Mom and her teens care for dad with early onset Alzheimer's

Karen Henley tries to cajole her husband, Mike,

Karen Henley tries to cajole her husband, Mike, into responding to her. The late stages of Alzheimer's disease have robbed Mike of much of his ability to interact with his family. (Dec. 7, 2007) (Credit: Newsday/J. Conrad Williams Jr.)

October 2007

It's only 7 a.m., and worry already hangs over Karen Henley's head. Her sinuses have been acting up, and she fears she may be coming down with a cold. As with all of her worries, this one has her husband, Mike, at its core.

"It's bad enough when they're sick," Karen says of her two children, Courtney, 16, and Brandon, 14. "I try to keep them away from him. But when I'm sick, I can't stay away from him because I'm the one who takes care of him."


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She's resorted to wearing bandannas over her nose and mouth while around him, looking like some sort of caregiving bandit from the Old West. But even with such precautions, lying in the hospital bed next to him at night, Karen can't prevent the transmission of germs. And germs for Mike can lead to a whirlwind of more disastrous problems.

Horsing around the kitchen in their crisply pressed Catholic school uniforms, Courtney and Brandon chide each other, their voices rising to a shout. Karen angrily points at the open door of the bedroom where Mike, 42, is asleep.

She has to get Mike up gradually from his slumber, otherwise his muscle spasms can be particularly bad. And multiple spasms are often a precursor to an "S," the Henley family's code for something they fear too much to fully pronounce: grand mal seizure.

Even as she scolds the kids, Karen, 46, does not break her stride. She continues preparing Mike's food and medications as she maneuvers around the teenagers quizzing each other for an upcoming test.

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

She finishes preparing Mike's breakfast of eggs, sausage, cheese and hash browns, all of which she throws into a blender and purees to the consistency of baby food. She mashes up a banana and mixes in his five medications and vitamins. She thickens his Gatorade with a powder, which helps him swallow it: Mike will choke on regular liquids.

Next she moves on to his lunch: Boston Market honey-roasted chicken, which the blender transforms into a bowl of beige mush that she garnishes with butter and syrup.

Karen watches Courtney and Brandon head out the door. She is concerned about what caregiving is doing to them. Now that they are teenagers, they want to go out with friends and develop a sense of independence. But their presence is almost constantly required at home.

Keeping Mike in the house and having her children help take care of him is a decision she questions every day. But this morning, as on most, strapped to her tightly scheduled duties, Karen must wave away this worry.

Standing near her in the kitchen methodically folding laundry is her mother, Kathleen Roland. Roland, 73, and her husband, Walter, 68, get up at 4 a.m. every day to come over and help.

The extra set of hands is needed. School uniforms and blouses dangle like drapes from hangers lining the perimeter of the dining room. In the living room, a thick layer of dust coats the television. Dirty dishes overflow the kitchen sink.

"This is what a house looks like when there's a sick person," Karen says dryly before running off to get ready for her job as a legal assistant for a Syosset real estate lawyer.

At 8:30 a.m., Karen turns on the light in the bedroom she shares with Mike. Nathan McLean, 68, the home health aide, begins stripping Mike down and changing his diaper. When he is done, Nathan and Karen slide Mike down the length of the mattress and prop him into a sitting position on the edge of the bed. Mike's torso is slumped over, his shoulders slouched under the weight of his own body. His arms hang limply at his sides and his head droops down, his eyes unfocused and the lids nearly closed.

"Hey handsome, good morning!" Karen says, pushing back on his forehead and looking into his eyes. Nathan massages Mike's shoulders and gently pounds his back. Because Mike doesn't move and his body doesn't know how to take deep breaths anymore, he's prone to pulmonary embolisms and collapsed lungs. They also have to make sure Mike doesn't have any mucus blocking his throat. He has lost his ability to clear his airway by coughing - his body has forgotten how.

By 9 a.m., after Nathan cleans and dresses him, Mike is ready to be moved to his reclining geriatric chair, designed for disabled people. Nathan hooks one arm while Karen grabs the other and with a unified grunt the pair lift Mike into his chair.

Karen hoists the shades and Mike's head turns toward the window and the late autumn sun streaming through. "See outside?" she asks. There is no verbal or physical response.

She and Nathan wheel Mike over to his spot against the living room wall. Karen cocks her head and stares at him for several seconds, evaluating him as questions race through her mind. Does he seem "out of it?" Is he coughing more than usual? Will today be a good day?

She takes a nasal spray and pumps several puffs up Mike's nostrils. Then Nathan uses medicated swabs to clean the inside of his mouth so that he doesn't develop fungal infections, such as thrush. Thrush can cause lesions that make swallowing even more difficult for Mike. His ability to swallow - often the final function wiped out by Alzheimer's - is a constant concern for Karen.

