Caregiver Stories

Annabelle's Story

    
    At the age of 84, Edith Mills Warren never dreamed she would be caring for her mother.

    But the oldest of six children has been tending to her mother’s needs for the past decade.

    Annabelle Woodard is 101 and still has memories of attending Winter Park City Commission meetings on integration. She remembers fixing meals for homebound seniors before helping to start the Mary Lee Depugh Nursing Center a few blocks from the Winter Park home she lived in for 63 years.

    Woodard lived independently after her husband of 60 years died in 1980. The retired housekeeper attended church and Sunday school at Mt. Moriah Baptist Church and was active in the Keychain Club, a social guild. She lived in her own home until 1997 when a heart attack forced her to move in with her daughter.

    Woodard reminisces that it was a tough transition to move to the Orlando neighborhood where she didn’t know her way around and had no friends.

    “But all my friends are gone now,” said Woodard, who is smartly dressed in a purple outfit. Her white hair is cut short and she closes her eyes occasionally as she gathers her thoughts.

    Glaucoma stole her sight six years ago. The heart condition and complications from diabetes keeps her indoors. She has buried three of her six children. Yet she said she has no complaints.

    “Through the mercy of God, I have good health and a good family,” said Woodard as she sat in a wheelchair in the living room of her daughter’s home. “I can’t ask the Lord for anything more.”

    Warren said she also is fortunate. Her mother can still dress and bathe herself. She receives 20 hours of care each week from the Visiting Nurses Association of Central Florida and caregivers from Woodard’s church visit weekly. The help is needed because Woodard lives on an income of just $600 a month but Medicare covers most of her health needs, her daughter said.

    Five of Woodard’s six children attended college, as well has her eight grandchildren. She also has five great-grandchildren and one great-great grandchild. One of Warren’s remaining siblings lives in a nursing home but she gets help from the rest of the extended family. They all showed up last year to celebrate Woodard’s 100th birthday at a local hotel for a reunion with 275 family members.

    Warren said her wish is that her mother could somehow regain her sight and will retain her health so she will not have to live out her days in a nursing home. Warren, who retired as a supervisor at Macy’s in New York City, said she has thought about putting her mother in an assisted living facility for a few days to take a break.

    “I just can’t do it,” Warren said. “She is so delicate.”

Autism and One Florida Family

    Adam Peterson cuddles up on the couch swaddled in a kaleidoscope-colored wool blanket. His mother massages his legs while she breast feeds his three-month-old brother.

    There’s hardly enough room on the suede couch for Adam. He is scrunched beside two of his older brothers who are watching a Thomas the Tank Engine video.

    Adam, the third of six boys, is autistic.

    The beautiful boy with true blue eyes lives in a world of his own. One minute he is high energy - jumping on a mini trampoline in the family room. The next minute, he wanders off to be alone with his thoughts.

    Not an easy feat in a home with eight family members and the four youngest in diapers.

    The Petersons are one of the estimated 1.5 million American families affected by autism. A 2007 Centers for Disease Control report found that 1 in 150 children in America today have an autism spectrum disorder (ASD). And the numbers are growing at a rate of 10 to 17 percent per year, according to statistics from the U.S. Department of Education.

    Autism is a developmental disability that typically appears during the first three years of life that affects brain function. Autistic children and adults typically show difficulties in verbal and non-verbal communication, social interactions and play activities. It is four times more prevalent in boys than in girls.

    Adam’s lack of speech at 27 months was one of the first signs that he was not developing like his brothers. He also had poor eye contact and would twirl while watching videos. Doctors did not diagnose autism until three months before his third birthday.

    Betsy Peterson said the doctor spent time explaining to the couple that parents of autistic children are more likely to divorce during the first 10 years of the child’s life. The Mormon couple turned to their family and church for help. Family and church members will bring meals or help baby sit to give the Windermere couple a needed a break. When they moved from Pennsylvania to Florida, they chose a home near a Church of Jesus Christ of Latter-day Saints.

