Randy and Patty Adams
It’s 6pm on a Monday, and Patty Adams is at her breaking point. It’s time to make dinner for her husband Randy in their Santa Cruz home, but first she has to empty the urine from his drainage bag, wake him up from his nap and single-handedly hoist his 165-pound frame from his hospital-style bed into his wheelchair. Meanwhile, her 4-year-old grandson is jumping on the queen-size bed—the one she used to share with her husband—wearing nothing but a pair of Fruit of the Looms, shouting her name again and again because he needs her help locating a toy train he has misplaced.
The 58-year-old, who is normally cheery and good-natured, lowers her voice to a whisper so neither of them can hear her.
“This is not easy. I’m dealing with him, and him. And working fucking full-time.” She points to her “summer reading,” a pile of a half-dozen books whose spines haven’t been cracked. Most nights, she doesn’t have time to brush her own teeth. Reading a book is laughably out of the question.
“I’m almost ready to throw the freakin’ towel in,” she says. “He can go back to a skilled nursing home.”
But she’s not going to send her husband to a skilled nursing home. She tried it once, but he got pneumonia, urinary tract infections and diarrhea—and anyway it costs $2,300 a month, almost the entire monthly allotment the insurance agency sends him. If she used that money to put him in a nursing home, she would have to sell the house. It’s better for everyone to keep him at home—but that doesn’t mean it’s any easier.
Patty wasn’t always her husband’s caretaker. All this began two and a half years ago, when Randy, then 59 years old, walked into Dominican Hospital in Santa Cruz on a whim, complaining of a headache. The doctors did a CT scan and found a mass. He called Patty and told her he’d scheduled a surgery for two weeks later.
“He never told me how risky it was. He never even said the word ‘tumor,’” she recalls.
A tumor is what he had, though, on his pituitary gland. And it was bigger than the doctors originally thought, so during the surgery to remove it there were complications. Randy suffered strokes on both sides of his brain during the surgery, and there was bleeding in his brain. He had a subarachnoid hemorrhage.
Remembering the surgery, Patty is still in disbelief. “He was gonna be in the hospital maybe overnight, two days. It was a routine surgery, it was gonna just—he was gonna be fine.”
Randy was a carpenter before the surgery, and fixed everything around the house. Now, a light fixture hangs over the kitchen table with wires exposed. It has been that way for two years. The screen door has ripped and come out of its frame. Patty’s bedroom wall, which was extended three feet to make room for Randy’s hospital bed, still needs exterior paint.
Family and friends volunteered to help initially, Patty says, “But everyone has stopped. No one has come back. It’s just not done. The gutters. We gotta get this fixed. My husband would be dying if he knew this was like this right now.”
In the Dark
At Randy’s parents’ home in Live Oak’s Villa Santa Cruz mobile home park, his family talks about the two weeks he stayed in Dominican after his surgery. They comb over every interaction with the doctors and hospital staff, as if by parsing out the details they could make them work out differently.
Randy’s brother and sister, David and Shelly, remember eavesdropping on ICU nurses and chasing the surgeon, Dr. James Kohut, down in the parking to try to extract any information they could about their brother’s condition, which remained a mystery for several days.
“Bilateral thalamic infarcts and some diffuse bleeding,” was the official diagnosis Kohut gave them. “We didn’t put ‘stroke’ and ‘infarct’ together,” says Shelly. “We were just like, what? ‘Diffuse bleeding?’ I’m thinking, OK, surgery, people bleed.”
It was three days before the family even learned Randy had had a stroke during surgery. Patty found out through a collection of pamphlets hospital staff placed in Randy’s hospital room.
“I didn’t know anything about a stroke. I’m going, why are these in here? What do I need—am I supposed to be looking at these? And they were put in the room for me, but no one told me my husband had had a stroke,” she recalls with outrage in her voice.
The family only got two meetings with the hospital, and a meeting with Dominican’s official patient advocate led nowhere, the Adams say.
Dr. Kohut did not respond to calls seeking comment for this story. Dominican hospital declined to comment as well, aside from saying that they handle all situations on a case-by-case basis.