She brings breakfast. After tucking a towel underneath Mike's chin, Nathan eases the spoon through Mike's tightened lips and waits as Mike moves the mushy food around his mouth before tentatively swallowing. After a few spoonfuls, Mike's head droops down to his chest again, and Nathan pushes it back up and continues feeding him. The endeavor is a test of patience and assertiveness. A meal can take an hour or more.

Karen feels blessed to have Nathan. She has been through her share of nightmare aides - one who left Mike alone while she went outside to smoke, another who put her feet up and fell asleep. Often they are not paid much - Nathan makes $9.20 an hour - and have no training in Alzheimer's. If Nathan gets sick or goes on vacation, Karen is rarely sent a replacement aide, so she must take time off from her job.

It is nearing 9:30 a.m., and Karen is running late. "I gotta go. Let me have a smile," Karen says to Mike, leaning in for a kiss. "You know that gets me through the day." Mike's facial expressions do not change.

"Come on," she says. His mouth reaches into a small grin. Karen beams.

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

The worry will follow Karen around all day. At lunchtime, she will retreat to her minivan to eat and maybe read a little, a once favorite pastime that's now an indulgence. Or, if Mike had a particularly rough night, she'll simply settle down in the driver's seat and set the alarm clock on her phone, then try to catch an hour of sleep.

 

She was wallpaper, he was lumber

Karen and Mike met in the summer of 1985 when both worked at the now-defunct Channel home improvement store in New Hyde Park. They started out as friends, but the rumor mill was soon ablaze with talk of the special connection between them. Then, one night at a party, Mike turned to Karen and gave her a devilish grin. "Wanna make those rumors true?" he asked.

At 24, Karen was four years older than Mike. Friends teased her for dating a "younger man." Mike was mature for his age, she told them. And he made her laugh. He also brought her back to the Roman Catholic Church.

The pair dated for three years, hanging out with friends at bars and bowling alleys. Early in their courtship, Mike took Karen to meet his mother. He seemed slightly embarrassed and spoke of how "goofy" his mother could act.

"There's something wrong with my mom," he told her. "We don't know what it is."

Several months later, his mother was no longer able to walk or talk. At 45, her illness was diagnosed as early onset Alzheimer's disease.

Soon she was in a nursing home, Mike visiting her after his classes at St. John's University, where he received a degree in economics in 1987.

In October of that year, Mike landed a job in sales with a building supply company in Farmingdale. That month he bought an engagement ring, and the couple married a year later in Holy Spirit Roman Catholic Church in New Hyde Park.

A couple of years later, they bought a house in Westbury, a squat white home with black shutters and a blooming dogwood tree in the front yard. In 1991, Courtney was born, followed two years later by Brandon.

Mike's mother passed away in 1992 at age 52 and he took her death hard. But Mike retained his sunny disposition and his generous nature, like the way he would place the newspaper on an elderly neighbor's stoop every day, never letting them know of his good deed. It was a continuous reminder to Karen of why she had fallen in love with him.

The kids were equally enamored. Mike was fun and goofy, and Courtney and Brandon giggled with delight whenever they were around him.

But by the late 1990s, Mike began to forget small things, such as where he left his wallet. Then he would forget to pick up the kids from school to take them to appointments. He became depressed and lost interest in the daily routines of family life.

Karen voiced concern to friends and family, but because of his age - he was only in his 30s - most dismissed her fears. Her frustration grew. Mike took little interest in her or the kids. When home, he would often just sit on the couch. Karen began considering divorce.

Confused by what was happening to him, all Mike could do was apologize.

"It's true I don't remember a lot of the things we have going on, even though you tell me a few times," Mike wrote to Karen in a December 1997 letter. "You have been an angel to me and I really do appreciate your being there for me when I needed you most . . . maybe we can set aside one day a month where just you and I can be together, by ourselves so we can remember why we fell in love with each other. We need to find our old selves again!! . . . Together I know we will make it."

 

December 2007

It's late afternoon and Mike has awaked from his nap.

Nathan spoon-feeds him thickened Gatorade from a plastic cup, Mike's eyes still squeezed shut behind his glasses. Courtney comes home from school and walks over to her father, giving him a kiss.

"Hey Daddio," Courtney says as she throws an arm around Mike's shoulders. "Hey buddy, how are you doing? I love you buddy," she says, searching his eyes for some kind of recognition.

At 16, Courtney is an improbable mix of giddy teen and serious adult. She speaks rapidly, her hands fidgety and uncertain. From behind her dark-rimmed glasses, her eyes reach out eagerly, continually seeking response. But they always dart back to her father, alert for a long cough, a mysterious moan or an unusual muscle spasm.

