Of all the caregiving pairings, taking care of a parent with Alzheimer's can be one of the most challenging. There are the role reversals, the struggles with siblings over care and the history of the relationship itself, sometimes strained or even hostile, that make for complications.
Dorla Walker, 54, takes care of her father, Thomas Rowe, 82. Exhausted and frustrated, Walker tries to balance her full-time job with watching over her father, who is in the moderate stages of the disease. With a tendency to wander and lash out, Rowe has been "blacklisted" from nursing homes, his daughter says, and scares off many of the home health aides she hires.
Meanwhile, Lynn Decker, 44, and her partner, Heide Leuthner, 41, also try to maintain busy work schedules as they care for Lynn's mother, Emma, 77. Nearly a decade into the disease, Emma spends her days babbling incoherently and walking in circles. Decker wants to keep her mother at home, but acknowledges she is losing patience as the disease progresses slowly, and she's overwrought at seeing her once-glamorous mother deteriorate before her eyes.
Lynn and Emma
Nighttime, October 2007
Lynn Decker and her partner, Heide Leuthner, walk into Lynn’s mother’s room to prepare her for bed. The room is sparsely furnished to keep Emma safe: a large television tucked into the corner, a couch fitted with a rubber sheet pressed against the wall and a hospital bed placed next to a picture window.
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The couple took down Emma’s china cabinet several years ago, fearful it would fall on her as she wandered around the room. The 77-year-old spends most of the day shuffling in circles as she chants gibberish, broken up by the occasional coherent phrase, her mind lost in Alzheimer’s disease.
Heide helps Emma off the couch. “Hello, Emma, hello pretty girl,” Heide coos to her. Emma, dressed in an oversized flannel shirt and wrinkled twill pants, offers back the wide, innocent grin of an enchanted child. Heide puts an incontinence pad on the bed while Lynn changes her mother into her pajamas. They realize they haven’t taken Emma to the toilet, and so they lead her into the bathroom and sit her down. If they leave her there long enough, instinct will kick in.
When she’s done, Lynn takes her fragile, 90-pound mother by her hands. “Come on, Emma!” she says enthusiastically as they head back into the room. Her mother stopped responding to “Mom” years ago.
Lynn places a restraining pad around her mother’s waist and helps her into the hospital bed, then slides the metal side guards into place. She reaches under and ties the pad around the bottom of the mattress. As Emma continues to babble, Lynn pulls up her mother’s yellow SpongeBob SquarePants blanket and gently rubs her head to try to get her to settle down for the night.
From a corner overhead, a camera looks down on them. A small monitor on Lynn’s desk relays the image. It allows her to stay on her side of the house while keeping an eye on her mother.
Lynn, 44, had become tired of going back and forth to check up on her. She felt they weren’t keeping a good enough eye on Emma, while realizing that, “like a kid, you can’t be with them 24/7.” Nearly 10 years into the battle with Alzheimer’s, Lynn’s mother has become her child.
“It’s like having a kid without the rewards,” Heide notes. “You give, give, give, but you don’t get anything back.”
Dorla & Thomas
Nighttime, November 2007
Dorla Walker has had it. All day at work at her hospital job she fielded calls from an upset home health aide. Dorla’s father, Thomas Rowe, was beating her up, the woman complained to Dorla.
“I don’t know what to do,” Dorla sighs later in the day as she sits down at the kitchen table, her eyes bloodshot.
Since her 82-year-old father moved into her Baldwin home three weeks ago, Dorla has struggled. A wanderer with a pugilistic temper and a ferocious independent streak, Thomas has knocked down the white plastic gates — the ones used to restrict toddlers and pets — that she has placed around her home’s doorways to contain him, and has headed outside.
He’s pushed her out of his bedroom and locked the door, refusing to let her back in. He’s wrecked his bedroom, swatted at her with his fists, and shouted for her repeatedly in the middle of the night. Since taking him in, Dorla, 54, has not had more than two straight hours of sleep. She also has not been able to go to her church, Perfecting Faith, in Freeport. When she comes home from work on a Friday night, she does not leave the house again until Monday morning when she returns to work.
Dorla begins fixing her father’s nighttime medications and dinner. Thomas is up from his nap and stirring in the bedroom. Dorla takes him to the bathroom, even though her father is wearing a diaper. If she doesn’t, then Thomas will remove it and soil himself and his surroundings.
When they return to the kitchen, Dorla notices that she’s left a knife out and in one swift motion, grabs it and slides it into the drawer.
“Want something to drink?” she asks as she hands him a glass of apple juice.
“Thank you,” he says. He drinks the juice and puts the glass on the counter. She pours him more, but he’s on his way out of the kitchen. “I’ll see you, OK?” he says as he shuffles off.
She brings him back and gives him more apple juice. When he’s finished, he plants a kiss on her cheek. Some of the aides don’t like it when he does that to them, she says. “I tell them, it’s in our culture, lots of hugging and kissing,” she says of her father, who emigrated from Panama.