After two weeks with no sign of recovery for Randy, the staff at Dominican arranged to transfer Randy to Driftwood Healthcare Center, a nursing home on Santa Cruz’s east side. Not only did Randy contract chronic urinary tract infections during the eight months he spent there, but according to the Adams, the hospital didn’t check whether Driftwood accepted Randy’s insurance, which it did not.
“I'm going, wait a minute, Randy goes to the hospital for a surgery and this happens to him and all of a sudden I’ve gotta come up with all this money?” Patty remembers. “I didn’t pay it! I didn’t pay a penny of it. I just didn’t. It’s gone to collections.”
Patty now has a lien on her home for the $17,000 she owes Driftwood.
Nowhere to Turn
According to Kathleen Johnson, the executive director of Advocacy, Inc., a local nonprofit that provides rights protection and advocacy for seniors and disabled adults, the Adams’ situation is all too common.
“We get an awful lot of calls like, ‘My mother was living at home. She fell and broke her hip. She came to do surgery, and they’ve just told her they are discharging her and sending her to a nursing facility in two hours. We don’t know anything about the facility. They’re pushing us to sign the discharge and transfer papers. We don’t know what to do,’” says Johnson, who advises health care clients to be aware that they can ask questions and say no to situations they’re unsure about.
“Acute hospitals are working at a bottom line. They’re looking for an empty bed, period, where the person can be transferred. It may or may not be a facility that can meet his or her needs,” she says.
As great as the need clearly is, shockingly there is really nobody in place to assist families in the midst of a health crisis. While what is needed is an independent advocate, what most families get is “a social worker who’s an employee of the hospital, who is being told, ‘We have to get that patient out, do what you need to do to get it done,’” says Johnson.
The Adams took their case to Brad Corsiglia, a medical malpractice attorney in San Jose, who spent a year and a half investigating it. Shelly had gotten a hold of a report that appeared to show that doctors drained an abnormally high amount of cerebrospinal fluid (CSF) from Randy’s brain—200ml, or the average amount most people carry in their brains at any given time. But Corsiglia found that it was almost certainly an error in the report—if that much cerebrospinal fluid had really been drained, scans of Randy’s brain should have shown sagging. Instead, all they revealed was bleeding—a normal risk of surgery.
Eventually he determined he couldn’t prove Randy’s injuries were due to malpractice and gave up the case.
“It’s bad luck, basically,” Corsiglia told the Weekly. “[Randy] unfortunately suffered a very bad complication from this surgery. The bleeding was a rare complication but it’s a recognized complication. There’s nothing anyone can do.”
He stresses the importance of families of hospital patients being aggressive in asking questions and demanding quality care for their loved ones, because it may mean the difference between life and death.
“Don’t assume that just because you’re in the hospital that the doctor’s going to do his or her job,” he says.
The Adams discovered that every attempt to demand accountability was a dead end. There was no one to pin the blame on, and no one but them responsible for picking up the pieces of Randy’s shattered existence.
“You can’t rely on [hospitals] to guide you through the system,” says Corsiglia. “That’s not their job. That’s not anyone’s job.”
Hidden Risks
Since then, the Adams have been living out every American’s health care nightmare, the one about which we want to say, “That could never happen to me.” The thing is, though, that it actually could happen to any of us.
“Nobody wakes up when they’re 45 years old and decides one of their goals in life is to be placed in a skilled nursing facility,” says Advocacy, Inc.’s Johnson. “Yet the statistics show that one in every three of us will spend time in a nursing facility.
“Truth be known, we are in the dying process the minute we’re born. And that’s not anything that anyone feels comfortable with thinking about in our culture,” continues Johnson, “because when we do it causes us to recognize our own mortality, which we don’t want to think about. There’s ‘close the door’ syndrome. There really is. And then when crisis hits, the preparation isn’t there.”
Patty brought Randy home in July of last year, and since then the weight of caring for another individual 24/7 has been taking its toll. Randy needs help with everything. She works full-time for the Loma Prieta school district and has an aide come take care of him for five hours, four days a week—the family members pool their resources to pay for it. But when Patty is in the house, her work schedule is nonstop.
