Alzheimer's hits a couple after half-century of marriage
Harriet Garzero and her husband, Edward, who has Alzheimer's, take a break from chores. (Sept 2. 2009) Credit: J. Conrad Williams Jr.
Harriet Garzero, 75, and her husband, Edward, 80, are a few years into their battle with Alzheimer's. Harriet is her husband's caregiver, and the two work hard at maintaining their independence and trying to preserve their active social life, even as Edward's physical health falters. Still in the early stages of the disease, Edward is cognizant of the changes taking place in him and aware of his possible fate.
Harriet is also aware and watches for signs of decline while Edward worries about the additional burdens placed on his wife because of the disease. The couple's four children, some of whome live far away, each deal with the disease differently and struggle with how to be long-distance caregivers to their parents.
Fall 2007
Even under the heavy lids of advancing age, Edward Garzero’s eyes take on a dreamy glow as he begins telling a story from his childhood about a Japanese tin boat that his father bought him for a dollar. Edward, 81, looks off into the distance as he vividly recalls the day he got the toy boat and took it to the lagoon at the Palace of Fine Arts in San Francisco. He lets out a boyish chuckle as he remembers his excitement that day, quickly followed by his disappointment as he watched the boat sink.
Edward loves to tell stories from his past, whether it’s his childhood in San Francisco or his 30-year career as a scenic artist on some of the biggest films of the past century. His body sunken into the living room sofa, he appears relaxed, laid back and willing to go with the flow.
Meanwhile Harriet, his wife of 51 years, is in her usual race against time, moving frenetically between rooms in their Center Moriches home, making phone calls and planning the couple's calendar.
Having always had an appetite for social involvement, Harriet, 76, and Edward are not about to let age or Edward's Alzheimer's put a stop to their active lives. Tomorrow is Tuesday, the busiest day of the week for the couple. First there’s physical therapy for Edward — he has peripheral neuropathy, a condition in which the peripheral nervous system is damaged, often causing pain, numbness and imbalance — then simultaneous support groups for each of them at the Long Island Alzheimer’s Foundation in Port Washington. The two travel more than 100 miles round-trip each week to attend the sessions.
>>PHOTOS: Click here to see the impact of Alzheimer's on the Garzeros
Edward begins to talk about how the group, designed for those in the early stages of the disease, has helped prepare him for the changes that lie ahead. He suddenly stops midsentence and rubs his forehead. Because he’s a thoughtful man, it’s often difficult to decipher if he’s choosing his words carefully or if he’s struggling to find the words at all. The silence continues.
"We used to call these senior moments," he says with a chuckle. He looks down at the floor. "It'll come to me."
Edward's clashes with words have become augmented in the nearly four years since he was diagnosed. It began with an inability to find the right word. Then a few weeks ago, he was asked to contribute to a journal that was being put together as a memorial to a deceased friend. Edward began writing down phrases but when he wanted to turn those phrases into full sentences, he hit a wall. Instead, Harriet did it for him.
She's more than happy to do such tasks, constantly adapting to the subtle changes in their well-ordered life, changes she is hesitant to acknowledge at times. Some things can't be ignored, like the silence that increasingly flows through their home. Over the past few months, Edward has found that loud noises irritate him. The incessant whir of a leaf blower or blare of the television has become intolerable. Even subtle sounds can interfere with his thought process. He used to play music while he worked or read but now, he says, it's too much to handle.
Even without the distractions, he finds that he has to often reread The New York Times or The New Yorker to full understand them. Throughout their marriage, Edward and Harriet often sat at the kitchen table and discussed the stories they had read that morning. But now Edward sometimes finds himself unable to review articles he has read with his wife. The stories just seem too complicated.
Although quiet has become indispensable to Edward, the couple's love and devotion remains on full display, their partnership in Alzheimer's naturally folded into the commitment they have nurtured for half a century. When they laugh, they look into each other's eyes. When they speak, they gently touch each other's legs. When they tell stories, they regularly interrupt each other and finish one another's sentences. The disease has been gentle with them so far.