He faces Dorla, as if in serious conversation, but only mumbles incoherently, occasionally laughing to himself. He takes his daughter’s hand and rubs it affectionately between his callused fingers. Dorla looks down at his bare feet.
“Let’s put on your socks,” she says, leading him into his bedroom, which is empty except for a corner floor lamp and a hospital bed.
She watches as he slowly lowers himself onto the edge of the bed and tries to figure out what to do with the socks in his hand. Sometimes he puts two socks on one foot or puts them both in his pants. But he is adamant that he do it himself.
Giving up on the socks, Thomas takes a nearby shirt and swats it against the wall as if dusting. He was always extremely tidy, Dorla says. When he awakes in the middle of the night, thinking he’s about to go to work, he’ll often try to make his bed and clean his room. It usually just ends up being more work for Dorla.
Thomas stares again at the socks in his hand. After several minutes, he takes the open end of one sock and slides it onto his foot. He adjusts his flannel pajama shirt, rises from the bed and shuffles out into the hallway, wearing only one sock.
“Where are you going?” Dorla asks.
Thomas asks her in Spanish how she’s doing. His conversations can be in Spanish, English or a combination. The youngest of 11 kids, Thomas was born to Jamaican parents who came to Panama to find work on the canal. His native tongue is English, which he learned from the American soldiers in the Canal Zone. He learned Spanish from his children, and in turn taught them English.
“I’ll see you,” he says, turning away. He heads for Dorla’s bedroom, tries the knob and upon seeing that it’s locked, pushes his weight against the door, attempting to bust it open. Dorla moves quickly to lock the other bedroom door, just seconds ahead of Thomas, who then tries to get in. A standoff ensues for several minutes before Thomas relents.
“Ven,” he says, taking her hand, telling her to come with him in Spanish.
“OK, let’s go,” Dorla says with a smile, taking each hand as Thomas starts to dance with her, his legs bouncing and his feet moving back and forth in a salsa rhythm that his body has not forgotten.
He suddenly points to the front door and says “Vamos allí,” — “Let’s go there” — as he heads for the stairs. She tells him that he can’t go outside because it’s dark. He stops, and she’s able to lead him back into the dining room, where he begins circling the table.
“Daddy, I’m tired,” Dorla pleads as she follows behind him, making sure he doesn’t hurt himself.
Thomas goes into the living room, where he sits down on the glass end table. As Dorla tries to get him off it, Thomas tells her, “You’re not winning because you’re an idiot.”
Dorla laughs. “Where do you think you are, under a palm tree in Panama?” she says to him as he lazily leans back and crosses his legs.
Dorla’s teenage nephew, David, who is visiting, grabs his hand and Thomas laughs and allows himself to be pulled off the table. “He’s not sleepy at all,” Dorla worries.
Thomas has been walking around the house for longer than an hour now. Dorla theorizes that his meandering harks back to what he knows best: For more than 20 years he was a security guard, surveying the halls of a Brooklyn hospital.
They go back to the kitchen table, and Dorla hurries to prepare his Lean Cuisine dinner before he grows fussy. Suddenly, Thomas announces in Spanish that he wants to catch the bus, and he begins quickly heading for the stairs. Dorla’s nephew sprints to catch him and corrals him back to the kitchen, where he deftly pushes a chair underneath Thomas as he begins to sit down on empty space.
But Thomas is soon back up and Dorla follows him around the living room to feed him his dinner. He is determined to get to the stairs, so Dorla positions herself in front of him as she spoon-feeds him his glazed chicken with rice.
Thomas gives her a sly wink.
“You’d better stop flirting with your daughter,” she warns.
On and on this goes, him taking a spoonful of food, then walking away as Dorla chases after him. He says he doesn’t want any more but then eagerly takes another bite. Thomas takes out the sock from his pajama pants and uses it as a napkin.
As he tries yet again to make a break for the stairs, David blocks him. “What you want?” Thomas angrily demands. David just laughs at his grandfather’s feistiness, but keeps his distance in case he starts punching.
Dorla notices Thomas’ eyelids getting heavy, so she steers him into bed, his clothes still on. She’ll change him later. He’s sure to wake up around 1 or 2 a.m. anyway. Each night she has to get up to change him, his clothes and the bedding.
Last week, Dorla was changing him in the middle of the night when a confused and agitated Thomas caught her off guard and punched her face. “Now I’m very careful when I’m changing him in the dark,” she says. “Now I turn on the lights so he can recognize me.”
Not that he always understands she is his daughter, the oldest of seven siblings. Sometimes he thinks she’s one of his sisters or an old girlfriend. He doesn’t recognize his other four daughters at all, Dorla says, because they rarely visit. She says her siblings argue, “Why visit when he doesn’t recognize who we are?”
Dorla retreats to the kitchen. Now it’s time for her nighttime routine: a hot shower, some tea and then bed and hopefully some sleep. At least until her father calls for her again.