Courtney has limited memories of her father: vacations, birthday parties, playing around in the backyard. She still teases him about a trip to Adventureland in Farmingdale when he took her on a ride that scared her. These days when she suddenly jerks her father's geriatric chair downward to unlock the brakes, she chides him about payback. "I tell him, 'That's what you get for making me get scared,' " she says with a laugh.

Karen comes home and resumes her race to keep on schedule, breathless and haggard as if late for an appointment.

As she prepares Mike's food and nighttime medications, Nathan leaves. When Brandon emerges, Karen asks him to mash up his father's food while she prepares his bed. Once done, Karen feeds Mike. She watches his mouth intently to see if he has swallowed. "Come on, Mikey, swallow."

She moves her face closer to his, puts her fingers to his cheek and stares deeply into his eyes. "Swallow it for me," she whispers.

Sitting near her, surfing the Web on the family computer and trying to grab her attention is Brandon. "Mom," he says. "Mom!" Karen reluctantly turns from Mike to her son, who is attempting to show her something online.

Quiet and introspective, Brandon has even fewer memories of his dad: playing in the kiddie pool in the backyard, rooting for the Yankees together during the 2000 Subway Series. He relishes hearing stories of his father before Alzheimer's.

"I don't want to remember him just with the disease," Brandon says. "I want to remember the good times I had with him and the fun we had and his whole personality."

Courtney is making dinner, and Karen tells Brandon to help her. Reluctantly he tears himself away from the computer, and soon Karen can hear her children arguing in the kitchen. She shakes her head and lets out a long sigh.

Courtney comes into the living room and spots her mother's wistful look. "What's wrong?" she asks.

"He's not smiling a lot today," Karen says.

"Excuse me, I got him to laugh!" Courtney replies.

The family eats on wooden trays in front of the television. When Karen gets her pizza bagel, Courtney takes her mother's place at Mike's side. Karen sits on the couch and quickly wolfs down her dinner before she's up and running again, taking laundry from the dryer.

Courtney, glued again to the computer, goes on YouTube.com to play Queen's "Bohemian Rhapsody" for Mike - it's one of his favorites. "This is your song, Mikey!" Courtney says, making it louder. She and Brandon have not called their father "Dad" in years, not since he stopped responding to the term. The brother and sister begin singing. "Carry on, carry on," they croon to their father.

When the kids begin talking about a new DVD they want, Karen freezes. With just one income, money is always tight. "We were just starting out" when he was diagnosed, she says. "There was no time for a nest egg."

There is certainly no money for a nursing home for Mike, and the family is against putting him in one. If he were placed in a home, most of which cost more than $10,000 a month, his entire Social Security check would go toward the bill. Right now Karen uses part of that check to pay the mortgage.

Her own paycheck goes toward everything else, including the $1,100 she spends each month on health insurance for the family. A private benefactor helps pay for the children's Catholic school education. Money generated through fundraisers held by Mike's former employer helped keep her afloat for a while, but that money has run out. Each month she pays the bills she needs to and pushes aside the others. Karen fears a lien will be placed on her house.

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

 

The bedtime ritual

It's 7:15 p.m. and time for Mike to go to bed. Karen takes Mike's shirt off and rubs his body with baby powder before putting on a new shirt. She and Courtney each take an arm and on a count of three lift Mike's 160-pound frame from the chair and set him on the edge of the bed. As Brandon stands nearby, Courtney lifts up Mike's shirt and gently pounds his back. Brandon coughs. "Maybe we can do this without you," Karen says to him. "We don't want Daddy to get sick."

Karen inspects the big toe on Mike's left foot, which has been red. She takes off his sweatpants and begins rubbing his feet, looking for any sign of wincing, the only indication she can get that he might be in pain. They lay him on the bed in his blue adult diaper - his "blundies" or blue undies, as they call them. Courtney gets in beside him as she and Karen rub and stretch Mike's arms and legs, trying to prevent atrophy in his muscles.

Karen takes a wet washcloth and rubs it over his face. She hands another cloth to Courtney and together they clean Mike's entire body. As they do so, they inspect him, looking for any signs of distress or infection. Karen puts on latex gloves and they turn him over while she removes the dirty diaper. All the while, mother and daughter discuss Courtney's day at school.

The phone rings and Brandon comes in to deliver the receiver to Courtney. "Can I call you back?" she asks her friend from her spot lying next to her father. "We're just in the middle of getting my dad ready."

Karen slides Mike's checkered pajama bottoms onto his legs, adjusts his position on the bed and then collects the towels, wipes and dirty clothes from the rug. She puts an oxygen mask on him.