"Sometimes I am shocked when I see somebody who's in the later stage and how withdrawn they can be," Edward says. He knows he doesn't fit the common perception of the disease. "I don't think . . . [people] think of people like me and I don't think of people like me either," he says to his wife.
Edward begins relaying a story about his days working in theater but he wrestles with the words he wants to use. Harriet pipes in with some help. "Good thing I know all his stories," she says with a laugh.
Minutes later, he is telling another old tale, this one a joke involving an American movie star in Toyko. "What's the punch line here?" he asks. He looks at his wife, searching her eyes for a sign of recognition.
"I don't know it," she says, her voice deflated, as if she has let him down.
"I probably should have told you this story," he says and the couple share a laugh.
>>PHOTOS: Click here to see the impact of Alzheimer's on the Garzeros
'Love's Labour's Lost'
It was the late 1950s and Edward was earning $80 a week working for a touring company doing Shakespeare's "Love's Labour's Lost." The company came through New Jersey and a friend of Harriet's took a job as an apprentice. Harriet, who was a junior at Manhattanville College in Westchester County, came with her roommate to see a performance and met Edward. Harriet was immediately smitten - but so was her roommate, who began dating Edward. He eventually broke up with her, and Harriet and the roommate said a novena to St. Joseph that he would come back and claim her hand.
"And he came back but he claimed my hand instead," Harriet says. Within months they were engaged.
After they married, the couple first lived in Astoria but after the birth of their first son, they moved to Port Washington where Harriet had grown up. Another son and two daughters followed, and Harriet was a stay-at-home mom while Edward moved from working on commercials to movies. He worked as a scenic artist on such films as the first two "Godfather" movies, "The French Connection," "The Hustler" and "Midnight Cowboy."
"He was an excellent craftsman," says oldest son Joe. "I learned a lot from my father, his sense of how things should look." Joe followed his father into the business.
The couple's Christian faith, along with their interest in social involvement, was a cornerstone of their relationship. Their parents worked hard and life at home was loving and good, the children say. Harriet was the disciplinarian, insisting on good manners and proper grammar. There was no question she ran the household, organizing activities and making meals.
"My dad really lit up at the dinner table," says son Peter. "He was very happy to sit there with the family and enjoy a meal, whatever it was. You could tell he was just happy to be there."
The couple moved to Center Moriches after Edward retired. Six years ago, Edward was diagnosed with peripheral neuropathy. Walking and balancing have become difficult for him and the man who used to climb scaffolding without batting an eye began using a walker.
Then, one day nearly four years ago, Harriet and Edward huddled around their computer to read an e-mail from their daughter Maria. Edward found himself unable to understand some of the words. They were simple, three syllable words, but they stumped the man with a master's degree in speech and drama.
"I just came up with a blank," he says, recalling the moment. "I couldn't put it all together." Ten minutes, later, Edward was able to read the e-mail perfectly. The couple became concerned.
There was little else to go on, except that Edward seemed to have a hearing problem. Harriet had read that often people with hearing problems are misunderstood as being cognitively impaired.
"She was after me because she'd say, 'Don't you hear me? I told you this,' " Edward says. "We went through this whole charade about a hearing aid."
"I guess really, it was that I had hoped that it would be that, that it would be hearing and not anything as serious as Alzheimer's," she says.
The couple went to see their doctor and then a neurologist and Edward was given a series of tests, both physical and cognitive. At the end of the testing, instead of a hearing aid, he received a prescription for an Alzheimer’s drug. The diagnosis: early-stage Alzheimer's.
As they drove home, the couple devised a way to tell their children. Back in Center Moriches, they sat down and Harriet typed up a letter. Edward edited it and made corrections. "We are both grateful that the 'incident' of last week gave us a warning and time to think and redirect our life and our activities," they wrote. "We're actually at the point of not only accepting this new way of life but embracing it!"