    Joseph, 8, Gordon, 7, Sam, 4, Max, 2 and Spencer, three months, don’t interact much with Adam. Their mother said they get annoyed when Adam is stimming, a common autistic repetitive behavior that surfaces as jumping for Adam. That’s why she bought the trampoline and placed it in the middle of the family room. Adam can jump while still in the midst of family’s activities.

    Adam attends a pre-kindergarten class for half a day at the local charter school. The class has two teachers for 10 children. Adam gets 45-minutes of speech therapy a week but that is not enough to increase his 300-word vocabulary. The five-year-old can get frustrated when he does not have the words to express his needs.

    When they moved to Florida, Adam who had been toilet trained, regressed and is back in diapers. Betsy Peterson is not sure if the move caused the setback or it was due to a change in diet. Tests have shown that Adam is sensitive to glutens and was placed on a gluten-free diet. The diet is hard to enforce when the other boys eat normally.

    While his mother talks, the child takes two loaves of Wonder Bread and throws them on the family room rug. He plunks down in the middle and eats the middle out of several pieces.

    “At least he’s eating,” his mother said.

    Betsy Peterson is not fazed by Adam’s erratic behavior. Having six boys in eight year may have led to her calm nature. She said that Adam is her “angel” and spends a large portion of her day watching his every move. He cannot be left alone or he will spread feces or soap on the walls of their new home.

    The 38-year-old spends hours on the Internet researching autism after the children are in bed. The family has spent thousands of dollars on therapy, special diets and vitamins for Adam. Her hope is that someday scientists will find a cure.

Aggie's Friends

    They call her Aggie, short for Agnes. She is a caregiver, companion, chief cook, chauffeur and most of all a friend to nine clients who have mental and physical disabilities.

    Agnes Freeman has spent most of her adult life working with the special needs population. She drove a bus for Seminole County Public Schools for 35 years, the last 25 of those transporting the disabled to work at Seminole Work Opportunity Program (SWOP) in Casselberry.

    The clients became her extended family and after she was forced to retire from the school system she knew her future was in providing care to those she grew to love. Freeman, 59, became certified as a Med-Waiver companion and her schedule filled with clients who needed help with doctor’s appointments, trips to the grocery, fixing meals and doing laundry.

    Two years ago, one of her clients asked Freeman to teach her to cook. Ada Allen, 47, is autistic and loves to stir, whisk or blend any concoction. Freeman started the weekly cooking class with just Allen and a friend and it has grown to be a twice a week event that includes up to eight people with disabilities. Each takes a turn measuring, stirring and preparing the ingredients for a full home cooked meal.

    Another client has cerebral palsy and is confined to a wheelchair. Both her parents have died and the 48-year-old woman lives with a sister who only cooks microwave meals. Patty reads the directions and makes sure the recipe is followed correctly.

    Tracey Davison, a certified nursing assistant who looks after six clients on different days each week, brought Ester Benitez, who has Down’s syndrome. She said the cooking class provides an educational opportunity and social outlet for her clients, who often meet for movies or bowling.

    “Aggie is a real good cook and I learn recipes from her that I cook for my three kids,” Davison said.

    The caregivers and clients gather on the screened back porch of Freeman’s Sanford church, which donates paper products and the use of their kitchen. Each client brings a crumpled dollar bill to help pay for groceries but the money rarely covers the full cost of the meal.

    “If I lose a little bit of money, I don’t mind, because they have so much fun,” Freeman said.

    When she first started the cooking class, she would take leftovers home to her husband. Now that the classes have become popular, she said she stops at Burger King on the way home for his meal since there are rarely any leftovers.

    Freeman spends about two hours chopping vegetables at home before each class. Her students take turns adding the vegetables to a macaroni salad, some spread butter, garlic and herbs on rolls, while others set the table. They grind Oreo cookies and mix it with Cool Whip to layer in a chocolate pudding. Those that don’t like chocolate are offered fresh cut strawberries and cream as an alternate desert.

    The grandmother who has raised her own three children said she enjoys the classes because she can share her love of cooking. Whenever one of the participants has a birthday, she brings their favorite cake with balloons and banners to celebrate the occasion.

    “This is the best job in the world,” Freeman said. “I get so much satisfaction out and they give back so much love.”