Lynn & Emma
“So now what do we do?”
Lynn grew up in Bayville, just a few blocks from where she lives now, after her parents moved her and her two brothers from Bellmore because her father, Fred, was working so much as a lithographer. If they couldn’t take vacations, at least his kids would get to go to the beach, he figured. Lynn adored their scenic neighborhood and their large Oak Point Drive Colonial with the grand staircase in the foyer and the swimming pool in the backyard.
Decades later, she can still recall how out of the darkness following a day excursion, she would hear the clang and hum of the metal grate as the family car rolled across the Bayville Bridge, a reassuring sign that they were close to home.
Emma was a vivacious and glamorous figure in their household — “like Elizabeth Montgomery,” Lynn says — always dressed to the nines and such an advocate of keeping up appearances that she became enamored with plastic surgery. She once refused to have an operation for a fractured leg over fear of a lasting scar.
Lynn remembers walking home from school each day to find a lunch prepared by her mom waiting for her. Sweet and caring yet stern and strong-willed, Emma pushed Lynn academically. She herself had dropped out of high school to marry Lynn’s father, a Korean War veteran. But she later earned her GED and tried to set an example for her children by going on to obtain a degree in English at Nassau Community College while in her 40s.
Dyslexic, Lynn struggled in school. Her mother would spend entire summers tutoring her so that she wouldn’t be left back. She credits her mother with motivating her long career as an X-ray technician.
Even as she entered her 30s, Lynn never had any desire to move away from her home and her parents. Everything in the house remained tranquil until 10 years ago, when Emma went into the hospital at age 68 to have a hysterectomy. Two days after the July surgery, Emma made comments about snow outside. Lynn wrote it off to the pain medications.
Emma began sleeping on the couch, something she would never have done in the past, and she had trouble remembering things. Then, the following year at Thanksgiving, Emma showed up at the dinner table in her pajamas.
“That was something my mother would never do, even if it was just her and my dad,” Lynn says. During a discussion of her upcoming birthday, Emma also seemed confused about her age. Now, the rest of the family was also concerned.
Lynn braced herself and initiated a painful conversation with her mother. “Mom, I think something’s going on,” she told her.
Emma agreed to see a neurologist. She had an EEG and a battery of other tests, all of which came back normal. “My mom was a little bit annoyed at that point and angry with me,” Lynn says. “She was like, ‘See, there’s nothing wrong with me!’” But Lynn sensed that her mother also knew something wasn’t right.
Things got worse. Lynn would find the TV remote control in the refrigerator. Keys were lost. Then one day, while a passenger in her mother’s car, Lynn watched in horror as her mother plowed through an intersection without stopping.
“Thank God no one was coming,” Lynn says. “So now we’re getting in dangerous situations. So now what do we do?”
Emma began having hallucinations. In the middle of the night she would come running into Lynn’s room yelling about raccoons that were trying to get in the house. Wanting to just block it all out, Lynn began to drink heavily as she struggled to adjust to seeing her mother transform into someone she no longer recognized. Then Lynn learned she was developing a stress-related ulcer.
Lynn took her mother to a geriatric doctor, and she received a diagnosis: Alzheimer’s. Next came the slow and difficult task of stripping away her mother’s privileges, such as driving.
“I have a car, I have rights!” her mother would scream. “You can’t take this away from me!” Lynn and her father would hide the car keys and distract her mother until she would forget wanting to go out.
At the time, Fred could still take Emma out to lunch or on a shopping excursion. They learned about Memory Lane, an adult day care program at the Long Island Alzheimer’s Foundation in Port Washington. Emma would go several days a week. After a few years, she became combative and had to be removed from the program.
For a time Lynn would dress her mother in pretty clothes and arranged to have a woman come to the house to do her hair. “Whatever it took to make her feel good in any way we could,” Lynn says.
Then they got rid of her beautiful outfits because she no longer needed them. The thick mane of auburn hair turned gray and was sheared down to a close-cropped hairdo.
“We slowly got rid of what made my mom my mom,” Lynn says. “Now she doesn’t know the difference between a pretty blouse and a flannel shirt.”
Lynn changed her work schedule so she could be home more for Emma and be her primary caregiver. Her two brothers, who do not live nearby, are not involved in their mother’s care. Her father, who is in his late 70s, has various health issues and can not care for Emma at the level she needs. Lynn and Fred also made the decision to move. Emma had begun wandering, and suddenly their two-story Colonial with the pool didn’t seem so safe. They moved blocks away to their current home and immediately began “Emma-proofing” the house, installing locks at the top of the doors that Emma couldn’t figure out.
During the move they discovered that Emma had been hoarding money. Hundreds in rolled-up bills were wrapped in tissues and stuffed into socks in the back of her closet. They found another $1,500 buried in a vase. Some of her jewelry still remains missing.
About that time Lynn began dating Heide Leuthner, 41, whom she had been friends with for more than a decade. Heide moved in and did not hesitate to take on co-caregiving duties.