When she received the letter, daughter Maria, who had been a nurse, felt a pang of guilt. "I always think, God, I should have known because he was spacey and a little bit forgetful. But the thing is my dad was always a little bit that way. I remember driving in the car with him and he would get distracted looking up at the buildings and the architecture and explaining that and I loved that about him but it also meant sometimes he would forget that he was driving. So I didn't pick up that he was having anymore than normal sort of 'dementia' that goes along with aging."
Daughter Alix also had a background in public health, and the sisters gathered information. Soon after, all four kids came together in a diner just off the Long Island Expressway in Commack to discuss what they were going to do. They decided to see how things went, to check in regularly with their parents and each other. Then Alix found out about a seminar on Alzheimer's that was being held on Long Island. Thinking it was for patients and caregivers, Alix signed up herself and her parents.
"My folks were really excited about it and they really felt they were going to find a clear path forward," Alix says.
Instead, they discovered the event was really aimed at medical professionals. All three walked away shell-shocked. The conference offered information on activities for later-stage patients, suggesting the use of pipe cleaners for leisure projects and advising how to keep patients from eating glue.
"Sitting there with my dad, it was horrific," Alix says. "It was insulting to me. As a scenic artist, he made rooms out of plywood and a few other items. He would make something look like it was a 1940s courtroom - I mean really, pipe cleaners?"
>>PHOTOS: Click here to see the impact of Alzheimer's on the Garzeros
Harriet left the event terrified of what might be coming down the road. "We were walking across virgin snow on this one," she says.
"I felt responsible for having exposed both my parents to too much information too soon and the wrong kind of information," Alix says. "I felt like I had let them down and let myself down."
At the same time, Harriet and Edward made a decision that in addition to their children, they would be honest with all those around them.
"I knew I couldn't live trying to conceal that," Harriet says. "Edward was functional, we had a life and all that, but I would have had to hide so much and cover up so much. I didn't have time for that. I was too busy doing other things."
When making up a schedule of Scripture readers for his parish became difficult, Edward decided to tell his fellow parishioners as well. "It was freeing," he says. "If I hadn't had to come out and flat-out be honest with them, I was tempted to keep it a secret."
But the revelation did not come without bumps. Sometimes people treat Edward as though he is completely incapacitated, he says, ignoring him and talking only to Harriet.
"Our world has gotten very much smaller," Harriet says. "But it saved us an enormous amount of stress, trying to make things up, trying to prompt him, to cover up, so for us it was freeing. For our children, I think they appreciated the fact that we were saying, this is what it is, so if you're OK with it, we're OK with it."
Following the diagnosis, Harriet found herself watching Edward "like a hawk", waiting for any change in his behavior. Compounding the fear were her monthly visits to a local nursing home to help give Communion to Alzheimer's patients. "I used to get shaken by it. I'd walk out of there and I'd feel it, I was perspiring," she says. "And now, 3 1/2 years later, I don't feel I'm hardened and impervious to the condition but I feel that perhaps I have a stronger constitution."
Winter 2008
Harriet and Edward are on their way to Edward's neurologist in Great Neck. Edward is due to have his four-month checkup and the two anticipate what's coming: a memory test. Edward has taken the test so many times they know what to expect, and as they make their way into the medical building, Harriet preps her husband by whispering the questions to him.
"What did you have for dinner last night?" she asks.
"Chicken," he quickly answers.
"And what starch did you have?"
Edward hesitates, then offers, "Rice?"
"Yes, and did you have salad?"
Edward again hesitates before answering yes.
Dr. Jeffrey Kessler cheerfully greets the Garzeros and they update the doctor on Edward's problems with balance. After a few minutes Kessler begins firing off his memory test questions. Edward easily answers the correct day, month and year. He offers up "chicken" when asked what he ate the previous evening.
"What did you have with it?" Kessler asks.
"Umm, I don't know, probably some salad."
"Anything else?"
Edward looks down at the floor. Harriet watches nearby, her lips quivering slightly, eager to jump in.
"I don't know, what was it?" he says, finally looking up at his wife.
"Rice," Harriet quickly responds.
