor will look to for all the information.
Jane: Got it. Is it kosher for caregivers to ask questions? I always have a million of them when I bring Michael to the ER, and I get the feeling the doctors find it annoying.
Ilene: If you have questions, you should definitely ask them, but the doctor has a routine and if you interrupt it, the diagnosis could take twice as long.
Jane: What’s the routine?
Ilene: I come into the room and ask, “What brings you here today?” And then the patient starts talking and based on what they say I ask follow-up questions. This continues until I get an idea of what’s going on. Then I’ll do the physical exam and pinpoint the problem. So wait until the tail end of the exam to ask your questions, which will give the doctor extra information about the patient that could be important.
Jane: Why are some doctors such sourpusses? Seriously, some of them don’t have much of a bedside manner.