The Boatwrights Battle ALS

    
    George Boatwright was raised on a farm in West Virginia and learned independence early in life.

    “In the country, you learn to do for yourself,” said Boatwright, an 83-year-old who lives on a five-acre farm in McAlpin, a small town in North Florida. The retired toolmaker has spent the last five years caring for his wife, Mollie, who suffers from ALS more commonly known as Lou Gehrig’s disease.

    The couple lives miles from a major city in a trailer hidden from the dirt road by towering pines and mature oaks. A Hospice worker comes daily to bathe Mollie but there are few visitors and the days are long for George, who gets up around the clock to care for his ailing wife of 52 years.

    He said he sleeps in spurts like Thomas Edison.

    “I’m just barely hanging in there,” said George. “If I were younger, I could do it.”

    The couple’s four children all have families of their own and live in Wisconsin, Alabama, New York and South Korea. They visit but cannot give George the break he so desperately needs.

    The lack of social services in rural Suwannee County means the Boatwrights do not receive the type of respite care they could get in a big city. Yet, financial restraints mean they are stuck in the retirement home they purchased a decade ago.

    It is tough on George but even tougher on his wife.

    Mollie’s health is deteriorating and she is able to get up out of bed only a few hours a day. The debilitating disease has stolen her voice and she only has use of her right hand. She sits in a motorized wheelchair and uses a dry erase board and red marker to communicate.

    Her mind is sharp, while her body is nearly useless.

    Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. ALS causes the patient to lose muscle control and in the later stages become paralyzed and eventually die. Yet, for the vast majority of people, their minds remain unaffected.

    Before ALS took the use of Mollie’s arms and legs, she wrote a book for her five grandchildren, called “The Dreamin’ Tree.” She is working on a second book and hopes to finish it before the disease takes her life.

    Doctors say she only has a few months left before the disease steals her ability to breathe. George hopes his health prevails so he can continue to care for Mollie. The couple tried a nursing home for a year but George said his wife cried everyday. The 40-mile daily drive was tough on George and he decided to bring her home last December.

    “She cried the whole way home,” he said.

    Yet, the daily demands of caretaking have taken their toll. George is always tired and never has time for himself. He would like to take a break from changing diapers and fixing meals but knows that there is no one available.

    “I just wish she would be healed,” he said.

    He sits at the kitchen table and reminisces about the girl he married.

    “She played basketball, loved to hike and could climb the Catskills faster than me,” George said.

    Now, his 72-year-old wife needs help to move, bathe and eat. Each meal takes about 40 minutes because her ability to swallow is dwindling.

    Mollie can only moan when her husband describes her once active lifestyle. She said she never thought she would be the dependent one, since she is 10 years younger than her husband.

    She points to the jars on the kitchen counter. The Jars of Joy were cookie recipes she made in mason jars and sold at local stores. It was her retirement business after she moved to Florida and left her bookkeeping job.

    She sold more than 1,000 Jars of Joy before she was diagnosed. The colorful jars sit piled on the Formica counter gathering dust. They are a grim reminder of the independence she once had.

Georgette Misses Socializing

    Soap Operas are Georgette Rott’s life.

    The 50-year-old was born mentally challenged and cannot read, write or tell time. Yet, she knows that lunchtime is after “All My Children.” Her afternoon is filled by watching “One Life to Live” followed by “General Hospital.”

    “She thinks the Soap Operas are real,” said her sister, LuAnne Tonioli, 53. “She lives through their experiences. One day, she was upset because one of her favorite characters died.”

    Rott spends much of her life sprawled on her trundle bed or confined to a wheelchair. She’s very social but her rapid-fire speech is difficult for anyone but family members to understand.

    The petite woman weighs just 78 pounds and her skinny legs can no longer move. She walked until the age of 16 when she was hospitalized with stomach problems. A drug overdose put her in a five-month coma and doctors told her mother to let her die in a nursing home.

    Her mother never gave up and Rott emerged from the coma with her legs stuck in the fetal position. Hospital bills caused the family to lose their home in Cherry Hill, N.J. after Rott’s father died from multiple sclerosis. Mother and daughter lived in an apartment on the pair’s social security benefits.

