41° Good Morning
41° Good Morning

Alzheimer's: A devoted husband says goodbye

Bob Schreibman checks on his wife, Marge, who

Bob Schreibman checks on his wife, Marge, who has been unable to walk since a stroke in October. (Nov. 4, 2007) Credit: Newsday / J. Conrad Williams Jr.

It’s Wednesday afternoon in Port Washington, and Marge Schreibman is making her rounds. She stuffs her hands into the pockets of her jacket and circles the room with a childish grin that belies the wrinkles surrounding it. When she comes face-to-face with someone, her smile stretches wider. She mouths words that make little sense and uses her hands to adjust the person’s clothes.

Collars get straightened, undone buttons are closed, rolled-up shirtsleeves are taken down. She often follows her makeovers with a hug or a kiss on the cheek.

Marge, 85, sets her sights on Stephanie DePalma, director of Memory Lane Club, an adult day-care program run by the Long Island Alzheimer’s Foundation in Port Washington. Marge takes DePalma’s hand and gently strokes the back of it, her smile never fading. DePalma sticks a hand into Marge’s jacket and pulls out a tube of face cream that had been sitting on a nearby table. Marge likes to hoard, DePalma says quietly. Whenever it’s time to go home, Marge’s husband, Bob, has to pat her down.

Bob Schreibman is in another room at the foundation, sitting among fellow caregivers — husbands and wives, sons and daughters — and nibbling on a muffin. He’s finished the food shopping he cannot do with Marge around — she grabs things to pocket off the shelves — and has a few minutes to relax before his support group.

Between sips of coffee Bob is eager to discuss his sweetheart.

“The most lovable, kind, generous — you name the adjective — that’s what that woman was,” he says of Marge, whom he’s been with for 70 years. “It’s been a blessing  . . . until seven years ago.”

— — — — — — — — —
The labor of love

At 5:30 a.m. it starts.

Every day after waking, Bob, 87, changes his wife’s diaper and pulls the sheets off the bed. Then he gets Marge dressed — just putting socks on her feet can take 20 minutes. Next he prepares her meals and does the chores, ever mindful that Marge must be kept occupied the whole time. This usually involves giving her coloring books and a box of crayons. Bob keeps a constant eye on her: All it takes is a minute of distraction and Marge will get into mischief.

She’s already flooded the kitchen in their Forest Hills apartment three times.

The couple’s son, Richard, lives in Arkansas; their grandson, Phillip, is in Connecticut. Bob speaks to them twice a day, but both have their own families, so visits are minimal. “I don’t have anyone else,” Bob says, his voice cracking with frustration. “So it’s a horror.”
Memory Lane Club has been a lifesaver. When Bob first came three years ago, he was shaking. “I was questioning myself,” he says. “Am I doing the right thing? I felt alone. I felt like I wanted to open a window and scream out, ‘Help! Help!’ ”

He is comforted knowing Marge is being cared for, and he has found solace in his support group. “I never thought I’d sit and pour my heart out at a support group,” he says. “But I’m looking at them and thinking, ‘He’s talking about exactly what’s inside of me!’ ”
Becoming comfortable with leaving Marge there while he ran errands took a little longer. The first time, he went shopping. The next, he went to a movie. “I thought, ‘My God, this is a relief!’ It’s an oasis there,” he says.

Bob stops himself, recognizing the joy in his voice. Expressing such relief feels like a betrayal of Marge.

Amid the struggles, there are good days, he says. “She still feeds herself,” he says. “Though I don’t know how long that’ll last.”

And while she no longer recognizes their son, she still knows her husband. Bob feels his body flood with relief when he walks into the foundation to get Marge and he sees her light up and proclaim, “That’s my husband, Bob!”

He dreads the day she doesn’t recognize him. “I’m frightened at the thought, but I’m determined as long as I’m physically able and as long as I can, I will keep her at home,” he says. “That’s not just a bravado boast. I will keep her home.”