Kessler asks Edward to repeat three things: red roses, tablecloth and 63 Broadway. Kessler tells him to hold onto those things in his memory because he will ask him for them later. He then goes back to a series of questions, asking Edward who the president is, as well as the two presidents before him. Edward hesitantly names Bill Clinton but then draws a blank.
When Kessler asks him what the phrase "People in glass houses . . . " means, Edward can only offer up that it's about breaking glass. When Kessler presses him, Edward hesitantly offers more explanation. "It's something to do with self-reflection," he says. "People in glass houses . . . be wary of what you say because the glass may come in on top of you."
When Kessler asks him for the three things he told him to remember, Edward stops cold.
"This is hard," he says after a few minutes. "Pink, 35 Broadway . . ."
Edward sits, his head down and his hands folded, deep in thought. "Pink what?" he asks himself out loud.
"Roses," Harriet answers quietly.
>>PHOTOS: Click here to see the impact of Alzheimer's on the Garzeros
Caregiving from near and far
Harriet and Edward's children are still trying to figure out their role in this disease process. Peter, 49, who lives the closest in Middle Island, says he feels a responsibility to check in on his parents at least once a week. Joe, who lives in East Northport, works as a scenic artist and has five children, tries to get there as much as his busy schedule allows. "My brother is really the lifeline," Joe, 51, says. "He's definitely our eyes and ears."
Alix, 40, who lives in Highland Park, N.J., makes the trip every few weeks. But she envies her brother Peter for his proximity to their parents and feels guilt at not being able to do more. "It's hard for me as an adult child because I have stuff going on, too, I have a life, too, and I need to honor both responsibilities to them and responsibilities to myself," she says. "I feel like I'm inadequate in terms of giving back when they have given me so much." Her voice becomes muffled with tears. "I try not to beat myself up about it. But if I could change something, it would be to be closer so that I could do a little more, or a lot more . . . any more."
Her sister, Maria, 47, of Putney, Vt., also struggles with the distance. "This is what really sucks for me and it's going to be a problem for me from here on out, I just know it," she says, crying. "It's the difficulty of coming to some peace with the life that I've chosen with my husband and my children . . . I'm feeling a tremendous pull, not just a sense of obligation, but a real want, a real desire to take care of the people who took care of me."
Harriet and Edward don't want to place the burden of caregiving on their children. They have come to lean on their peers from their support groups, which Harriet says "probably saved our lives."
For now, they are able to retain their independence, to not have to rely on their children or anyone else in order to stay active and fulfilled. "We have a life," Harriet says. "When people say to me, 'How is Edward?' 'Well,' I say, 'we have a life.' "
Spring 2008
As Harriet and Edward sit in the waiting room of Dr. Kessler's office, Edward quietly reads an article about an Olympic runner who has artificial legs.
From her chair next to him, Harriet begins to stir. "What did we have for dinner last night?" she suddenly quizzes her husband.
"Steak and eggs," Edwards answers with certainty.
"And what else?" Harriet presses.
Edward pauses for a minute, then smiles and shouts triumphantly, "Soup!"
"We have to do this," Harriet says with a sheepish grin. "He always asks this and I am not the greatest cook in the world. My meals are not memorable." She offers a self-deprecating laugh but admits it's jarring when Edward can't recall the previous night's dinner. She talks of making the same meal for a week in a row, so that Edward might successfully pass the test.
After being led into the examination room, Dr. Kessler talks to Edward about his balance and walking abilities, but it's not long before they begin the memory test. Edward handles the date question with ease. When asked about dinner, he enthusiastically replies "I had soup that my daughter made. It was onion soup."
"Tomato" Harriet corrects.
"Tomato soup with onions and with uhh, what was that . . . "
"Croutons," Harriet quickly offers.
"What else did you have beside the soup?" Kessler asks.
"Later, I had dessert which was grapes and a pear," Edward responds.
"OK, good," Kessler responds.
