Love, long bus rides and Alzheimer's
It's lunchtime and David Richmond wants to feed himself.
A tray of pureed food is brought in to his room at John J. Foley Skilled Nursing Facility. His wife, Gloria, is there to help him eat but tries to let him do as much as he can by himself. David is so anxious to feed himself that he sticks his gloved hand into the mashed potatoes and gravy.
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Gloria removes the gloves from his hands and gives him a plastic spoon. David enthusiastically overloads the utensil with food and shoves it into his mouth, the excess falling out around his lips, then down to the blue paper bib he wears around his neck.
Gloria wipes up the food, then limits the amount David excitedly piles onto his next spoonful. "Sad . . . " Gloria says, shaking her head. "He was so meticulous when he used to sit at the table to eat."
Gloria travels to the nursing facility at least four times a week to help feed and care for her husband. Each time she visits she stays for eight hours. She would like to come more often, but she doesn't drive and the bus she relies on to take her to the Yaphank facility from her condo in Holbrook doesn't run on Sundays and holidays.
Even with the hardship of taking the bus those four days, she concedes, she sometimes needs a day off out of sheer exhaustion from caring for a man lost in Alzheimer's disease.
"I love my David," she says as she feeds him thickened milk from a cup. "He's my everything. He was a good man."
When she turns her back on him, David sticks his index finger into the cup and she wipes his hand with a paper napkin.
"Do you like it?" she asks him as she feeds him his dessert.
He doesn't answer the question. David has not spoken in three years. He makes sounds and sometimes offers her a word. He said "yeah" the other day, Gloria notes with excitement. She continues to talk to him, hoping from a place deep in her heart that he hears her and understands.
David, 70, lives on the Suffolk County-owned nursing home's dementia unit, a gated floor with 80 beds. David's room, which he shares with another resident, is sparsely decorated: some photos taped to the wall; a certificate of recognition from the U.S. Navy for honorable service; a Bible quote, "But they that wait upon the Lord shall renew their strength."
At first, Gloria, 69, was so depressed about David being here that she couldn't bring herself to decorate the bare white walls. But after four years, she has started to put out some pictures and a few trinkets. Even those stark reminders of a pre-disease David can upset her on some days.
Lunch over, Gloria hands David a coloring book and a crayon from the heavy flannel bag that she lugs with her each time she visits. The bag is full of puzzles and other activities to help keep David busy.
As her husband begins coloring, Gloria takes a wooden massager from her bag and runs it across his back. David doesn't qualify for massage therapy and this is good for the lungs, she says. Three years ago, she was the one who first picked up on David's pneumonia, she says proudly.
Outside his room, romantic ballads play over the facility's speakers. David used to like listening to country-western music, Gloria says. There were so many things that she never paid enough attention to when her husband was well, she says wistfully. "When I first met him, he had stuffed animals in the back of his car," Gloria says with a smile. Now David clutches a stuffed white bear like a child clinging to a security blanket. "It's good that he's still able to do that."
The couple met 25 years ago at a divorced Catholics meeting in Queens, where they both lived. She remembers it seeming like a high school dance, with men and women on opposite sides of the room, everybody nervous to approach one another. David and a friend began talking to Gloria and her friend and the group immediately clicked. David taught Gloria how to Lindy that night.
When he found out Gloria worked near his job site, David asked for her phone number and said maybe they could have lunch together. Lunches were followed by dinners and more dances. David was a fun, affable guy who liked watching Giants football and smoking a good cigar. He went fishing and hunting and was active in the Knights of Columbus.
Most importantly to Gloria, he was a gentleman. She was impressed with his manners and the way he pulled out the chair for her daughter when she introduced them. She figured they would date for a while, have some fun. She never thought she'd get married again. A year later, he proposed, asking Gloria's mother for her daughter's hand during an outing in Montauk.
For their 24th anniversary last year, Gloria was thinking about taking David out to Montauk once again. But transporting him there would be difficult and she would need an aide to come with her, should David need to be changed. Deciding it would be too costly and troublesome, she has given up on the idea.