But Bob is sometimes caught off guard by the capriciousness of his wife’s disease. Like a few weeks ago, as the couple slow-danced in their living room to a big-band tune. From out of the fog, Marge said to him lucidly, “I love you so much.” He told her he loved her, too, and she began to cry. Soon he was crying as well.

“People say, ‘I know what you’re going through,’ ” he says. “They don’t know. You’ve got to come into that household, in the middle of those four walls and everything that goes on, and then you can say you know. It’s a sad, sad, cruel illness with the expectation of no light at the end of the tunnel.”

For now, Bob essentially takes things one day at a time, although he is looking forward to next Wednesday. The foundation is having a Halloween party, and the holiday holds special meaning: He and Marge met at a Halloween party, exactly 70 years ago.

There will be food and music. He and Marge will probably dance at the party, he says. His face lights up. “She loves to dance.”

— — — — — — — — — —
How their love began

They were teenagers when they met, skinny kids from the Bronx who hung out in groups of neighborhood friends.

In October 1937, Bob’s friends were all going to a Halloween party and pressuring him to go, too. The 17-year-old balked — he didn’t have a date. So his buddies set him up. When he got to the party, one of Bob’s friends took him over to a group of girls.

“And he brings me over to this beauty,” Bob says with a dreamy glow in his eyes. “And that was it.”

The pair spent the whole party dancing and talking. When Bob walked Marge home, they stood awkwardly outside her fifth-floor walk-up. “Can I kiss you good night?” he asked. She said yes, and he gave her a little peck on the cheek. Bob swooned.

After that night, Bob figured out the route she took home from school and would arrange to “accidentally” meet her. Then he would walk her home, carrying her books.

She lived in Fordham, he in Kingsbridge, their teenage romance blossoming along the Grand Concourse that ran between their neighborhoods. They went out every weekend.

On Saturdays they stopped by Krum’s Candy Shop for an ice cream soda before catching a movie at Loew’s Paradise. On Sundays they went downtown to the Roxy or the Paramount for a movie or stage show. Afterward they shared a grape drink and a hot dog before going back to the Bronx, talking the entire way.

They were married in August 1941.

— — — — — — — — — —
'Like she was last week’

On Tuesday, the night before the 70th anniversary of their Halloween dance, Marge’s disease suddenly took a detour. The couple were having dinner in their apartment, but Marge was not eating. Suddenly she leaned to her right, falling off the chair. Bob tried to get her to stand up, but she had no balance.

Half carrying, half dragging her, Bob took Marge to their bedroom. He put her in bed with her clothes on, pulled up the blanket and watched her fall asleep. He thought she would be fine in the morning.

The next day, Bob woke up and turned to Marge. “We’re going to the party!” he said excitedly. But she had no movement on her right side. She couldn’t even sit up. He called their gerontologist, who said it sounded like Marge had had a stroke.

Now it’s Friday, and Marge has not left their bed and Bob has not left their apartment since Tuesday. Marge has fallen out of bed twice as she tried to get up.

“The whole situation is just a sad, sad thing,” Bob says, shaking his head. His eyes are red-rimmed, his face a mask of fatigue.

Lori Goodcuff, a social worker from the foundation, arrives to check on the couple. She sits across from Bob, listening patiently.
In the week before her stroke, Marge became very restless, and he struggled to cope with her agitation. “Now she’s like this,” he says. “Boy, I wish she was like she was last week.”

Whatever happens, he still wants to keep her at home. “She could stay here forever as far as I’m concerned,” he says.

Goodcuff assures him there’s no reason his wife can’t remain at home.

Bob regales Goodcuff with stories of Marge from their younger days. “Boy, I wish you knew her when,” he says.

He talks about the possibility of her paralysis improving. Or maybe getting her into a wheelchair to take her back to the nearby park where they sat in warmer weather, watching the world pass as the sunlight danced across their faces.

With a wheelchair, they can sit there together once again, Bob says, rubbing his hands together as if strategizing his next move to outsmart his wife’s disease.

“When you’re together this long, she is me and I am her,” he says. “We do things as one.”

Goodcuff goes into the bedroom to check on Marge. She returns with a look of concern. She asks Bob if he would like her to get a doctor to see Marge. Bob says yes.