Next he gives Edward the three items he must remember: red roses, tablecloth and 63 Broadway. When he asks him to name the president, Edward correctly says George Bush without hesitation. But asked to name any before him and Edward is silent. "Wow," he says, his arms folded and his brow furrowed in deep thought. "I don't remember."
Kessler asks him about the phrase "People in glass houses" and Edward chuckles and says "Oh dear. We've had so many discussions about this." After a long pause, he says, "It means you should look into your own self before you make judgments about other people."
"Very good," Kessler says enthusiastically. Now it's time to repeat the three items.
"Roses are red," Edward begins. "Ummm . . . there's a date in there someplace . . ."
"OK," the doctor says, before continuing on with the physical examination. As he does so, Edward begins a discussion with the doctor about art.
"Overall, I think we're doing OK," the doctor says when he's finished. Edward smiles.
As they walk out of the room, Harriet whispers, "Clinton."
"What?" Edward asks, confused.
"Bill Clinton was the president who preceded George Bush," she says.
"Oh right, yeah," Edward says.
"And it was red roses, tablecloth and 63 Broadway," she adds.
Keeping an eye on mom
No matter what the future holds, Edward and Harriet have decided they will not move into any of their children's homes, preferring to be around people "in the same situation." They already have looked at a facility in Westhampton and have taken out long-term care insurance that costs them $5,000 a year. "I don't want to be in anyone's hair," Edward says quietly.
But Edward remains anxious about how his declining health will eventually affect his wife. His children also say they don't want to focus so much on their dad that they forget about their mom and how her health may suffer from caregiving. Alix says she began worrying as soon as her dad was diagnosed.
"She really did spend a lot of time doing other things and focusing on things she felt were important and worth her time and now all of a sudden I felt she was getting thrown back into being the mother for an 81- year-old child," Alix says. Her mother has always been a multitasker, she says, but since the diagnosis, it has risen to an almost manic level.
"She's healthy and I think she's capable of taking care of him and I think it sort of drives her, too," says son Joe. "It's a little bit of a symbiotic relationship. She thrives on being a caregiver."
But Harriet says she knows that role can become complicated for a spouse, who must walk a fine line between partner and nurse. "I realize it's a line that I can cross back and forth over," she says. "Caregiver, wife, spouse, whatever, really in order to make sure, practically speaking, that we continue to move forward, I have to do both. Because if I were to say, 'I'm just going to be your partner, Edward, you lucky fellow you, and to hell with the laundry and to hell with the checkbook,' it's just unrealistic."
And having to take on more tasks and take over the chores that Edward was always in charge of has been empowering for her.
"I've found that I've done things that I never thought I could do," she says. Her children marvel at their 76-year old mother out mowing the lawn and preparing the couple's tax returns.
When she recently had trouble balancing their checkbook, Edward was able to figure out the problem right away. And some things remain sacred, Harriet said. Home decor and the garden are still his domain. "He has an artist's eye, I don't," she says. "It's still very much his field."
Spring 2009
It's Wednesday night and Edward and Harriet are gathered with friends in the living room of the large Victorian house adjacent to St. John the Evangelist Roman Catholic Church in Center Moriches. Home to a group of Dominican sisters, the house tonight is host to the couple's Scripture reflection group.
Harriet and Edward sit together as they always do. Although Harriet is the leader of the group of half a dozen worshipers, all participate, including Edward, who on this night gives a long, flawless Scripture reading.
A discussion of the readings takes place and as one woman talks, Edward nods in agreement and is about to speak. But the woman continues making her point for a minute before stopping and asking Edward what he was going to say. Edward has a lost look on his face.
"I forget," he says.
The woman apologizes while another studies Edward's searching eyes. "It's right there, waiting," she says. In a heartbeat, Edward's face lights up as he remembers the story he was going to tell.
Later, Harriet launches into an anecdote about a priest who once visited the group. A woman becomes confused, saying she has no memory of the visit. "Where was I?" she asks.
"You were sitting over there," Edward retorts, pointing to a chair across the room as everyone erupts in laughter.