After lunch, she takes her husband for a "walk", wheeling him down the hallway to an alcove with seats facing a large picture-window and a television perched near the ceiling. Gloria points to the screen where an 1980s action movie plays.
"See the television, David?" Gloria asks. David looks up at the television, his eyes drawn to the constant flicker of images flashing in front of him. But his attention quickly goes back to the coloring book that Gloria then takes away. "I love you," she says to him, trying to look into his eyes. But David's gaze is on the hallway and the movement of the nurses.
"I miss you," Gloria says, her arm around his neck, gently rubbing his shoulders. David does not respond. Tears begin to fall down Gloria's cheeks.
She hands David another coloring book, placing a crayon between his fingers, closing the tips around it and pressing his hand to the page. His arm trembles as she helps him guide the crayon. She soon gives up and takes the crayon away, handing David a yellow shoelace and a blue cardboard butterfly with holes around its perimeter. He can practice his sewing, she says, a smile returning to her face. He used to be very good at the task. Now he just scratches at the cardboard with his right index finger, the same spot, over and over.
One of the side effects of David's medications has been obsessive compulsive behavior, which has taken the form of an unrelenting desire to scratch. If left alone, he will tear the flesh off of his finger and any other body part he can reach. He now wears gloves to minimize the damage but he continues making the motion, scratching at anything put in front of him.
Gloria tries to keep his hands busy, but even when she gives him a toy or some other distraction, he inevitably just begins scratching that object.
"Look David!" Gloria says, holding up a green rubber ball and squeezing it emphatically in front of him. David's eyes are focused elsewhere, staring down the hall even as he continues to scratch at the cardboard butterfly.
"I'm running out of ideas," she says with a sigh.
None of David's family members come visit or take part in his care, she says. She is David's primary caregiver. "It's a long day," she admits wearily. "People ask me how do I do it but it doesn't bother me . . . I'm sure he would have done the same if it were me."
She's able to do one-on-one activities with David, she says, something a nursing home does not have the resources to do. Moreover, she provides the voice he no longer possesses.
"I'm his advocate," she says. "He can't speak for himself."
When not tending to David, she sometimes ends up helping out other residents as well. She feels bad for them, she says. Some never get visitors.
In addition to her regular visits, she tries to make surprise appearances, to make sure David is being cared for the way she wants. She's made numerous requests for changes in his care, such as the time she arrived to find him in a T-shirt even though it was winter. She asked that he be put in a sweatshirt and the nursing home obliged, she says.
"It's important for me to be here," she says. "They're short-handed with staff . . . and you can't expect strangers to help."
Still, Gloria worries about getting on the bad side of staff and becoming known as a troublemaker. She fears too many complaints may lead workers to retaliate through the quality of David's care.
It's a tightrope she must constantly walk, trying to decide when it's time to speak up and when it's best to hold back. The workers here do a great job, she says in a low voice, "but all I need to do is say something negative and then we'll be out. This is his home."
For more than 30 years, David worked as a locksmith, first for New York Telephone and then Verizon. Gloria worked for the Elmhurst Hospital Center doing patient accounts and billing for 27 years. As they entered their senior years, both talked about retiring and the days ahead they would spend traveling together.
But David began having trouble at work. A co-worker who drove with him told Gloria that David was running red lights. Neighbors started telling her that he would pass them without saying hello.
"He was always very polite and outgoing," she says, but he seemed to retreat into a shell, remaining quiet during outings with friends. Gloria would ask him why he was not conversing more and he would simply reply, "I have nothing to say."
He often had a blank look on his face when greeted by Gloria's co-workers. At first, she was annoyed with his behavior. "How could you not remember that person, you just met them two days ago," she would scold him.
"Well, apparently they're not that important," he would respond.
He didn't recognize friends and relatives who would call. Then one time he didn't recognize Gloria's voice. She thought his hearing was going. Then she read an article about the warning signs of Alzheimer's. David had every one.
She convinced him to see a doctor, but since he was still in his early 50s, the doctor ruled out Alzheimer's. Gloria pressed on and had a neurologist evaluate him. David passed the tests and the neurologist didn't suggest any further testing.