“My motivation coming into this has always been my relationship with Lynn, so it felt like ... loving her was part of accepting her family situation and being there for her,” Heide says. “I could feel how much she loved her mom and still does.”
At first, Emma remained in the same bedroom as Fred. But her balance was deteriorating and Lynn was starting to think they’d have to make more changes. Then after spending a late night out at a Yankees game, Heide and Lynn slept in the following morning, thinking Fred was there to look after Emma. But he had already left the house. When Lynn woke up and checked on her mother, she found her walking around as usual, clutching a stuffed animal. When she looked closer, she noticed what seemed like a black veil of lace around her mother’s head. It was dried, congealed blood. Emma had fallen in the bathroom and cracked open the back of her head. The wound required eight staples.
For the next 10 days, Lynn slept on the floor next to her mother’s bed. Emma didn’t understand she shouldn’t scratch at her healing wound so Lynn had to monitor her constantly. She installed the closed-circuit cameras and began using restraints on her mother at night.
“There were some guilt issues with me, tying my mother down,” she says, sighing. “But I think for the well-being of all of us, it was a good decision.”
At the time of her fall, Emma was on 13 medications for health issues such as high blood pressure. The side effects, Lynn felt, were doing more harm than the medications were doing good. Emma could no longer keep her head up and she stopped eating solid food, losing 60 pounds. She ground her teeth until pieces of them broke off. She acted like a zombie. Lynn decided to take her mother off all medications.
“Because the bottom line, at this point, she’s not my mother anymore,” Lynn says. “Who cares if she has a little bit of high blood pressure and high cholesterol at this point? Why am I going to treat these things to prolong her life when she has no brain, when there’s no quality to her life left? But you know what, this is my job here, I’m taking over.”
Emma quickly improved, but another change soon reared its head. Two years ago Emma started constantly chattering. It’s a mix of humming, chanting and random statements. It’s a common Alzheimer’s trait: Touch is often the last sense to diminish and the vibrations off the lips are a pleasurable sensation.
Emma’s voice grows louder when others are talking around her so that she can be heard above the din. “Some days it’s like, ‘Please, just shut up,’” Lynn says. “I’m changing her diaper and she’s yelling in my ear.”
Dorla & Thomas
“Punishing him for his illness”
Dorla grew up under the shadow of her father’s fist. Thomas was a strict disciplinarian who pushed his seven children to embrace the values he held dear: respect for elders, proper etiquette and education. Dorla’s childhood was particularly difficult.
“Me being the oldest ... I had to take care of everyone and get them dressed and make sure their homework was done and help my mom, and of course I got the brunt of whatever they did,” she says.
Her father ruled by the belt. “If you don’t listen, you’ll feel,” he would bellow.
Tall and lean, Thomas believed in dressing well, to exude a sense of style and sophistication. He also believed in hard work and providing for one’s family. After coming to the United States from Panama, he worked in the hotel industry, eventually becoming the assistant director of security for the Sheraton Hotel in Manhattan. After 20 years he became a security guard at a Brooklyn hospital, a job he held for another 20 years. After his retirement at 72, he sank into depression, Dorla says, and began drinking heavily.
Dorla’s mother, she says, grew tired of Thomas’ womanizing and left him in 1971 and moved to Savannah, Ga. Many of his children also gave up on him. A longtime “functioning” alcoholic who lived alone in Brooklyn, Thomas remained regularly in touch with Dorla and her brother Cory, who did not pick up on their father’s Alzheimer’s right away.
It began with his misplacing things: a wallet, a checkbook, insurance cards. He accused his children of stealing from him. In time, the items would show up in odd locations where he had hidden them. At first, the children thought all of the booze was finally catching up with him.
Then he fell and ended up in the hospital. When Dorla and Cory came to see him, they saw that he had bruises all over his body. “We started to think it wasn’t just the alcohol,” Dorla says. “Something else was going on.”
Doctors ran mental acuity tests. Asked to perform simple tasks — drawing a clock and remembering three words — Thomas floundered. For a while, he lived alone in his apartment. The siblings took turns checking in on him. But he began forgetting to turn off the faucets and the stove, and neighbors complained. Money disappeared. Dorla and her brother suspect their father either gave away money or was hoodwinked by drinking buddies or girlfriends. There’s still thousands missing.
Cory and Dorla began taking turns spending nights at Thomas’ apartment, Cory coming from Queens, Dorla from Freeport. That worked for only so long and they began hiring aides, spending $250-$300 per week. They tried going the official route through an agency, but the red tape with Medicaid — they were told their father was ineligible because his pension and Social Security were nearly $1,200 a month — made it so difficult that they located aides on their own, through recommendations from friends.
Cory, a father of four, found himself dipping into his own family budget to help pay for his father’s care. Then he moved to Ohio to be a pastor of a church.