While Goodcuff is on the phone, Bob reminisces about how he felt when, after being married to Marge for 40 years, he saw her on a Manhattan street as they met for dinner.

“The sight of her coming toward me, I got an excited feeling,” he says with a lilt of incredulity in his voice. “That’s how she affected people. You wanted to see her, and it was a good feeling.”

Goodcuff is off the phone. Her face wears a pained expression as she brings up the subject of home hospice care. A person can only be enrolled in hospice if they have less than six months to live.

“It would be a good thing for you,” she says. “Hospice can admit her, they can provide help and a wheelchair.  . . . ”

A wave of sadness crashes over Bob’s face. “It’s just .  . . that has such finality to it,” he says. “But if it’s there, it’s there. I can’t put my head in the sand.”

Silence fills the living room, broken up only by the occasional blare of traffic that intrudes through the window facing Queens Boulevard.
“I just feel like you could get a lot of support from them,” Goodcuff continues.

Bob puts his head down and rubs his chin. He begins to weep, the tears flowing down his cheeks. Goodcuff moves closer and puts a hand on his knee.

After a minute, through sobs, comes Bob’s small, splintered voice. “If it’s got to be, it’s got to be,” he says.

Hospice is such a big step, he says, staring down at the carpet, unable to meet Goodcuff’s eyes. Several more minutes pass. Bob finally breaks the stillness that has enveloped the room, his voice reluctantly dragged up through his throat by the weight of resignation.

“I’ll do it,” he says.

Goodcuff tries to reassure him, saying that everyone has a point where they have to make this decision. “I’m going to call over there now, OK?” she says.

As she picks up the phone, Bob rests his elbows on his thighs and rubs his temples as if attempting to soothe a headache. Every now and then Goodcuff turns to Bob for information: Marge’s date of birth, her medications and her Medicare card number roll rhythmically off his tongue from memory. The earliest she can get a hospice admissions appointment is the next Tuesday.

“I know you don’t feel good about any of this, but do you feel OK?” Goodcuff asks.

“Something is happening in my life that I can’t control,” he says weakly. “With this . . . I feel nobody is ready for this. Nobody.”
“But are you ready to accept it?” Goodcuff pushes on.

“I’ll never get used to it,” he says.

“But it’s here,” she persists. “So if it’s Tuesday or next Thursday or three months from now ... you don’t have anyone here.”

Bob can only silently acquiesce.

“When you first get Alzheimer’s, they’re telling you what you’re in for,” he says. “You always know it’s there, waiting for you, but you hope it never comes. So now it’s coming.”

— — — — — — — — — —
Best seat in the house

After they married, Bob and Marge lived in a single room in a Bronx boarding house with a bathroom down the hall. Bob, a new officer with the New York City Police Department, patrolled the subways. Five months later, America entered World War II and the Army drafted him, assigning him to a military police company in New Orleans.

Bob was to be sent overseas. Wanting to spend time with him before he left, Marge went to New Orleans, but Bob’s commander wouldn’t give him a weekend pass. Having to be back on base by midnight, Bob couldn’t bring himself to leave her side. Instead he stayed with her until 3 a.m. and then sneaked back to base by crouching on the floor of a trolley car.

The overseas order never came. He was sent to Oak Ridge, Tenn., where he guarded the buildings where research on the Manhattan Project — the secret effort to design the atomic bomb — was being performed. Marge came to live with him and took a clerical job with the project. It was so shrouded in secrecy that the couple never spoke to each other about their work.

Just months after Bob’s Army service ended and the couple moved back to New York City, the New York City Fire Department accepted Bob’s application. For the next four years he was with Brooklyn Heights’ Engine 205, then moved to Engine 77, and then Marine 1 in Battery Park, working on a fireboat until he retired as a lieutenant in 1972.

Marge took office jobs and seasonal work in department stores as their son, Richard, grew up. Later, when Richard and his wife went through a divorce, Marge and Bob assisted in the raising of their grandson, Phillip.