    Eight years ago, Rott’s mother died and no one had made plans for Georgette’s future. She moved in with her older sister and her husband in New Jersey. Five years later the Toniolis decided to retire to Florida so they could be near their three grown children. But the move meant that Rott’s state benefits ended and she was placed with 10,000 others on a waiting list for Med-Waiver benefits in Florida.

    Rott receives $600 a month in social security benefits and the check pays for three days a week to the Abilities Resource Center (ARC) in Vero Beach, where she socializes and takes part in a work program designed for the developmentally disabled.

    Georgette looks forward to the days she spends at ARC because she gets out of the house, her sister said. Yet the couple does not have the funds to pay the $47 a day fee five days a week.

    LuAnne Tonioli travels 36 weeks out of the year with her job planning meetings for pharmaceutical companies. Her husband is a retired truck driver who fixed and resold houses until the market slowed down. Now he is left in charge of his wife’s sister.

    “My husband and I love her (Georgette) but we’re getting tired and are starting to fight a lot due to the stress,” said LuAnne, who added that family members do not help as much as they had hoped.

    The couple, who have been married 30 years, talks about divorce or separation but if one left, there would be no one to care for Georgette. They have health problems of their own and worry about the future.

    The couple had planned a trip to the Grand Canyon this summer and paid $1,400 so Georgette could spend two weeks at Camp Challenge in Sorrento. But after their plane tickets were purchased, the camp’s staff walked out and the Toniolis were left with no place to leave Georgette. They had to pay a caregiver $25 a day just so they could go on their first vacation in years.

    The Tonioli’s were told five years ago that Georgette was one of 5,000 waiting for state benefits, now she is one of 10,000. They have emailed congressmen, social service agencies and health care providers but cannot find any respite from the 24-hour a day care Georgette needs.

    “Some days, I just break down and cry,” Tonioli said. “There just seems to be so little hope and so much frustration.”

A Sister's Challenge

    Jeanne Ellis always knew she would ultimately care for her mentally disabled sister later in life. Yet, she had no idea how demanding the job would be when she became the caregiver for both her mother and sister.

    Her retirement years are filled with round the clock care for her 97-year-old mother and 77-year-old sister. Meanwhile, Jeanne and her husband, Peyton, have been battling their own health issues. She was diagnosed with an aggressive form of breast cancer in 2005, while her husband is recovering from a stroke.

    “You do what you need to do,” said Jeanne, 62.

    She said it has been difficult watching her self-reliant mother give up her independence. Ruth Johnson grew up during the Depression. She and her husband built and ran a successful hotel and restaurant in Clinton, Pa. before retiring to Golden Gate, a small city near Naples, Florida. She drove until the age of 93.

    Since her husband’s death in 1976, Ruth had been the sole caregiver for her oldest daughter, Florence, who was born with the umbilical cord wrapped around her neck. The lack of oxygen caused brain damage and Florence functions on the level of a 10-year-old.

    As Ruth Johnson aged, her health started to decline and she showed signs of dementia. Jeanne and Peyton were living in Charlotte, N.C. at the time but became aware of developing problems through frequent visits and from Ruth’s friends and minister. The house was not clean and her mother had gotten into debt and was not paying the bills. Management of medicines became difficult and confusing.

    “We knew at some point, they would not be able to live on their own,” Jeanne said. “But my mother was always such a strong, self-sufficient woman and didn’t want anyone telling her what to do. She was resistant to change and wanted to stay in her own home.”

    The Ellis family moved to Orlando and bought a house with a split bedroom plan so Ruth and Florence could move in with them. Then Jeanne was diagnosed with breast cancer and the move was delayed. After she finished major chemotherapy and radiation treatments in 2005, they moved the women to their Orlando home. The couple continued to make trips to Golden Gate to complete repairs and market the house, which was sold in 2007.

    Shortly after the move, Peyton suffered a stroke while they were in Golden Gate repairing the home. Luckily, he had no long-term medical effects. However they did need to deal with an increase in medical monitoring and medical expenses. They had planned to celebrate their 30th anniversary in England but have delayed the trip because of their caregiving responsibilities.