Dorla was able to enroll Thomas into an adult day care program. He would make everyone laugh and loved to get a good game of dominoes or pool going with the other participants. Then he suffered a bad fall and it seemed his Alzheimer’s accelerated.
Doctors put Thomas on an Alzheimer’s drug, but his condition only seemed to worsen. Meanwhile he had become such a danger his apartment building manager asked Dorla to remove him. In August 2003 Cory suggested they place him in a home. Dorla resisted. Her father had always told them to never leave him or let him die in a nursing home.
“Our culture is Grandma, Grandpa, Daddy and Mom stay with you until they die,” Dorla says. “We were torn up because in our culture they stay with us. We don’t do nursing homes.”
But the siblings felt they had no other option. Dorla would visit the Brooklyn nursing home regularly and began to notice some problems. She learned that her father had wandered out to the street one day. Another time she found him filthy with feces on his body and clothes. She began paying a home worker out of pocket to ensure that her father was regularly showered.
“He was a man with vanity,” she says. “It’s not acceptable.”
Dorla began visiting him every other day and on weekends. She found her father lethargic and rapidly losing weight. Thomas would tell her the staff was hitting him, but when she would ask them they would dismiss his statements, saying, “Oh, he has Alzheimer’s, you can’t listen to him.”
Dorla and Cory took their father out of the nursing home in April 2007, and he was admitted to a hospital.
They tried to place him at another nursing home, but each time, his stay did not last 30 days, the period after which a bed is guaranteed. Sometimes he did not make it for more than a day. The reasons always given were his aggression and agitation.
At one home Dorla made a surprise visit. Her father was facedown in his dinner plate, and she was told he was no longer walking on his own. She was worried he was being overmedicated.
A nurse told her she had 56 patients and “no time to cater to your father.” He was soon dismissed from that home. Over three years Thomas was a resident of six homes and was denied or turned away from another 32.
“They’re taking him, saying they are an Alzheimer’s-secure facility, and then they send him back because he’s wandering?” Cory says. “Because on his chart it says he’s combative? That’s Alzheimer’s.”
The siblings feel their father is now blacklisted among nursing homes. “In a way, they are really punishing him for his illness,” Cory says.
Dorla moved to a Baldwin house better suited to her father’s needs and through Visiting Nurse Services has an aide for 10 hours a day, five days a week. But she struggles to balance her full-time work schedule with her father’s care. And Cory is worried about his sister’s health.
“Two sick people can’t take care of each other,” he says.
Lynn & Emma
Morning, December 2007
It is 6:30 a.m. and Lynn hurries around the house getting ready for work. Christmas is a couple of weeks away, and tucked into a far corner of the kitchen is an elaborately decorated tree, placed where Emma won’t knock it over.
In the room just off their kitchen, they have set up a bar, a pool table, jukebox and dartboard. These past few years, entertaining at home has become a necessity. Gone are the days of spontaneously grabbing a beer with colleagues after work or taking up a last-minute dinner invitation with friends. Planning is everything now.
Lynn has created a “Memory Wall” in the room, covered with an assortment of mementos, including her Girl Scout badges, awards for her mother’s prizewinning orchids and her father’s Korean War honors. Dotting all of the keepsakes are dozens of photos, including one of Lynn wearing a dress and hat Emma made for her.
The memory wall betrays Lynn’s resilient front, revealing a sentimental side she struggles to reconcile with the fortitude needed for the day-to-day care of a deteriorating mother. “I mourned her loss years ago as far as the mother I knew,” Lynn says. “But I’m sure it will still be devastating when she passes.”
At night, she whispers to her mother that if she wants to go, it’s all right. After nearly a decade of caring for her mother, Lynn wonders how much longer and further the journey of her mother’s decline will be. In moments of despair, she wonders why God has not yet taken her.
“What makes it hard is that it’s all — the — time,” Lynn says, her words weak and drawn out. “It just doesn’t stop.”
Lynn was 36 years old when her mother first began showing signs of the disease, which means a prime chunk of her adult life has been devoted to being caregiver for a woman she’s only half sure recognizes her.
“I still see eye contact and she’ll smile,” Lynn says. “They say the heart remembers, and I believe that.”
Lynn’s father has gone out to breakfast with his buddies, a decades-long ritual that Lynn has encouraged him to maintain. After a few minutes Lynn walks into her mother’s room. “Ready Emma?” Lynn gently inquires as she approaches her mother.
“Nah,” Emma answers from under the covers.
When Heide awakes she walks into Emma’s room. She takes the restraining strap off and asks, “Are you still sleeping?” From under the covers comes Emma’s response, a firm, slightly annoyed, “Yes!”
“Come on, get up,” Lynn prods her mother gently. Heide takes her by the hand and leads her to the bathroom. She pulls down Emma’s pants and rubber underwear and sits her on the toilet.
“What color should we put her in today ... ” Lynn wonders out loud as she sorts through Emma’s clothes, which sit in neatly arranged piles on top of the bathroom counter. Lynn tells Heide she can go get ready for work while she brushes Emma’s teeth.