"All right Mikey, you're set, whew!" Karen exhales as she leaves the room. Courtney puts Scruffy, Mike's stuffed dog, under the crook of his arm and pulls up the blanket, sliding underneath with him. As she watches Courtney cuddle up next to her father, their faces glasses-frame to glasses-frame, Karen turns off the light and closes the door.

After talking to her dad about her day, Courtney returns to the living room. Karen and the kids continue to wind down for the evening. But they will stop to check on Mike every 15 minutes.

At about 11 p.m., Karen will crawl into the hospital bed with Mike, squeezing into the small space next to him. She'll want to drift off to sleep, but her senses will remain active, watching, listening, feeling to make sure he's comfortable. If he is hot, she will remove some of the blankets. If he's on his back for too long, she will turn him onto his side. If he is dirty, she will change him. If his oxygen tube comes off, she will put it back on. If he is coughing, she will massage his back. If he is shaking, she will rub his arm to let him know it's OK. If she finds him staring into space, she will touch his cheek.

She will let him know she is there.

 

 

An inkling of trouble

Karen calls it the moment that changed her life forever. It was August 2000, and she and Mike took the kids to Pennsylvania on vacation. They spent a great deal of time discussing plans and concluded that the couple would take Brandon to a baseball game while Courtney would go with a friend to a local fair. But in the middle of the ballgame, Mike suddenly turned to Karen and asked, "So where is Courtney anyway?"

When they came home, Mike underwent testing, including an electroencephalogram, or EEG, and mini-mental state evaluation, called an MMSE, both of which came back normal. Then, two weeks before Christmas, Mike was fired from his job of 13 years.

The couple went back to the doctor, who ordered more tests. In April 2001, Mike was given the news: early onset Alzheimer's. He was told he would live another five to seven years.

Within weeks of the diagnosis, the couple visited an elder law attorney and had Mike's name taken off the house and all other assets so that he would qualify for Medicaid. They also filled out a DNR - do not resuscitate - order. Mike made it clear he did not want any artificial means used to keep him alive.

"I just don't want to put you and the kids through this," Mike told Karen. If she needed to put him in a nursing home, he said, that was fine.

The couple struggled with how to tell the children, who were 7 and 9 at the time.

" 'Daddy has a disease,' " Courtney remembers her mother saying. " 'It's a disease of the brain . . . it's going to make him forget things and it's going to make him angry at times, but he's still Daddy. When he does these things it's the disease, not him.' "

Courtney ran upstairs screaming. Brandon broke down crying. "Is Dad going to die?" he kept asking over and over. Mike and Karen held onto their kids and together as a family, they cried.

 

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

 

January 2008

Courtney has been selected by her high school, Kellenberg Memorial, to be in a group representing the school at a March for Life rally in Washington, D.C. But even as she talks about the bus ride and being with her friends, worry hangs on her brow. "I want to go, I'm excited about the trip," she says. "But I don't like to be away from home too long."

At an age when many teenagers are trying to escape their parents' clutches, Courtney has avoided spending time away from the house.

"You can't live your life thinking, 'What would happen if . . . ?,' " Karen told Courtney. "You're too young for that." Courtney countered by asking why her mother didn't go anywhere anymore.

"Because I'm in charge of Daddy," Karen answered. "It's not your responsibility, it's mine."

There's another, looming trip that is much more extensive: going away to college. Courtney has already said she will not go far - a few hours drive is her limit.

"Because sometimes - and I know that she does this because she loves me and she wants me to have fun - but my mom will tell me that he's fine, and then I'll come home and I'll find out that he had a bad coughing fit that night or something," she says.

Courtney gets angry with her mom at such times, which renew her conviction that her place is at her father's side. "This is going to sound kind of funny, but I like to help out with my dad. He might not be, you know, able to do everything a regular dad might be able to, but it's still fun; he's still my dad."

The kids did not notice much of a change in their father at first. For Karen, the adjustment was immediate and harsh. Most difficult was having to leave for work every day. "I knew this was a fatal disease, and I had to get up and go to work," she says. "The short time that I had, I couldn't be here with him. And he was here by himself to think about things and nothing to keep him occupied."

Mike's young age prevented him from getting into any clinical trials. Adult day care programs were also geared toward senior citizens. For a while, Mike attended a program in East Hills, but he was not comfortable there. The TV was turned up loud for the elderly attendees, and the music they listened to was from the 1950s.

As Mike's cognitive functions diminished, he often made comments that were inappropriate or repetitive. He became easily confused in his own house and urinated in odd places, such as the garbage can.