    Ruth Johnson is hard of hearing, has diabetes, hypertension and macular degeneration. She spends much of her day sleeping and often asks “why doesn’t God take me?” her daughter said. Florence also has diabetes and hypertension and takes thyroid medication.

    The only break Jeanne receives is the three days a week Ruth and Florence attend Share the Care, an adult day care center in Orlando. Florence, who is very social, looks forward to attending the center and participating in the activities, her sister said.

    Jeanne said they “have good days and bad days.” She credits her husband with helping her cope during the tough times.

    “I’m very blessed to have married a man that is so supportive of our situation, she said.

    Jeanne has learned to navigate the healthcare bureaucracy, find social services and rearrange her life around the needs of her sister and mother. She is part of a growing population that is providing full-time care for relatives. A recent study by the National Alliance for Caregiving and AARP found that 44.4 million Americans age 18 or older are providing unpaid care to an adult.

The Johnston Family

    Edda and Larry Johnston haven’t been out to dinner, to a movie or on a date for more than a year. The Orlando couple doesn’t feel safe leaving their two sons with a babysitter and family members are busy with their own lives.

    Joshua, 5, has autism and his brother Jacob, nearly 3, is nonverbal.

    It is not easy finding a babysitter for the pair. Even if they did, the $8 to $10 an hour fee would be more than the couple could afford.

    Larry Johnston quit his real estate job to stay home with the boys while his wife works as a physical therapist assistant. Insurance coverage is more affordable for the couple with Edda working for a company rather than paying for family coverage under Larry as an independent contractor. They live on one income and do not have money for extras. Especially since both boys need speech therapies that insurance does not cover.

    “Our lives have been turned upside down,” said Larry Johnston. “I went from making $80,000 a year to zero.”

    The 51-year-old father said he felt it was important to stay home with the boys after Joshua was diagnosed with autism at 2 ½ years old. Both parents said they noticed that Joshua’s speech was not developing as fast as other babies at about 16 months of age. Joshua’s former pediatrician at that time stated “boys develop their speech slower.” It took nearly a year before a pediatric neurologist could give them the diagnosis they feared.

    It was Edda’s mother and sister, both nurses, who told her something, was not right with Joshua. Since he was Edda’s first child, she was loath to agree that her quiet baby was autistic.

    “He was such a good baby,” Edda Johnston said. “We were concerned when he didn’t talk but thought he would develop that skill later.”

    Autism Spectrum Disorders can usually be diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months. Parents are the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills.

    Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct. Parents should request screening for autism at the first signs of developmental delays.

    Research indicates that early intervention in an appropriate educational setting for at least two years during the preschool years can result in significant improvements for many young children with autism.

    Joshua still has hardly any words and his younger brother is speech delayed. The parents said they are concerned about Jacob, who is a year behind his peers in language development. They said he often mimics his brother’s tantrums and flapping his arms for attention. Yet, they said they do not believe Jacob is autistic.

    “The odds of having two autistic children are just too high,” Edda said.

    So the Orlando parents deny themselves luxuries like a babysitter and spend money on speech therapists. They haven’t taken a vacation alone together since before Joshua was born.

    Joshua attends Princeton House, an Orlando charter school that caters to autistic children. He receives 90 minutes of speech therapy and group occupational therapy at school each week but that is not enough, according to his parents.

    Since Joshua was diagnosed late, government money paid only for seven months of speech and behavioral therapy as Part C Medicaid benefit for any child before three years of age. Now the Johnstons pay out of pocket for any speech, behavioral and occupational therapy classes beyond what Joshua’s school offers.

    “We feel like our child is being neglected by the government and the insurance industry,” Larry Johnston said. “It is an overall pathetic situation but I’m an eternal optimist and believe that he will talk one day.”

    The dreams that the Johnstons had for their son have been shattered.

    “He will probably never marry, have children or a career,” said Edda Johnston as she wiped tears with a Kleenex. “Once you get the diagnosis (autism), you have to give up on those dreams.”

    Basic steps or milestones are now dreams they desire for Joshua. One hope she clings to is for Joshua to say, “I love you” with meaning and not just repeating the words.