When she finishes dressing her, Lynn inspects Emma’s skin, rubs ChapStick on her lips and searches her pupils to make sure there is eye contact. She brings her mother into the kitchen and sits her down at the table. Lynn hands Emma two waffles slathered with peanut butter. “Yes, thank you,” Emma says as she bites into her food. She continues to make humming and chanting noises as she chews:
“Chatta batta, chatta batta, coulda dada, coulda dada, he’s gonna be, shada batta, ada curt curt, ada curt, dada dada atta, shera dada, no because, no, isa isa da bidda, churabat, churabata, churabata, hada bada, hada bada,” Emma says, over and over.
When she finishes eating, Lynn hands her a glass of a chocolate vitamin shake, which she gulps down.
Their morning dance continues with Heide taking Lynn’s place at the table while Lynn gets ready for work. After a few minutes, Lynn comes back to give Heide a kiss goodbye. Heide gets up and Emma rises, too. Heide tries to sit her down again but Emma won’t stay still, so Heide hands her a Cookie Monster doll and the two take a lap around her room. When they get to the large mirror that hangs by the door, Emma stops and is taken by her own reflection. She stands there, mumbling words and blowing kisses to herself.
Heide struggles with being a co-caregiver. “I’ve definitely had to sacrifice my freedom and spontaneity,” she says. “And I like to dance and hang out with my friends, sometimes late at night, and that doesn’t happen. There are times when we’ll have little debates, and I’ll say, ‘We can do it, let’s go out this weekend.’ Well, who’s going to be with Mom? ‘Well, we can hire someone.’ ... And there’s this banter where we go back and forth and she’s throwing out the rational and I’m throwing out the irrational and I’m saying, ‘Come on, let’s go out.’”
After a time, Heide finds Emma lying down on the couch in the fetal position. She helps her up and tells her to do some laps around the room while she gets dressed for work.
At first Emma referred to Heide as “the stranger” and would bristle at receiving care from her. Sometimes, she would physically attack her. One time Heide turned her back on Emma and she cracked her over the head with a glass candleholder. Heide says she was able to handle the aggression, which eventually subsided. More difficult to witness for her is the emotional toll Alzheimer’s has inflicted on Lynn.
“It’s hard to watch somebody you love being, in her own way, eaten away by this disease because she has to watch her mother slowly die,” Heide says. “There are times when it hits her really hard, and she’ll cry and she’ll ask, ‘Why’s God doing this?’”
When Lynn feels beaten down by the disease, Heide is able to step in and take on the brunt of the caregiving. She says that, given all she has, caring for Emma isn’t that difficult.
“I always look around me at night and I say, ‘I have a beautiful home, I have a wonderful life, I’m blessed,’” she says. “And if the small part of payment back to the woman who is the reason why we’re in this house is to change her diaper and be sweet to her, then that’s a small payment for happiness.”
In a few minutes, Fred walks through the front door and Heide leaves for work. Now retired, Fred now spends most of his time hanging out with his fishing buddies. He feeds his wife lunch four days a week and changes her diaper if necessary, although he avoids that duty as much as possible. And he has a hard time watching his wife eat, often turning his back and walking away from the kitchen table as she wildly shovels pureed food into her mouth, the excess oozing out between her lips and falling down onto her chin. She had always been such a lady.
Despite the struggle at times, Lynn doesn’t push him to do more. At 79, he has numerous health issues, including a bad back and emphysema. “It’s the end of his life, so I want to give him some quality of life, too,” she says.
When his wife dies, he says, “We’d be sad, but it would be better. She’s only existing now.”
Dorla & Thomas
Night, December 2007
Dorla comes home from her job as a prenatal care coordinator at a Nassau County hospital to discover that Thomas has punched home health aide Juliet in the face while she was trying to change him. Her glasses cracked and flew off her face.
“She’s the best we’ve had. I pray she’s not going to leave,” Dorla sighs. Juliet is the eighth aide Thomas has had since he came to live with Dorla last month.
Dorla’s body aches. “This is really taking a toll on me now,” she says. She may have to pay someone to be there at night. Nights and weekends often cost more, around $20 to $25 an hour. “But even if I bring in a live-in, it can’t be seven days a week,” she wonders aloud. “He’s really a handful” for the aides.
It’s medication time. She crushes the pills into applesauce and tries spooning it to him. He wants to keep moving. “Come on, sit,” she implores.
He sits down at the table beside Dorla, his hands folded in front of him, staring at her. “Daddy, did you hit Juliet?” Dorla asks.
Thomas chuckles and shows her his hand. Dorla wonders if he hurt himself during the incident.
“You can’t be hitting her, that’s not nice,” she reprimands him. “She’s going to leave you.” Thomas laughs. “It’s not funny,” she says.
Dorla asks her father where he was today. “I was at work,” he replies. “It’s time for you to talk.”
Dorla smiles. “What do you want me to talk about?”