As he slid into the grip of the disease, he kept a journal, whose entries go from February to October 2002. In the beginning he is lucid and optimistic: "I believe that we all will be taken care of. God gave us the strength to carry on. He will never forsake us," he wrote in February.

In March: "This has got to get better before I lose my control, which I hope does not happen anytime in the near future . . . I am still the person I have been."

When it got to the point where Mike couldn't remember how to use the phone, Karen arranged to have her mother or father with him at all times. Mike became resentful.

"Basically, I feel like a caged animal with everyone staring at me," he wrote. "For most of my life, I have been in charge of my life. Suddenly all that was stripped away from me when I realized how much of this disease has almost taken everything I have left . . . I am so tired of being this way."

Late in 2002, Mike's older brother Rich was diagnosed with early onset Alzheimer's. He would die several years later at age 44.

During one of the last times they attended church together as a family, Karen watched as Mike forgot how to bless himself during Mass.

"I am very tired of this stupid disease," Mike wrote in April 2002. "I am a big burden on my family. Maybe I should be put in a nursing home. . . . No driving, no working, no life, no reason . . . why me?"

As Mike's despair became more pronounced, his writing became almost illegible. "Courtney and Brandon are feeling as if they have to watch over me," he scribbled in July. "This is not fair to everyone." The next month he wrote: "Yesterday I had a bad day. I couldn't even make a complete sentence . . . All I want is to have a normal life. I don't want to be dependent on other people . . . I want my family back . . . SOON!!!"

 

 

February 2008

Karen sits in the middle of an expansive physical therapy room in a Garden City strip mall, her left shoulder supporting an ice pack as she stares vacantly out the window. Her shoulder has been hurting for some time - she feels the burn every time she lifts Mike - but she has put off treatment for months.

Karen sits alone but is surrounded by other patients along with the clank of weights and the blare of various ESPN channels from the televisions dotting the room. The physical therapist frequently checks on her, and Karen squirms under all of the attention. She's not used to being the one receiving care.

Several weeks ago, Nathan threw out his back lifting Mike, and Karen has had to use her weekend aide, who works fewer hours and cannot lift Mike herself. Meanwhile, Karen's boss told her that because of the market slowdown, he is cutting her salary by $200 per week.

The mounting anxiety finally manifested itself in the form of eczema, a rash that has spread all over Karen's legs. She scratches until she bleeds.

The therapist says her shoulder injury is caused by repetitive use of her arm. He tries to persuade her to let Courtney do more: "You've got to do that; you've got to give yourself a break, OK?"

 

Trouble out in public

Soon after the family returned from a 2003 trip to Walt Disney World - their last family vacation - Mike began having difficulty being out in public. Bright lights and noises confused and upset him. In a King Kullen, he became angry in the checkout line, swinging his arms and shouting. Courtney and Brandon took him out to the car to calm him while Karen paid for the groceries.

"Everything about this disease is tough," Brandon says. "But seeing him being slowed down to something out of his control . . . you don't really expect this to happen just because of a disease. Usually people just get sick, you know. But his whole character and his personality has been changed because of it."

In the house, the family walked on eggshells.

"Like all brothers and sisters, we would argue from time to time, and that was one of the big things that would set him off," Courtney says. "There would be a few times where he would go to punch something and we would be in the way and have to duck, but he wasn't aiming at us. He was never violent until this."

Karen began locking the doors after Mike started wandering from the house, forcing her mother to chase him down the street. Usually when Mike tried to leave, her mother was able to divert his attention and he would give up. But one day in the summer of 2004, Mike was adamant in his quest to get out. When Karen's mother refused, Mike punched the wall above her head, leaving an apple-sized crater in the kitchen Sheetrock.

Karen didn't recognize this man before her. Fearing for the children's safety, she decided to admit Mike to a psychiatric hospital.

"I didn't know what he would do," she says. "To see him like this and see this take over him, it was very scary for me, so I couldn't imagine what it was like for the kids and my mom, so I knew I had to have him put into the hospital."

The hospital put Mike in a ward for older people with dementia. When Karen turned to go, Mike tried following her out the door. Crying hysterically, he screamed to her, "Why are you doing this to me?"

She returned to the hospital early the next morning and was greeted by a security guard who told her they were in lockdown because of a problem with one of the patients. It was Mike. He had become so combative that they tied him down.

Mike was moved to another floor with younger patients. After weeks of trying different medications, he calmed down. He came home, but after developing stomach problems from the pills, he was readmitted for several more weeks.

Courtney celebrated her 13th birthday with a party at the hospital. "That was as nice as it was going to be," she says.

Mike came home having lost many physical abilities because of the medications. He needed help walking and soon started wearing adult diapers.