Gloria knew little about Alzheimer's at the time. She is now a veritable expert on the disease. She never passes up an opportunity to load up on pamphlets and literature in Spanish which she sends to friends and relatives in Puerto Rico.
People need to know about this disease, she says. Sometimes, she feels like she's absorbed a little too much for comfort. "Knowing so much about the disease, you start thinking, 'Am I going to be the next one to get it?' "
David squeezes the shoelace through the hole of his cardboard butterfly. "Very good David," Gloria tells her husband in the reassuring voice of a grammar school teacher.
A tear crawls out of the corner of David's eye. "That's what really breaks my heart," Gloria says. "I think he knows." She tells him not to cry but her own tears start to flow. "We're taking good care of you here," she says, her voice breaking. "I wish I could take you home. I love you. I wish you could tell me what you feel."
She is bent over his wheelchair, searching desperately into his eyes but David doesn't look back, his gaze focused instead on the swaying trees outside the window.
By 8:30 a.m. in her Holbrook condo, Gloria's lunch is made. She packs the ham and cheese sandwich into a bag and sets it aside. Then she pours coffee into a large thermos.
By 9 a.m., she is a blur, rushing around her condo, working furiously to vacuum the rug and do a little housecleaning before she leaves for the day. When she gets home at night, she's just too tired to do any housework.
"And I can't afford to hire someone to come in and help me," she says. "Everything goes toward care for David and my mortgage and all the other expenses."
Her home is consumed with clutter. Papers and scribbled notes rest in teetering piles on and around the dining room table. On the cabinet next to the table are pictures of her and David: a small wedding picture with her sitting in David's lap squats next to an 8-by10-inch photo of her standing behind an expressionless David in his wheelchair on a recent Memorial Day, a tiny American flag clasped in his hand.
The table is swathed in a fancy red and green cloth. She has a Christmas tree, a skinny foot-tall frosted fir that sits on an end table in the living room with a small Nativity scene nearby. As she cleans, Gloria places a poinsettia on a table in the living room.
"I try to fix the place up and make it nice, to make me feel better," she says.
An Islip town bus takes her to her appointments. For her visits to see David, she uses the Suffolk County Accessible Transportation bus, which she reserves a week in advance. Her wall calendar in the kitchen is a blur of ink markings, all of her scheduled bus times scrawled into the tiny boxes for each day.
The bus costs $6 for a round trip to the nursing home. It's cheaper than a cab, which would cost her at least $50 per round trip, and far easier than the three public buses she would have to use to get to Yaphank.
Sometimes the bus is late and on at least one occasion, she waited more than a half-hour in the cold. By the time it came, she couldn't feel her fingers. Still, the next morning she was right back out in the cold.
"It's important for me to be there now, while he's still aware," she says, an urgency lining her voice.
Her white Maltese, Nina, dressed in a Christmas sweater, scampers around Gloria's feet. She's her companion now, she says. Nina barks and jumps at her knees.
"She needs so much attention and I love it," Gloria says, beaming. "It's good therapy for myself." She makes sure to leave newspaper pages spread out on the kitchen floor for the dog, since she is gone so long during her nursing home visits.
She wants to take Nina to visit David, once the dog's shots are updated and the nursing home gives approval. She hopes he will remember her.
When she's ready to head out the door, she puts on a vest, scarf, hat, gloves and an insulated coat with hood. Walking to the corner to wait for the bus, her body lists to one side from the weight of the two bags she carries with her, which are filled with her own supplies for the day, along with toys and activities for David. When the weather is particularly treacherous, she uses a cane to support herself on the ice and snow. Her bad hip has a tendency to stiffen up on her.
When Gloria arrives at the nursing home and goes to David's floor, she passes by the common area, which serves as both cafeteria and activity room. It it almost lunch time and the room slowly fills with residents, some with their heads resting on tables, others with their heads back, mouths agape. Some simply stare off into space.
"How's my honey?" Gloria says as she enters David's room. She tugs down on the bottom of his gray sweatshirt and brushes her hand across the shoulders, dusting off the lint. On David's hands is a pair of gardening gloves that prevent him from clawing at his skin, his name typed onto an orange sticker along the pinkies. Personal items have a way of disappearing in nursing homes, Gloria says in a whisper.