Bob and Marge were a highly compatible — if not slightly paradoxical — couple. Bob could talk in depth about the latest Mets game or world events. Marge lived to entertain and loved dressing up in exquisite gowns accented with sparkling jewelry and high-couture handbags. Whether she was singing, telling stories or just trying to make her guests feel special, Marge knew how to light up the room. And Bob was more than willing to stand aside and watch her work her magic.

After he retired, Bob landed a job as vice president of a tile company, which required travel. Often on these trips he took Marge along, and she played the role of hostess, winning over his potential clients.

“She mingled like she belonged there, and I used to admire that,” he says. “You’d meet her for the first time and it was like you knew her for years and years.”

Once, Marge decided not to accompany Bob on a trip to Japan. Before he left she gave him 10 envelopes, one for each night he would be away, marked with the name of the city he would be in that night. Inside each was a card with a handwritten message.

For Kyoto, the card read: “When you left, part of me went with you. Take good care of it . . . and of yourself. You mean everything to me. I love you, sweetheart.”

When she did accompany him, Marge loved adventure. After two weeks in Spain, the couple jumped on a boat to Africa. At a hotel in Bermuda, she took on a British accent, fooling everyone she encountered.

From flying in the Goodyear blimp to riding atop a camel in the desert, there was little that frightened her. Relatives would often marvel and ask how she did it. “Well, Bob was with me,” was her standard response. “With him I can do anything.”

Marge was the eccentric Auntie Mame of the family. She loved to regale guests with fantastic tales that had little basis in reality. With a straight face she’d tell her nieces that she came from British royalty but was kidnapped and sold by Gypsies.

Once she donned a pith helmet, jumped atop a piano and, with a long cigarette holder dangling from her fingers and affecting her British accent, related tall tales about African safaris.

She would take her nieces on special day trips, often to Saks Fifth Avenue to buy them a pocketbook and then on to the Plaza Hotel for tea. At home, she loved to cook elaborate meals that she would highlight with a grand presentation of candles and fine linen napkins.

When all the guests had left, Bob would ask Marge to sing. In a smoky voice, she would croon Marlene Dietrich’s “See What the Boys in the Back Room Will Have.” And if you closed your eyes, he says, you would swear it was Marlene herself singing for you.
“She was a delight,” he says. “And I had the best seat in the house.”

— — — — — — — — — —
Searching for hope

In the days before Marge is admitted into a home hospice program, Bob finds hope in small signs: He sat her up last night, letting her feet dangle off the bed. She didn’t lose her balance and crossed one leg over the other. “I don’t know if this was a temporary improvement or what,” he says the next morning.

An aide from the foundation’s respite program, arrives. Bob is grateful for the help. The process of changing Marge —  maneuvering her body, pulling the sheets off the bed, taking off her clothes, sponging her and powdering her — is exhausting.

Next to their bed, Marge sits propped up in a plastic chair. The aide starts to brush her shoulder-length gray hair in long strokes, bringing a look of contentment to Marge’s face. Marge’s favorite toy, a stuffed dog, sits on a nearby nightstand, just above a shelf holding the sneakers placed there every night by Bob.

On the dresser, near photos of their son, grandson and great-grandson, all the caregiver’s tools are huddled together: a jar of Vaseline, a container of baby powder, a can of Lysol, a box of tissues and a jar of diaper rash ointment.

Bob comes in the room and a look of surprise splashes across his face. “Hey, you’re sitting up!”

Marge’s brown eyes carry a lost, vacant look. Her right cheek is sunken, her skin blotchy and raw. She starts to slide off the chair, and the aide grabs her under her arms and pulls her onto the bed.
As she lies in a favorite T-shirt, now tattered and stained with food, Marge still tries to look her best, running her left hand through her hair. Her right hand is immobile by her side. She smacks her lips together as if trying to taste some imaginary substance left on their surface. Bob takes a straw, dips it into a glass of water and captures some of the liquid captures the liquid into it bringing the straw to her cracked lips. Marge slightly raises her head and grabs his hand. After getting several drops in, Bob wipes her mouth with a tissue.