It was an excruciating trade-off. "We could live with him being angry and violent, or we could live with him on the medications," Karen says. "It's a decision we had to make."

 

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

 

May 2008

On a Tuesday night, a friend drops by, and Karen, caught up in the much-needed conversation, is late giving Mike his medicine. She feels intense guilt over this when he begins shaking badly at dinner and again at 11 p.m. At 4 a.m., he has a grand mal seizure. At 8 a.m., he has another. He's never had back-to-back seizures.

After getting Mike to the emergency room, Karen sits at his bedside for three hours as he is taken through a battery of tests. She asks a nurse about getting Mike his medicine, and is told there's a delay with the pharmacy. He doesn't get his medicine until eight hours after he arrives at the hospital. He is admitted into his own room more than 12 hours after entering the ER.

When Courtney and Brandon come to the hospital, they are furious with their mother, accusing her of concealing their father's condition from them before they left for school. "What else aren't you telling us?" they angrily demand.

By the following day their anger has subsided. Brandon shuffles into Mike's hospital room with a "Get Well Soon" Mylar balloon. Near the bed, draped in black rosary beads, is a card signed by the whole family. "We all can't wait for you to come home but first we want you feeling better again" is handwritten inside. On a nearby table sits Karen's lunch: soda and a bag of chips.

Karen and her mother discuss plans for tomorrow. Hospitalization always requires an even more delicate balancing act for the family's tight schedule. This one coincides with Courtney's driver's education, as well as her school ring banquet tomorrow night.

"She's got to be picked up at 11 p.m.," Karen's mother reminds her.

"Ma, that's the least of my problems," Karen snaps. Mike hasn't eaten today.

She leaves to look for a nurse and returns with a small container of applesauce. "Let's see if you're ready for this," she says. But Mike doesn't swallow the sauce willingly and a dejected Karen puts the container away.

When Courtney arrives, she tells her mother about a planned lunch with friends tomorrow at Chili's.

"Oh, Courtney," her mother says, exasperated.

"So I can't go?" Courtney says. "You get mad at me any other time because I don't want to do anything and now - "

"OK, Courtney," Karen says, too tired to continue the fight.

"And there's no driver's ed tomorrow," Courtney adds.

"Oh, thank you!" Karen says as she looks up to the ceiling and crosses herself.

 

More setbacks

A week after entering the hospital following his back-to-back seizures, Mike has another setback. He begins coughing heavily and a nurse explains to Karen that he might have gastroesophageal reflux disease, or GERD. The doctor spoke of releasing him, but Karen is not sure. She's been down this road before, having Mike come home only to end up back in the hospital days later.

"Believe me, I'd rather have him home," she says. "He's more comfortable, it's cheaper for me - I can't tell you how much this costs me."

A big part of the expense is paying for an aide to stay at Mike's hospital bedside. Medicare will not pay for an aide while he's in the hospital, so Karen pays out of pocket. A significant hospital stay, such as this one, will end up costing her $2,500 or more.

Courtney arrives and Karen quickly fills her daughter in, telling her that her father hasn't eaten since 4 p.m.

"He didn't eat anything today?" Courtney asks.

Karen loses her patience. "No, I told you, this is since 4 p.m."

"OK, I didn't know!" Courtney responds, throwing herself into a chair and picking up her homework. "Don't get mad at me because you're worried about Daddy."

Mike begins to cough and moan, his face growing red. Karen goes to find a nurse, but there is a shift change and the hallways are deserted.

"He's wheezy-ish," Courtney tells Karen when she comes back.

"That's why I'm trying to find somebody," Karen says, irritated.

"What are they going to do?" Courtney asks sarcastically under her breath.

"Courtney, enough, OK?!" Karen yells back.

"I'm just telling you," Courtney says. "You get to say what you think, why can't I?"

A nurse comes in as Mike's coughing accelerates, the garbled sound mixing with the steady beeping of his IV monitor. The nurse takes his blood pressure and sees that it has spiked, and Mike has soiled himself. Karen looks on, a blanket of concern shrouding her face. "It's OK, sweetie," she says, kissing his forehead.

Mike's coughing subsides just as the resident doctor on call arrives. When Karen explains he's been coughing since 4 p.m., the doctor looks at her. "And this is new?" The doctor says the coughing may mean Mike has aspirated - when food or liquid enters the lungs. He will order a chest X-ray but it's best to just watch Mike, he says.

After he leaves, Courtney is agitated, telling her mother that the doctor doesn't seem to realize that Mike could aspirate without coughing. "Why didn't you say something then?" Karen asks.