Edward's humor may be as sharp as ever but his home life is changing. Several weeks ago, the couple decided to use their long-term care insurance so they could get a home health aide. "Edward is still able to do things for himself," Harriet notes emphatically. But she worries about leaving him alone in the house with his physical limitations. "God forbid there was a fire or a disaster or something; Edward can't be alone," she says.
But they also are preparing for a time when Edward will need more care. They realize, they say, that there will come a day when Harriet cannot do it all herself and they would prefer that there already be someone in place who knows Edward and the house. "You don't want to do something like this at the last minute," Harriet says.
The process of getting an aide has harrowing, she says, involving stacks of paperwork. And the insurance company requires the couple pay for the aide for the first 100 days, at a rate of $108 a day.
The woman comes one day a week and helps give Edward his medicine and his lunch while Harriet runs errands. Her time away is meant to be practical, she says. "I'm not going to see a matinee at the theater."
Although he feels his medications are helping keep his Alzheimer's at bay, Edward has noticed some changes. He's begun sleeping more, and mornings are hard. "It takes me a while to just get conscious of being here," he says. "And I do drift back into earlier times, mostly my teens. I think a lot about San Francisco, where I grew up. I not only think about it, but I'm kind of like in it."
Harriet also has noticed the increase in sleep. "He will sit through a football game with eyes wide open and attention really keyed in on it but if it's something he's not really interested in, he just dozes instead of staying with it," she says, turning to her husband. "I don't know if you're just impatient with it and just don't want to give it a try?"
"If it gets too complicated," he says.
"If it gets too complicated," she repeats, nodding her head. "That would be a good reason. I think that's fair."
He forgot how to turn the water off outside the other day, he admits to his wife. Harriet has taken over all of the yard work. "Small potatoes, really when you think about it," Edward says. "We have a life. We're different people but we're exchanging those differences. . . . I think. . . . At least we're open about the changes."
The physical transformation, unrelated to Alzheimer's, is what has been most noticeable, he says. "I always kind of prided myself on being quick on my feet," he says with a frown. Now he has trouble just maintaining his balance while standing. Unable to navigate the altar steps, he's resigned his post as head lector at the church. Instead Harriet has taken over and he coaches her.
Their father's limited mobility also has been most striking to the kids. The Alzheimer's has been less tangible.
"I really haven't seen any of the terrible side effects that I expected," says Peter. "My dad sometimes loses his train of thought in a conversation but he never seems to get frustrated by it. And that's kind of what I thought would happen. . . . but he just takes it all in stride."
Maria has noticed that her father seems to work hard at retaining cognitive function, asking her children specific questions and listening carefully as if he is exercising his brain. "The memory loss is definitely getting worse, it's creeping in," she says. "But he's still himself and I am so grateful for that."
While always a quiet man, Edward seems more so since the diagnosis, Joe says. For Alix, the biggest jolt came only recently.
Several months ago when she visited her parents, she showed her father the Google Earth Web site, which shows satellite photos of streets. She thought her father would get a kick out of seeing what his old neighborhood in San Francisco looked like today. The two spent hours on the computer combing through streets he hadn't seen in years, Edward sharing stories of his youth. But when Alix visited again recently, her father suddenly turned to her and said, "You know what we should do sometime? I found out about this thing called Google Earth and we can see the neighborhood where I grew up in San Francisco."
Alix was floored. "It really hurt because the memory of the afternoon that we spent looking at the pictures of his neighborhood was really intense and wonderful for me," she says. "But the fact that he doesn't remember that it was me --- I can't mourn that because it's not him. I can't take that personally."
Later, when she went to leave, Edward walked Alix to the door and they hugged and she told him that she loved him. "I love you too, Maria," he replied before quickly correcting himself. "Alix! I mean Alix, I know you're Alix."
They both had a laugh, but Alix was left with questions. "Was that just because he has two daughters and we look alike?" she says. "Or was it because of the Alzheimer's? Who knows?"