From one of her bags, she takes out a green camouflage hat, one that reminds her of a past favorite of David's. "I bought you a new hat, David," Gloria announces as she hands it to him. David looks down at the hat and begins scratching at the rim with his index finger, his tongue slowly and continually darting in and out of his mouth, a side effect of the disease. Off in the distance, a resident emits a loud moan.
She slides the hat over his white hair as he stares down at the floor. Gloria holds up a mirror. "Look how handsome you are!" She gives him the mirror and he holds it unsteadily between his fingertips.
"Yes, that's you!" she says as he gazes vacantly at his reflection.
She dips a hand into the red flannel bag of activities strapped to the back of David's wheelchair. She pulls out the cardboard butterfly and shoelace, placing it in David's hand and demonstrating again how to make a stitch.
David soon has a steady rhythm going, moving the shoelace through the holes and around the perimeter of the butterfly. Gloria watches him and begins crying, her mascara streaking beneath her eyelids as she buries her head into the crook of her arm and quietly sobs. David continues to sew.
After a few minutes, Gloria checks the time. Lunch is coming soon. She takes out a stack of coloring books and a plastic container full of crayons while "It's the Most Wonderful Time of the Year" plays over the facility's speakers. Gloria rips out one of the pages and places it in front of David.
"That looks like a bee to me," she says, handing him a yellow crayon. David begins coloring rapidly over and over in the same spot - as if he was scratching - ignoring the rest of the picture.
She ties a bib around his neck and turns to face him. "Do you know who I am? Huh?"
David stares down at the bee and continues to color, his tongue methodically sliding in and out of his mouth.
"Why don't you try the face or the other ear?" she says to him. She grabs a yellow crayon and points repeatedly to the bee's face to try to convince him to change his coloring spot, but David remains resolute on the ear.
She collapses into a chair, letting out a long sigh. "I'll Be Home For Christmas" plays over the speakers. "It's a terrible, terrible loss for me," she says looking at her husband. "We were very much in love . . . and so young."
After doctors dismissed her concerns that David had Alzheimer's, Gloria was undeterred. She enrolled him in a clinical study on memory at Mount Sinai Hospital. She said the study helped delay the disease through vitamins and the Alzheimer's drug Aricept. But it was only a Band-Aid. After three years, the therapy wasn't working anymore, and David developed severe stomach problems from the drug.
David took a buyout from his company and his behavior became worse. He was a whiz at math, so he was the one who handled all of the couple's finances. But he was having trouble writing checks and he began sending payments out twice, or not at all, leaving their bank account a mess and threatening their credit. He struggled to find words and began stuttering. His hearing and sense of smell began diminishing.
Gloria decided to retire. She had wanted to keep working but became afraid to leave David alone in their apartment all day. He was still able to travel, a favorite interest for both of them, so they took as many trips as they could once Gloria stopped working.
"I knew this disease would eventually progress, and he wouldn't come back to me," she says.
Their last trip was a cruise to Nova Scotia. "He was confused on it," she says. "He couldn't open the lock on his suitcase, and he was a locksmith."
Gloria was deep in denial, hoping he would get better and trying to keep up with the changes overwhelming her husband as best she could.
The couple decided to buy the condo in Holbrook. Having spent her life in the city, Gloria was reluctant to leave, she says, but in the back of her mind she knew that she probably wouldn't be able to care for David herself much longer. The facilities on Long Island would be better, she thought.
Once they moved, David's health deteriorated quickly. He didn't know colors anymore, and couldn't tell an apple from an orange.
She had to help him shave because he would cut himself. He wouldn't bathe himself and couldn't decipher hot from cold water. He began to wander and she had to follow him when he went to the mailbox to make sure he came back.
Her mild-mannered husband had also become violent. She would get into the shower with him to help clean him and he'd punch her in the face. Another time he knocked her down and she hit her head so hard she saw stars. "He didn't mean it," she says. I know he didn't."