"Because they think I'm stupid because I'm not an adult!" Courtney's anger and fear dissolve into hot, relentless tears, and her mother takes her hand.

Mike suddenly coughs and spits up mucus, causing mother and daughter to once again return their attention to the patient.

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

 

A life of compromises

The Henleys have learned to trade spontaneity for a healthy patient. In place of movies, restaurants and trips to the beach, Karen and the kids appreciate a new kind of enjoyment, the kind made of smiles, eating a full dinner and steady blood pressure. "That's a good day for us," Brandon says with a grin of achievement.

And on those days when Mike laughs one of those long, belly-shaking chuckles, his arms and feet moving wildly as his dimples stretch deeper, he looks happy to be home with them. On those days, they say, they know it's all worth it, that Mike is where he should be.

But living in a house where freedom is a privilege can be rough on a teenager.

"I have great friends, but some of them - it's hard for them to realize that I just can't get up and go like everybody else can," Courtney says. "They'll call at like 8 p.m. to do something at 8:30 p.m., and I won't be able to go because I can't just leave, I have to help out here. Which is no problem for me, because I like helping out, but sometimes I don't let myself go because my mom will tell me she'll figure something out . . . but I know it's easier for her if I stay here."

By contrast, Brandon tries to go out often and does his best to not carry the burden of his father's illness along with him.

"There's always that thing in the back of your mind that's like, I wonder what's going on at home, is my dad OK? Is he eating, is he drinking? All that stuff," he says. "To me it's easier to just enjoy myself than it is my sister because . . . she wants to know right away when something happens. To me, I wouldn't say I don't care 'cause I definitely do. But I just want to sometimes enjoy myself and hanging out with my friends is the way I do that."

Even though their routine is restrictive, they have become so accustomed to it that their father's care - feeding, even diaper changing - has become the norm.

"And if that changes, we'll probably be lost," Brandon says. "We won't know what to do."

For their mother, their involvement is a necessity.

"They've grown old beyond their years, and I don't know that that's a bad thing," Karen says. "I do what I can to make sure that they do have their childhood. They do miss out on a lot of things, but at the same time I've been here alone at night getting Mike into bed because I can't tell them no."

In addition to her children's caregiving roles, Karen sometimes relies on them for emotional support. She tries not to burden them, but the caregiving world can be a lonely one. "When things happen with Mike, everyone turns to me to ask 'Will he be OK?' " she says. "Who do I turn to?"

Caregiving duties aside, alienation is what Karen has struggled with the most. Mike's surviving older brother, who is Courtney's godfather, has not had contact with the family for the past several years. One by one, cherished friends have disappeared from her life. Somehow Alzheimer's - as if it were contagious - has chased off a lifetime's collection of support. An offer to take the kids to the movies, a card with kind words - Karen longs for any scrap of consideration and compassion for her situation.

Courtney and Brandon understand their mother's anger and loneliness. But they also understand there's only so much she can share with her children.

"It's hard on her because it's her husband," Courtney says. "It's my dad but it's her husband. I have my brother to talk to. She's got no one to talk to . . . I feel bad that a lot of times I can't think of anything to say to her."

 

 

June 2008

Mike spends 21/2 weeks in the hospital, comes home and five days later is readmitted, this time with pneumonia. He's still not eating or drinking as much as he used to. Karen tries talking to the kids about the possibility that their father may not bounce back this time. Brandon becomes quiet; Courtney, angry.

Mike is home for a few days when Karen gets a frantic call at work. Daddy is having trouble breathing, Courtney tells her. That night, Karen and Mike are once again in the ER. The process of diagnosis by elimination begins once again. "Mike, I just wish you could talk," Karen whispers.

The next day, after only a few hours of sleep, Karen sits reclined in a chair in Mike's hospital room, her eyes watery and bloodshot. Because she cannot find an aide who knows Mike well enough to stay at the hospital during the day - and because the previous hospital stays have emptied out her bank account - Karen must now take off from work.

A nurse comes by to get Mike's information just as aides arrive to change him. Karen asks about the food Mike will receive. The nurse says she should speak to the dietitian and Karen lets out a sigh. She's asked for the information three times since yesterday.

Karen then asks the nurse about getting Mike's seizure medication and the nurse tells her that they can't get some medications on this floor. Karen tells her that Mike received the medication just last week when he was here.

"He was on this floor last week?" the nurse asks.

"He was in that same room last week," Karen says, her voice tinged with disbelief.

As the nurse walks away, Karen curses and with her voice rising in annoyance repeats, "He got it last week!"