“It is a weight that no person can endure,” she says. “It’s like dressing a corpse. You’re just making this person stay alive. And it’s heartbreaking. You just want to scream. You want to scream. Then you get composure of yourself and you don’t. You figure it out.” She laughs a little. “You drink a lot of wine.”
Because Randy had taken out a long-term life insurance policy for himself, and is on Patty’s HMO, he receives $2,800 a month, which Patty uses to pay the mortgage on the house. Almost all of his equipment and food (including supplements like $20 canisters of whey protein), plus renovations on the house to build him a wheelchair ramp and a handicap-accessible shower, are paid for out of pocket by Patty and the rest of the family. Patty says some people have suggested she divorce Randy, simply because of the economics—if he had no family or support the state would take care of him.
Incredibly, her situation is not uncommon. Alain C. Enthoven, Ph.D., a health care economist at Stanford, says it is sometimes the case that a decent private health care policy can actually be worse for a person than simply being in poverty and getting covered by Medi-Cal or Medicaid. “Your ordinary commercial insurance policy is not going to provide in-home help,” he says. “Now if he was poor enough, he would be able to be in a nursing home [for free]. A lot of the money in Medicaid is spent on people in nursing homes.”
Standing in the kitchen, Lia, Patty’s 32-year-old daughter, does not hide her outrage at the situation—she just isn’t sure where to direct it. “It seems like the hospital should have like some catastrophic outcome insurance, or people could take out a policy for a catastrophic outcome. I don’t know. It’s weird that there’s no like ‘what happens if you’re dead but not dead’ outcome? You know what I mean? Cause it’s expensive to be dead but not dead.”
Trapped Inside
Perhaps the most disturbing part of all this is that Randy is still very much in there. He can answer multiple-choice questions, and signal his approval or disapproval of things with a thumbs up or thumbs down. His family claims he can even work arithmetic and play blackjack. But he can’t speak or walk, or stand up on his own. Patti has to tape one of his eyelids up at a time so he can see (if both are open he has double vision).
He can move his hands a little bit—Patty got him a kitten that he can pet. But when it’s time for him to eat she has to guide his hands. He drops so much food that the dogs gather underneath him, knowing they will get scraps. And she has to stay in the room with him to make sure he doesn’t choke. “Sometimes he forgets how to swallow,” she says.
“He’s here, but it’s almost like he’s a piece of furniture,” says Patty. “We just wheel him from room to room.” All the doorframes in the East Side Santa Cruz home she shares with Randy, her two grown daughters and grandson Kaleb, are battered from Randy’s wheelchair, with black skid marks and scratches, and chunks knocked out of them.
Kaleb’s main interaction with his grandfather is riding on the back of his wheelchair when Patty pushes him from the bedroom to the kitchen. “The other day he said to me, ‘Why is Pop Pop dead?’” says Patty. “He thought he was, because he doesn’t talk.”
Lia moved home from Nashville, Tenn. after Randy’s surgery. Her “maiden voyage” away from her hometown, as she calls it, only lasted about six months. “I had just moved out there when he was diagnosed with the growth or tumor, whatever you wanna call it,” she says. Now she helps Patty while simultaneously launching a catering company. As much as she hates watching what this experience has done to her mother, she says she and her three siblings don’t want to sink into the quicksand along with her. “It doesn’t make sense for five people to be done with their lives over one person, you know what I mean?”
“She can’t do anything,” Lia says of Patty. “Her life is work, care for my dad, and that’s it. She’s not our mother. She’s not [Kaleb’s] grandmother. She can’t go to yoga. She can’t brush her teeth at night. Her life is 100 percent consumed with caring for my dad.”
She laughs bitterly. “It’s crazy. It’s totally crazy. It’s totally crazy.”
The Adams are currently raising money to purchase a handicap-accessible van. Those interested in donating to their cause can do so via Bank of America, account number 164103998874. Patty can be contacted at [email protected].