Father's Day 2009
It is midafternoon and the noise level in the Garzero home is steadily rising as more and more family members pile through the front door. All four children have come, many bringing their spouses or significant others and their children. Edward takes it all in stride, sitting quietly on the couch with a smile on his face as his children and grandchildren plant a kiss on his cheek and wish him a happy Father's Day.
Harriet is, as usual, a blur, running between kitchen and living room to make sure their guests' needs are met. As the afternoon rolls on, the cacophony only increases with simultaneous conversations as kids, teens and adults chow down on Harriet's homemade chili. After coffee and dessert, everyone relaxes in the living room and the jokes begin to flow.
Aside from offering a short quip, Edward is largely quiet. He appears to be following the conversations, but his contributions are minimal, as if all of his effort must be used to digest what he is hearing. "I do think more slowly," he says. "I don't feel like I'm in the mix with the kids."
Harriet leans over Edward and makes sure he has coffee. After Alix and Maria help her clean up the kitchen, Harriet finally allows herself to relax, flopping down on the couch and joining in the laughter.
For now, Edward can still hold a conversation. He can bathe and use the toilet himself and eat his meals without assistance. But Harriet is aware of what changes may come next.
"When Edward can't take care of himself, if that time comes, then we shift into another mode," she says. She worries about a time when Edward will become so dependent on her, so scared to be without her, that she will have no outside life. "I come and go as I please, basically. If I go out shopping or I go to the gym, or go to church in the morning, he's not afraid, he's not saying 'Where is she?' because he knows where I am."
Their children are also worried - about the changes that lie ahead but also about how those changes will affect their parents' lives. "In a sort of ghoulish way, I hope that he dies before it becomes really severe because that would be a much harder life than what he and my mom have now," Joe says.
Alix fears her parents' relationship may suffer as a result of this shift. "I think if she can manage to hold it all together without completely losing her marbles . . . or breaking windows or glasses, I'd find it pretty amazing," Alix says. "She's a detail-oriented person, she likes doing things a certain way." Alix becomes emotional as she tries to imagine a possible future with the disease. "I don't think she will be able to get everything squared away the way she would like and still care for him the way he deserves. The love that she has for him is expressed minute by minute and day by day with what she does for him."
At the same time, Maria says, her parents have shown grace and dignity in the way they've handled this disease. "They've shown me that this can be done in a way that is far more hopeful," she says. "The way they treat one another, the way they take care of one another emotionally and the tenderness that they show one another. It is sad to see this but it's also a beautiful thing to see what they've done with this challenge that they've been given."
All of the children are keeping an uneasy eye out for the aggression and agitation they've read so many Alzheimer's patients go through.
"I continue to be aware of the fact that he's going to slip away more than likely and it could be sudden or it could be very gradual," Maria says. "And it could be in a sort of peaceful way, where suddenly he's a kind of benign, sweet smiling person who looks at me blankly and doesn't know who I am or it could be the worst-case scenario where he's having hallucinations and he's angry and he's the exact opposite of who he's been."
Maria says that she feels the need to remind herself of this constantly. "Because if and when that happens, I know how I need to handle that and I need to just keep reminding myself, 'This is still my father. He still is that gentle and wonderful and loving man,' " Maria says as the emotion overtakes her and the tears arrive.
Peter fears doing or saying something that Edward may misinterpret. He still enjoys spending an afternoon with his father, talking about current events and articles they've recently read. His dad continues to seem the same to him, with great intellectual capacity and an ability to formulate opinions and articulately discuss those opinions, Peter says.
" 'Cause really, at this point, I just want to be able to sit down with him in the living room, and pass a nice 15 minutes or half an hour so that he feels like he had some time with one of his kids."
The disease's slow progression in their father leaves all of the children in a constant struggle with denial. But they cannot ignore the changes, and are steeling themselves for more.
"I don't want to ever lose respect for this disease and respect in the sense that it is there and it is progressing and I can't get complacent thinking this is just status quo," Maria says. "We've been really blessed with this nice, long stretch of time to get adjusted to the news and the diagnosis. But that doesn't mean it's all going to go in a sort of storybook way."
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