“I’m waiting until I grow up,” he says, and Dorla erupts in laughter. She begins clipping his fingernails.
“I don’t want you scratching Juliet,” she says.
Dorla sees his eyelids start to droop. She worries he may want to go back to sleep too soon, and that means waking up early tomorrow. “Please don’t sleep now,” she pleads.
Dorla telephones Juliet, asking how she is and if her glasses need to be repaired. “OK, get it fixed and let me know how much it is,” she says. “I’m so sorry.”
She gets off the phone, and it’s now time to get the arroz con pollo ready. Thomas is trying to get up from the table. “No Daddy, sit, sit, it’s time to eat,” Dorla says.
When dinner is finished, Dorla guides Thomas into the bathroom.
“Come on, brush your teeth,” she says.
Thomas resists, slapping her hand away as she tries to give him a toothbrush. “Daddy, come on, you’ve done it before.” She wraps his hand around the handle, which hangs out of the corner of his mouth. He slowly starts moving the toothbrush. “There ya go!” Dorla says excitedly.
When he is done, Thomas tries to urinate in the sink. “Come on, Daddy, you’ve got to do this in the toilet,” she yells at him.
By 8 p.m. he is in bed and Dorla retreats to the kitchen. But then, from down the hall, she can hear her father talking and moving around the room.
“Go to sleep Daddy, go to sleep,” Dorla whispers. She pulls up another chair, props up her feet, drops her head back against the wall and closes her eyes.
Lynn & Emma
Lynn and Heide have planted a huge garden outside their house that would later overflow with eggplant, tomatoes, peppers, cucumbers and corn. Lynn uses her day off on Wednesday — a schedule she developed with her dad to best work around Emma’s care — to tend to the garden.
But this Wednesday, Lynn is inside the house, meeting with a hospice worker who has come by to evaluate Emma. The worker, Kathy Villani, sits across from Lynn and her father at the kitchen table and explains the program’s guidelines.
“You guys are doing a wonderful job with her,” she tells them. “Do you feel you’ve seen a drastic decline in the last month?”
“Yes,” Lynn says. “She doesn’t get up on her own anymore. Her balance is a lot worse. There’s less concentration. It’s difficult to get eye contact. She’s started walking aimlessly into corners and getting trapped there. It’s harder to get her to drink.”
Villani asks if they would like a home health aide, and Lynn admits it would be nice to have someone come in the afternoons to help change her mother. Her father shouldn’t have to do it, she says, adding: “This is his wife of 60 years.”
Villani says she will try to get someone but admits “Bayville is a little tough” due to the lack of public transportation nearby. She goes to examine Emma. As she approaches her, Emma spits out, “You, you jerk!”
“Can you open your mouth for me?” she asks Emma. Emma complies and sticks her tongue out for Villani, but as she tries to shine a light down her throat, Emma attempts to bite down on the flashlight.
Villani takes out a stethoscope and listens to Emma’s lungs before announcing that she will next listen to her belly. “No you won’t,” Emma responds before resuming her gibberish.
“She looks great,” Villani says. Emma walks over to the mirror and begins talking to her image.
“I gotcha, I gotcha,” she beams into the mirror, kissing her own reflection.
Villani tells Lynn she thinks Emma will qualify for hospice services, which are available for those nearing the end of their lives. After she leaves, Lynn lets out a sigh and looks at her father. “That was like 10 pounds off my shoulders,” she says.
“I think she’s closer to the end than the beginning,” Lynn says. “You see her today and she’s going to live another five years. But you see her the way she was the other day and ... I don’t know.”
Seeing Emma’s rapid deterioration these past few weeks has forced Lynn and Heide to rethink their plans. The couple has booked a trip to Mexico for May. “Her getting worse was such a knot in my stomach,” Lynn says. “But we booked this vacation a year and a half ago — we’ll lose 75 percent of our money if we cancel.”
Needing the break, they will still try to go, leaving Emma in the care of a friend who has stayed with her before. “I’ve had bouts of guilt over leaving her all the time, but I just can’t be there 24 hours a day,” Lynn says. “No one can.”
Dorla & Thomas
In January, Dorla receives a notice from the Nassau County Department of Social Services. Its assessment of Thomas is that he is “inappropriate for Personal Care Services” — the county’s Medicaid program that provides help at home. Personal Services is not supposed to do anything but give meals and a bath, Dorla says she was told. They suggest she put him in an assisted living facility.
“He needs one-on-one, 24/7 care,” Dorla says, exasperated. “Assisted living is not a suitable place for him.”
Just weeks later, Visiting Nurse Services sends Dorla a letter saying that she no longer meets the criteria as set by Medi-caid. Thomas will be discharged from their care in a matter of weeks. “We are not required to continue to provide you with services where there is no clinical need for such services,” the letter read.