Then, in January 2003, the couple went to buy dog food for Nina. David went into the store alone and when they came home, Gloria discovered that David had bought cat food. They went back to the store and as they exited the shopping plaza, David steered the car the wrong way onto the Sunrise Highway service road, driving straight into oncoming traffic. Gloria grabbed the wheel and the car slammed into a light pole. David walked away without a scratch. Gloria broke her hip and was hospitalized for three weeks.
When she got out, looking after David became even more of a challenge. Things were disappearing from the house, including her medications. He tried to leave the house half-naked in the middle of the night, and once gave Gloria a black eye when she tried to stop him. Still healing from the accident, she found herself chasing after him with her walker on icy sidewalks. Twice he tumbled down the stairs and injured himself.
"I wasn't getting enough rest," she says. "I went to sleep with one eye open."
She made plans to put David into a nursing home. It was the hardest decision she's ever had to make, she says, but she didn't know what else to do. "You can't expect people, even if they're your closest family, to pitch in on a daily basis," she says. "If you're alone, you have to find help."
Insurance rules mandated she had three days to get David admitted into a home from the hospital, where he was recovering from a fall. She first took David to a private nursing home in St. James, but the facility was not gated and soon nurses were chasing after him as he tried to escape. After three weeks, they told her she had to remove David.
She had only days to find David a new home and did not even get to see John J. Foley before he was admitted. But the facility impressed her. The rooms were big and clean, and when she did research she found they had the fewest health care violations.
"It's not what we want to do for our loved ones, but it becomes what we have to do," she says.
At first, the staff asked her to visit as much as possible because David was touching women's breasts, a compulsion that sometimes emerges in Alzheimer's patients.
All day David would wait by the window and look for Gloria. He was still verbal in those days and would ask her, "Why am I here?" and plead with her to "Please take me home." Gloria didn't even want to visit.
"I was devastated," she says. "All I did was eat junk food and sit in front of the TV . . . I had this terrible guilt feeling. I was depressed."
Looking for comfort and advice, Gloria called the Alzheimer's Association's toll-free number, often in the middle of the night. "I was a total basket case," Gloria says with a small laugh.
Lunch arrives on a blue plastic tray. The trays are color-coded according to feeding requirements. Blue means David still can feed himself. Gloria seasons the pureed barbecue chicken with salt and pepper, the way David likes it. She dips a plastic spoon into the piles of mush, and places the food into David's mouth. David enthusiastically juts his head forward in anticipation of the spoon.
"A little bit, a little bit," she corrects as David grabs a large spoonful of pureed chicken. She helps him take some away and then smiles as he swallows and a soft moan escapes from his lips.
"Oh, he likes it," she says. "He eats so well, thank God."
Gloria gives him some thickened milk to drink and he gulps it down, spilling it onto his lips and chin. She's brought gingerbread cookies for him. She takes out her sandwich but only gets two bites in before stopping to feed David pieces of gingerbread. Soon he is grabbing at several pieces at once.
"One at a time, honey," Gloria says, taking some of the cookie away. Nearby a woman is shouting "What do you want?" to no one in particular.
Gloria wants to visit her husband on Christmas but the bus doesn't run on major holidays. The thought of spending the day without David overwhelms her. Transportation issues aside, little prevents her from seeing David. When she showed up at the nursing home in the middle of a snowstorm on Valentines Day, staff were amazed.
"I said of course I'm here, he's the love of my life," she says indignantly. "You couldn't stop me."
After lunch, the staff leads residents in a game of toss, using a Velcro target and spongy balls. A worker tries repeatedly to get David to throw the ball at the target and after much coaxing, he finally hurls it at the net. Gloria claps and cheers.
"I look forward to the time here with him," she says smiling. "This keeps me going."
Gloria is excited. Earlier the residents watched the movie "Grease" and David appeared to follow the action in the film with his eyes.
They sit together in the common room, David wearing a white towel around his neck. He's been drooling a lot more lately, Gloria says. She wheels him closer to the table so that he can feed himself. He begins spooning a thick orange soup into his mouth.
"I feel good when he does this," Gloria says with a smile. "It's amazing."