“It would be great if she slowly starts to use her arm,” Bob says, searching for any sign of improvement.

The walls of the bedroom, as with most of the apartment, glare an untouched white. Stacks of mementos remain piled in cardboard boxes in the guest room, decades of memories left waiting. Bob has no desire to hang anything up. Ever since they moved into this apartment two years ago, the focus has been only on caregiving.

“You lose all ambition,” he says. “Things collected from travels . . . what am I going to hang it up for? Display it for what?”

An instrumental version of Oscar Hammerstein’s “Can’t Help Loving That Man” flows through the room. Bob leaves a television on at all times, tuned to a station that plays old ballads to which he and Marge once danced. He even keeps it playing softly in the background at night. “So if she wakes up, it soothes her,” he says with a smile.

Marge hasn’t been eating or drinking much. Giving in to an old wives’ tale, Bob has made a pot of chicken soup. Last night he managed to persuade her to eat a few spoonfuls. But he’s worried about her getting dehydrated. He gets another straw of water from the glass and feeds it to her. “That a girl,” he says softly as she swallows. He wipes the dribbles of water from her chin, and she looks up at him like a schoolgirl gazing up at her first love.

He takes out a bottle of lotion, squeezes some out into the palm of his hand and rubs it on Marge’s face, gently massaging it into every wrinkle. Next he takes her hands and does the same thing, moving the tips of his fingers across her skin in slow circles.

Every night, Marge used to love to put lotion on before she went to bed, he says. And every night, she’d put a little extra lotion on her hands, lean over to him in bed and whisper, “close your eyes” before dabbing some on his face, making him laugh. “She’s one in a million,” he says.

He sees her react to his words. “Yeah, that’s you,” he says blowing kisses at her. Her mouth moves but nothing comes out. He puts the back of his hand against her forehead to gauge her temperature, then pulls away and gazes out the window. “God, it’s so beautiful out,” he says. “We’d be sitting in the park right now.”

Seeing her so helpless these past few days has left him terrified. “She’s going down, and she’s never gone down before,” he says.

— — — — — — — — — —
From crosswords to coloring books

Bob and Marge had thought their golden years would be a time of new adventures, a time to travel and enjoy the giggles of great-grandchildren and the quiet company of each other. But Marge’s Alzheimer’s diagnosis has taken them on a much more frightening journey.

For a time, Marge became aggressive. She’d scream at Bob, and he couldn’t go near her, couldn’t control her. They tried medications. Some did nothing, others only made the symptoms worse.

Sometimes Bob would find her at 3 a.m. in the kitchen fully dressed and making breakfast. When he’d ask her what she was doing, she would chastise him to hurry up. “We have to get going,” she’d say.
When she became incontinent, she fought Bob and wouldn’t let him come near to change or clean her.

“But Marge,” he pleaded. “We’ve been intimate all our lives.”
“Intimacy is one thing,” she told him. “This is something else.”

Bob silently wondered how much worse things would get.

Even so, there were traces of humor in the horror. Once he made spaghetti for Marge, placing it in a bowl on the table. He took three steps away to take some salmon out of the oven. When he returned a minute later, the bowl was there but the spaghetti was missing.

He asked where it went, but all Marge would say was, “She did it,” pointing to the empty space next to her. Bob searched all over the kitchen — in the refrigerator, in the cabinets — but he could not find it. Frustrated, he sat down to eat. Only later that night did he finally find the spaghetti, stuffed into an oven mitt. All he could do was laugh.

But more often than not, the scenes of his wife being overtaken by her disease heartbreaking. One afternoon, Bob found her trying to make the bed. The blanket was not large enough to cover the entire bed and this confused Marge. She pulled the blanket down over one end of the mattress, then when she saw the uncovered end, walked over and pulled the blanket up to cover that side. For two hours Marge walked back and forth from one end of the bed to the other, smoothing and straightening the blanket.

“And I’m sitting in here thinking, ‘God, it’s killing me,’ ” Bob says. “Such a simple thing and she can’t figure it out.”