After a phone call, Dorla is assured Visiting Nurse Services won’t pull Juliet out until there is someone else in place. Although she has power of attorney and her father signed a health care proxy, Dorla continues to wade through red tape, resistant administrators and unhelpful suggestions as to how to care for her father. A social worker at Visiting Nurse Services suggested she enroll her father in an adult day care program. But Dorla says that at this stage he can’t be bound to a program or schedule. Trying to force him will only bring out the fighter.
“I’m not about to put him in a day program and then they’re calling me at work every time something happens,” Dorla says. “I can’t talk on the phone, I always have to be watching him. It’s really like raising a kid. ‘Once a man, twice a child,’ that’s what my father used to say.”
Lynn & Emma
It’s early morning and Emma has been awake for a half-hour. She’s sitting on the toilet, Lynn across from her, resting on the edge of the bathtub, trying to clean her mother’s fingernails.
“Something about dirty nails,” Lynn says. “Something about when we were growing up. You can’t have dirty nails.”
Nails are just one of the many details Lynn frets over constantly. Is her mother hot? Does she need socks? Is her skin dry? Should I soak her feet? It’s a relentless guessing game that mixes worry with a desperate attempt to appease a previous, healthy version of her mother. She feels her mom has recently been slipping. She’s having trouble holding a glass lately and has difficulty swallowing.
Lynn sits Emma on the sofa next to a stuffed bear while she gets her breakfast ready. She peels a banana and hands it to her mother, who sits with her knees pushed up to her chest, chewing slowly as she stares blankly at the morning news programs on the television.
Lynn stands nearby watching. “I have to keep an eye on her now,” she says. “I used to be able to give her a sandwich and leave her alone. Not so much anymore.”
Emma has to be fed her dinner now rather than eat it herself. She doesn’t get out of bed on her own anymore, and the laps around the room have stopped. Lynn plans to put the china cabinet back up. At night Lynn stares at her mother on the monitor on her desk and wonders what’s next.
Emma sits with one leg casually crossed over the other, chewing on her waffles. Lynn gets a plastic cup of a vitamin shake and sits down on the couch beside her. Emma still chews her waffle. “You’re so slow,” Lynn says with a smile. “You always were a slow eater.”
Lynn and Heide have canceled their timeshare vacation this winter. Their annual trip to Key West always has been a relished break from their caregiving routine. The couple fought over it. Heide, desperate for the mental escape, is still trying to figure out a way for them to go.
Other plans remain in limbo. Heide wants to go to back to college and teach sign language. She talks about adopting mentally challenged kids. Lynn’s not so sure. After her mom dies, she’d like to savor freedom again. Caring for her mother has humbled Lynn and taught her patience. But that patience has become frayed.
Emma suddenly jerks, her hand reaching out to Lynn, who grabs it as Emma starts whistling, a recent addition to her humming and chanting.
“Watching someone who was so intelligent, so vibrant, so full of life and so beautiful over the course of all these years turn into 87 pounds sitting in a diaper in the fetal position on the couch whistling...” Lynn says. “If she had her way right now, she wouldn’t want to be like this.”
Dorla & Thomas
Juliet is gone. Visiting Nurse Services pulled her out in September, and Dorla is now using another health care provider, paying $700 a month from her dad’s Social Security check. She has not had an aide last more than a week for the past month and a half. Thomas is just getting more and more confused by the parade of faces.
Today she received frantic calls at work from the new aide because Thomas locked himself in the bedroom and the aide couldn’t find the key. Dorla had to take a taxi from her job because the aide was about to call 911.
This week she also found out his former nursing home in Brooklyn has put a hold on her bank account and now she can’t pay her rent. They are claiming Thomas lived at the home until July, even though, Dorla says, he was taken out in April. The home says she owes them more than $30,000.
Dorla gets Thomas from his room. He stands in the kitchen and looks at the front door. Dorla knows what comes next. “You know you can’t go to the stairs, right?”
“Huh? OK,” he replies.
Thomas has started hallucinating more. “Get them,” he says, pointing to an empty hall. He’ll see dogs outside the window and thinks they are the goats and horses from the farm he used to have back in Panama.
He’s also begun having “silent” seizures, which Dorla didn’t realize at first. Thomas would simply sit and close his eyes and breathe heavily for several minutes. But when he did this for 15 minutes last week, she called 911. He ended up in the hospital for four days, heavily medicated.
Thomas takes his balled-up fist and play fights with Dorla, a smile splashed on his face, as his daughter lightheartedly joins in. He suddenly stops and gently runs his hands up and down her arm.
“I’m Dorla, I’m your daughter!” she shouts at him. “Off limits!”
He’s likely to be up for a while, exhausting his already worn-out daughter. He’s no longer napping during the day, the previous routine he established with Juliet, who is now gone. He still calls out to Dorla repeatedly during the night.
Her siblings and mother have been telling her she should move down to Georgia and place Thomas in a home there. Other family members, like her 36-year-old son, have wondered why she is even bothering to care for a man who treated her so cruelly growing up.
All she can say is that she has forgiven him.
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