Clara and Her Cousin

    Two independent women living under one roof can best be described as constant challenge.

    There’s a tug of wills going on at the Orlando home of Clara Adams. The 59-year-old retired systems analyst and computer programmer left her job at Lockheed-Martin Corporation and two years later became a full-time caregiver to her second cousin, Matilda Hamiter, 96.

    Both women like things done a certain way and are not afraid to voice their opinions. Hamiter outlived her husband who died in 2001 and did not want to leave her Cleveland home. She had spent 28 years working for General Motors creating machine-made labels.

    Hamiter, who never had children, is Adams’ grandfather’s niece and the pair met in 1969 but kept in touch through phone calls and visits. They agreed years ago that Adams would be Hamiter’s caregiver. But when Adams came to check on her well-being each year there were rules to follow.

    “It was very uncomfortable,” said Adams, the divorced mother of a grown son. “She wanted things her way. She told me when the TV could be on and if the phone could be answered.”

    Adams respected her desire to be in charge. But when a doctor discovered that Hamiter was not taking her medications and eating properly, the decision was made in 2003 for Hamiter to move to Adams’ home.

    Now Adams is in charge.

    “She’s still rebelling,” Adams said.

    “I just wanted to keep trying to do for myself,” said Hamiter.

    Hamiter is still mobile and can feed, bathe and clothe herself. She is taking medications for heart, kidney and memory problems. The petite woman wants to wear the same long sleeved white blouse during the humid summer. Adams worries she will be too hot. Hamiter still clings to her independence and wants to wear whatever she pleases.

    “She can get aggressive and argumentative,” said Adams, who said her strong Christian faith has helped her through the tough times.

    Adams tried putting Hamiter in an assisted living facility but it lasted only 30 days. One day she visited and found Hamiter hiding in a closet.

    “I figured her mind would be gone, if I left her there,” Adams said. “It was double the work going there to visit everyday. I want to keep her home as long as we’re able.”

    The pair often visits friends where they play Spades, Hearts and Gin Rummy. Both women are fiercely competitive.

    “She cheats,” said Hamiter about her caregiver. “She always has to win.”

    Adams accuses her cousin of being a sore looser.

    Five days a week, Hamiter goes to Share the Care’s Adult Center in Windermere, where activities and a roomful of seniors keep her social. She is one of five 96-year-olds in the program where the ages range from 56 to 97. She is an enthusiastic participant in the chair exercises and says she enjoys the opportunity to get dressed and out of the house.

    Hamiter said she often feels like a burden.

    “She’s (Adams) living her life and mine too,” she said.

    Adams had dreams of traveling the world after her retirement. A friend has offered to stay with Hamiter for a month so Adams can spend some much-needed vacation time in Hawaii.

    Hamiter admits it will be a break for both of them.

For Pete’s Sake

    Lisa and Robert Midden were married just six months when they became family caregivers and 13 years later the couple is still caring for an elderly parent, waking multiple times each night and navigating through the confusing bureaucracy of the health care system.

    Lisa was 27 and Robert was 35 when their newlywed year was interrupted to take care of Lisa’s mother after her husband of 40 years could no longer care for her. The robust patriarch of the family needed back surgery and the pair moved into their home.

    Five years later, Zoila Pereira died and her husband, Pete Pereira, started developing the early signs of vascular dementia at 80. He got lost on his way to the grocery store and ended up at a Handy Way in North Florida trying to trade his watch for directions home. He nearly burned down the house when he left a pot on the stove but luckily neighbors noticed the smoke.

    A native of Portugal, Pete Pereira was a Merchant Marine, gourmet cook and barber who traveled the world and was fluent in seven languages. Fiercely independent, he did not want to sell his home, give up his car keys or move into his only daughter’s home.

    “It was like a tug of war,” said Lisa Midden, 40. “He was such a strong and proud man and would never admit he was lost or needed help.”

    Lisa’s husband hid the car keys and unplugged the wires so Pete could not drive. He even took the octogenarian to the driver’s license office after police revoked his license in an attempt for someone else to tell Pete his driving days were over. The couple had to remove the classified ads from the paper so the idea of shopping for a new car would not surface.