Soon, her voice faded. Some days she could string together a few words. Sometimes she would form a whole sentence, one that even made sense. She would comment on a child they passed in the park or remark about the traffic as Bob drove her to the foundation.

Bob could never understand these sudden moments of clarity, but they offered brief glimpses back to the Marge he once knew. And each time, as the moment passed and she fell back into the clutches of her disease, Bob’s heart sank further.

Where he once brought his wife gifts of jewelry and clothes, he now brought her coloring books. “They say, ‘At least she’s quiet, she’s busy,’ ” he says of acquaintances. “But look what she’s busy with — the most basic thing, a crayon and a coloring book. And that woman, I wanna tell you, used to sit here and knock off a crossword puzzle; used to drive me crazy.”

If she came across a word she didn’t know, she would look it up and then write down the meaning in a notebook she kept so she could refer to it as she tackled a new puzzle.

“So there’s a mind doing that, and now she’s with a coloring book,” he says. “It’s like somebody taking a knife and carving out your heart.”

— — — — — — — — — —
No way to shut it off

A week after Marge’s stroke, a hospice worker arrives to start the home hospice admissions process. She and Bob sit at the dining room table, a stack of paperwork between them.

“They say grieving is the cost of living,” the worker says. Her words offer no comfort.

“She’s my best pal,” Bob says before dissolving into tears.

The worker is all business, but seeing Bob unravel prompts her to tell stories about various patients: a couple married 75 years, a woman who married at 82 and had a 25-year marriage. Bob is only half-listening.

The worker continues to take down routine information. “This is not a work-related accident, right?” she asks. “Is she retired?”

Bob is slouched, his arms resting on his legs. He answers the questions with the defeated slur of a boxer in the final round.

She asks if he ever spoke to his wife about a feeding tube. “She doesn’t want it,” he says in a whisper.

The worker talks to him about making sure Marge isn’t coughing when he’s feeding her or she could aspirate — when food or liquid enters the lungs. Sometimes it’s safer to not feed than to try to feed, she tells him. Bob asks whether he can get a wheelchair. He wants to take Marge to the park, he tells her.

The worker leaves, and Bob is once again left to wrestle with himself over the decision to place Marge in hospice care. “It’s one thing if I had six children and all were within hollering distance,” he says. “But when you carry the load yourself, the load is devastating, it’s backbreaking.”

Rising, he aimlessly picks up some picture frames, wipes them off and carefully returns them to their place. He stops to stare out the window. It’s a warm, bright day for November, the kind of day Marge would have enjoyed as they sat together in the park. “It’s nice out,” he says. “It’s a shame.”

He is lost, confused at what his role is now. Questions seem to linger in his mind, a puzzle he can’t quite solve, decisions he doesn’t want to make. “She’ll get care in a hospital, but she won’t get tender loving care,” he says suddenly. “A nurse won’t come and hold her hand and give her a kiss.”

He begins sorting through papers. He finds an expired car registration, sits back down as if exhausted from the effort, and once again looks out the window. “I can’t concentrate on television,” he says. “I love to read, but I can’t concentrate on newspaper articles. What can you do to shut it out? You close your eyes and you still see. There’s no way to shut it off. You can’t do it.”

A neighbor comes by to ask how Marge is doing. The woman offers to baby-sit if Bob needs to run errands. He is grateful for the concern and tells the woman about the wheelchair and taking Marge out.

The neighbor leaves and Bob goes into the kitchen to heat up some of his homemade chicken soup. But he can’t bring himself to eat it. “I have no feeling for anything,” he says. “My heart aches if she’s experiencing discomfort.”

White cotton clouds in the sky outside his apartment move across the reflection in his glasses as he gazes out the window. “If I could take her out in a wheelchair on a day like today, that would be wonderful,” he says softly.

— — — — — — — — — —
Holding hands

Four days later, just after 3 p.m., Bob went into the bedroom to see Marge. She stretched out her hand on the bed for him to take, as she had in a ritual throughout their years together: Each night in bed, fingers intertwined, they’d whisper “I love you” before falling off to sleep.