Nearly three years ago, David was on a feeding tube. He had developed pneumonia and had stopped swallowing. Early in their marriage he had said he never wanted to be on a breathing tube, but had made no mention of feeding tubes. Gloria said a prayer and told doctors to put it in.
"I said if I don't try, I'll never be able to live with myself," she says. He was on the tube for two weeks. "I wasn't giving up on David, he's a fighter."
She has requested that David now spend all day Sunday resting in bed. A couple of months ago she showed up on the weekend and found David asleep in his chair, his neck bent over. This has to be better for him, she says. When she came to see him last Sunday, she tickled his foot and watched his face burst into a smile. She immediately broke down in tears. She can't remember the last time she saw him smile.
"I hope the nursing home doesn't close, the staff does such a good job," she says. "I know everybody and I can talk to people if I need to."
In the spring, Suffolk County Executive Steve Levy announced his desire to close the nursing home as a means of saving money for the county. His announcement and subsequent budget proposal which would shut the 264-bed facility next year drew criticism from workers and families. For Gloria, Levy's proposal has been a source of unending anxiety.
"I don't know what I'm going to do," she says. "This is his home."
Gloria wonders if she should have stayed in Queens. It was much easier to get around, everything was so close. "All that work to come out here to a good nursing home and now this," she says. She has been calling and writing legislators on her days away from the facility. "They all say not to panic, to wait it out. But I'm nervous."
She has also started looking into other facilities on Long Island. But many are even further away than this one and she worries some might not take David because of his incessant scratching and the care that his condition requires.
Most are also private and she's not sure if she will be able to afford it. As it is, this nursing home costs $347 a day. It cost her $6,000 to get a lawyer to help her prepare the paperwork and she paid $14,000 out of pocket for the three months it took to get Medicaid approval. To do so meant getting rid of all assets. Every July there is a re-certification requirement. "Every time I have to wait to see if there is going to be an increase in the amount that he gives," she says. "It's very stressful."
She begins trying to feed David thickened milk from a plastic cup, but he is having trouble swallowing it. He's been doing that a lot lately, she says. She gives him thickened water instead and David suddenly lets out a heavy cough, causing Gloria to quickly reach for a napkin and wipe up the wad of mucus that emerges from his throat.
Dinner finished, she picks up her bags, wheels David back to his room and places him next to his bed.
Along with her worries over the nursing home closing, Gloria is experiencing anxiety about her daughter and son-in-law, who live nearby but plan to re-locate down South in a year. Gloria has relied on them for financial help and support as she cares for David. Recently the stress caused such a spike in her blood pressure that she had to be taken out of the nursing home in an ambulance.
She turns on the 13-inch television that sits on his dresser. "Look David, it's 'Friends'" she says. "You used to love watching this." She tries to take his stuffed white dog away from him and he resists. "I'm sorry David, I have to put it away for you," she says, finally yanking it out of his grasp and placing it in a bag. She bought the dog because it resembles Nina. She recently brought Nina in to visit David but he didn't respond. Instead he just looked frightened.
Gloria's bus is coming soon and she rushes over to her husband. "David, I'll see you tomorrow, love you!" she says as she plants a kiss on his cheek.
When he was first a resident here, he was so aware of her presence that when she went to leave, she had to hide and have others distract him so that she could get on the elevators without him seeing her. He still follows her with his eyes, she says, but she is not sure if he recognizes who she is anymore. Leaving each night is still the hardest part of her visits.
"It's like leaving a child and you're going to work and you don't know what's going to happen in those hours that you're not present, even though care is supposed to be there," she says.
As she walks down the hallway, other residents who are waiting to be taken back to their rooms line the walls. "Are you going home?" a woman in a wheelchair asks Gloria. When Gloria says that she is, the woman moves her chair.
"I'm going with you," she says.
Another woman asks Gloria what she did wrong. "Nothing, dear, I'll be back tomorrow," Gloria politely responds, rushing to the elevator.
Outside, she is greeted by a foggy, rainy sky that's already dark, even though it's barely 7 p.m. The bus is waiting. "It'll be getting colder soon," she says as she gets ready to board. "I hope it won't be a harsh winter. I can't take it."