 

 

July 2008

Three hospital stays in two months and continued lack of sleep have taken a toll on Karen. Overcome by exhaustion, she brings up the subject of hospice care to Courtney and Brandon. She hopes that by enrolling Mike into hospice, she will get access to a nurse on call. Hospice is supposed to be for the last six months of a person's life but it can be extended indefinitely, she tells her children.

Under one hospice option, they can continue to take care of Mike at home, but there's also a facility in Melville, she says. Maybe they can take a tour? Brandon says he would go visit, but Courtney refuses.

"My concern is that I want to make sure they're not going to be like, 'Oh, he's got this and this infection, this is it, we're just going to leave him be, we're not going to treat him, whatever,' " Courtney says.

Keeping Mike at home has been a nonnegotiable point for Karen's kids.

"If I get upset one day, if I get frustrated and I'm just spent and I just can't take it anymore and I insinuate or even say to them, 'Maybe I have to give up and put Daddy somewhere,' I can't even begin to tell you their reaction," Karen says. " 'You will not do that, we're not going to let you. We'll do whatever we have to do to keep him at home. We're keeping him at home and that's final!' "

Karen also wants to keep Mike at home, but hospice could offer her much-needed support. "I just want someone to turn to when the decisions become too much," she says.

After a couple of weeks, Courtney, although still skeptical, relents and the entire family visits the Melville facility. On a tour, Karen sees the sunny terrace and notes, "It's nice, it's not depressing." Turning to Courtney and Brandon, she says enthusiastically, "It's nice, right?"

Both nod their heads silently in agreement, Brandon with his hands stuffed into his basketball shorts while Courtney keeps her arms tightly folded across her chest.

As they are about to leave, Karen gets a call from social services regarding Mike's hospice approval. They will come to evaluate him, but Karen is worried that they may deem him as needing too much care to remain at home under hospice and instead place him in a hospice facility.

"Looking at Mike, he's still in the same position he was," Karen says in a voice that's half statement, half question.

"But his face is very drawn now," her mother says.

"Grandma! Compared to us, maybe," Brandon says.

"Yeah, compared to us he's thin," Courtney quickly adds.

Courtney and Brandon are worried about their mother's decision-making. Mike was given only seven years to live and now that he has entered that seventh year, Karen seems, to them, fixated on the end being near.

"Now my mom is all paranoid that when something happens, it might be it," Brandon says. "It gets overwhelming because my sister starts arguing that it's not, it's just now, it's just temporary, and my mom just keeps on saying, 'But everything is pointing toward the end.' And then my sister starts getting upset . . ."

 

 

August 2008

It is just after 8 a.m. as Karen and Courtney nibble on a light breakfast in a small eatery on the campus of Vassar College in Poughkeepsie. Karen has taken the day off so they can look at colleges.

Karen's not certain how she will pay for college. Not wanting to deter her, she has not said anything to Courtney. But she is praying for scholarships.

An hour later, mother and daughter are on a guided tour of the campus. When the guide takes the group into the airy building that houses the school's center for drama and film, Courtney's eyes light up.

For some time now, Courtney has had a project in her head, a movie featuring a person with early onset Alzheimer's who has a young family. She's already begun writing it and picked out music for key scenes. She's even started up a list of actors who could play the lead in the film.

"And it wouldn't have to be a sad story; there are some very funny times," she says.

After the tour, and they have returned to their minivan, the doors barely close before Courtney excitedly says, "I really liked the film thing, Ma."

"I know, I saw a lot of things that would be perfect for you," Karen says as she hands her cell phone to her. "Call and see how Daddy's doing."

From overhearing the ensuing conversation Courtney has with her grandmother, Karen's face clouds over. "He's not smiling today?" she asks, letting out a heavy sigh.

It is early evening when the pair arrive home. Courtney races up to her father, "How are you doing Daddio?" she shouts, planting a kiss on his cheek. She excitedly relates her day to Brandon as Karen glides back into her caregiving duties, asking the aide how Mike's coughing was today.

The roller-coaster ride that has been this disease is changing for the Henley family now. Mike's smiles are more infrequent since he came out of the hospital. He is eating less, and Karen hopes they are not "forcing" him to eat for their sake. She tells Courtney and Brandon that doing what's best for Mike may not be what they want, but something they have to accept. Secretly, Karen wonders if they will ever be ready.

But for now, she has dinner to prepare, a bed to get ready, kids to look after, a husband to care for. She has a schedule to keep, and time is ticking away.

>>UPDATE: Click here for an update on the Henley family today

>>PHOTOS: Click here to see the impact of early-onset Alzheimer's on the Henleys

>>MULTIMEDIA: Click here to see videos, interactive graphics, more stories of Alzheimer's patients and caregivers, timelines and more

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

>>EMAIL: Give us your feedback at alzheimers@newsday.com

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