As he had done all those decades, he slid his hand into hers. She lightly squeezed his fingers and Bob snuggled up against her. She was breathing heavily. Bob whispered in her ear, “Marge, relax,” and her breathing slowed. So he got up from the bed and started to walk away. That’s when the aide told him Marge had stopped breathing.

“At least I was there with her in those last moments,” he says. “Maybe it comforted her.”

Later, after the funeral, at the grave site, the rabbi invites family members to pick up a shovelful of dirt to toss into the grave. As each person pitches the soil onto Marge’s coffin, Bob’s legs begin to shake. He can’t bring himself to do it.

He turns and walks away.

— — — — — — — — — —

‘So what do you do?’

It has been two days since Bob buried his love. He is in his apartment alone now, for the first time in six decades. The television he had kept on day and night is silent. The pot of chicken soup he had made for Marge after her stroke is in the trash.

Bob has been mourning the loss of his wife ever since Alzheimer’s first latched on to her seven years ago. Even as she mentally ebbed away, physically she was still there — her smile, her gentle kisses, her eyes filled with adoration. Her love.

Now he is experiencing her loss in simple moments, in everyday events they had shared as a couple that he now faces as a widower, alone.

Like the way she stood behind him while he shaved.

“This morning, I turned around and she’s not there,” Bob says. “So what do you do? You fall to pieces.”

He can’t bring himself to sleep in their bed. He’s taken to the guest room, spending his nights on a pullout sofa.

For the last seven years Bob’s life revolved around taking care of Marge as a full-time occupation.

“As heavy a job as it was to take care of her night and day these last few months, it was still a joy to have her with me,” he says.

— — — — — — — — — —

A time of firsts

Six months after Marge’s death and Bob has yet to find joy in his days. He must force himself to do things from the moment he wakes and coaxes himself out of bed. He finds some comfort with the foundation, where he volunteers several days a week, usually stuffing envelopes.

“I knew my purpose was to take care of Marge,” he says. But now, it’s not so clear. “Somebody up in heaven ought to let me know what I should do. Maybe it’s to bring my knowledge to caregivers.”

But he hesitates to become too involved. He sees Marge constantly in the faces of the patients.

He’s visited Marge’s grave several times, always with flowers. “I bring her up to date, [tell her] what’s happening,” he says sheepishly. “The intimate things between husband and wife.”

Her grave has only a simple marker. Bob still can’t bring himself to pick out a headstone. There is just too much of a finality to it, he says.

He has saved everything: her driver’s license that expires next year, a list she kept of all the movies the couple saw together, a pink slip she received from a seasonal job at a department store in 1937.

Little by little, he is sorting through her things. “I couldn’t do this two months back, so I guess there’s improvement there,” he says as he gazes at a yellowed photograph.

He has even held on to Marge’s used coloring books, her “creations” as he calls them. In his car Bob keeps a small tin that used to hold mints. It was one of the last things Marge took from a store as part of her hoarding. He holds on to it, he says simply, “because it’s something she touched.”

He refuses to rearrange or even touch her clothes. The sneakers under her nightstand remain in the exact spot where he placed them the day she had her stroke.

He is still sleeping in the guest room. Spending time in their bedroom is just too painful, he says. But something happened the other day.

Marge’s favorite opera was “Madame Butterfly.” When Bob found out that PBS would be broadcasting it live from Lincoln Center, he knew he had to act. So he went into their bedroom and turned on the TV.

Then he pulled up a chair next to the bed, closed his eyes and imagined Marge next to him.

“And from 8 p.m. to 11 p.m. we both sat and watched ‘Madame Butterfly,’ ” he says with a smile. “And it was a nice feeling.”

UPDATE: Click here to read an update on Bob Schreibman

>>PHOTOS: Click here to see photos of the Schreibmans

Click here to see photos, videos, more stories of Alzheimer's patients and caregivers, timelines, and more

Click here to search our resource guide for Alzheimer's groups, topics and Web sites

Click here for Alzheimer's A-Z: Answers to all your questions