    One day, Pete asked his daughter, “What did I do that you would take away my life?” Lisa said she wanted to reply that she had given up her life for him but knew he would not understand.

    Robert Midden left a job in computer software development and both work as actors now juggling their schedules so Pete can receive round the clock care. They have moved out of the master bedroom to a room beside Pete’s so they can get up when motion sensors signal that Pete is roaming. They receive breaks when Pete attends Adult Care at Share the Care’s Windermere location and respite care from Granny Nannies.

    But 13 years of caregiving has taken a toll on the couple and their finances.

    They said their income has dropped by 90 percent so they could abide by Pete’s desire not to live in a nursing home. They have been called out of auditions and commercials to pick up Pete at adult care. At a time in their lives when the Middens should be saving for their own retirement, they are trying to negotiate complicated Medicare restrictions for the elderly.

    “We are the strongest nation in the world, yet treat our elderly like they are a bother,” said Robert Midden, 47.

    The couple said they get odd looks from strangers when they go to the grocery and let Pete sit in a bench-style cart. They rarely take him to dinner at a restaurant anymore because they don’t want someone to call 911 if he has a seizure because he would end up in a hospital rather than being cared for at home. Hospice has supplied all the necessary hospital equipment to care for Pete at home. The Middens are firm believers in using drugs only when needed and they want Pete to die in the comfort of their home.

    Hospice workers visit because Pete has had more than 70 transient ischemic attacks sometimes called mini strokes during the past year. The seizures that cut off oxygen to the brain are getting worse and the after effects are robbing Pete of the stories he once told.

    Now the tales of traveling the world come out in a mixture of his seven languages. He is cognizant for a few minutes then plays with a child’s stuffed animal until his attention wanes.

    “He was one of those people who never met a stranger,” said his daughter who dresses him in khaki pants, matching shirt and socks along with a plaid hat that covers his bald head.

    It is tough for Lisa to watch her father’s decline but she proudly proclaims they are survivors and will keep Pete as comfortable as they are able in his last days. She wants to follow the family motto to “live while we’re living.”

Mother and Daughter Bond Over Alzheimer's

    The two women named Mary sit nightly at the dining room table filling out crossword puzzles.

    Mary, the mother, was once a crossword whiz who tackled the New York Times puzzle daily. Most nights, she now needs her daughter, Mary, to give her hints for even the easiest answers.

    The words are still there. They just take a bit of prompting.

    Mary Scott describes her caretaking as a mission. She retired six years ago from her human relations job at the Orlando Sentinel to care for her mother, Mary Asenjo. After her husband died, Asenjo moved from St. Petersburg just blocks away from her daughter’s Orlando home.

    But the younger Mary kept getting panicked calls from her mother at work and knew she could no longer live alone. The retired secretary was fiercely independent and an active volunteer. But she misplaced her car keys and could not get home without help one day.

    “It was one of many signs that she was headed down the path,” Mary Scott said. “I didn’t want to look back and wish I had spent more time with her.”

    She moved her mother into the home she shares with her husband. During the first few months, she slept on a coach outside her mother’s room so she could comfort her if she awoke in a strange place.

    Asenjo was diagnosed with Alzheimer’s disease, which affects more than five million Americans. The progressive brain disorder gradually destroys a person’s memory and ability to learn, reason, communicate and carry out daily activities. There are a range of behaviors that may include personality and behavior changes, such as anxiety, suspiciousness, agitation, delusions or hallucinations. 

    There is no cure.

    Scott has become an expert on the disease that has robbed her mother of so many memories. She educated herself and joined support groups at the local Alzheimer’s Association. She now serves as a facilitator for caregivers and is the one called by church members for help when someone is diagnosed with the disease.

    Hallucinations during the day make Asenjo believe there are other people in the room. Scott knows what triggers the fear in her mother and can turn off a frantic television program or comfort her mother before an episode occurs. She believes that her mother would be “freaked out” in a nursing home by shift changes and the influx of visitors.

    The mother that had raised three children has no memory of that role but seems to live in the adolescent stage of her life.

    “She recognizes me as a daughter but also views me as a sister or cousin,” Scott said. “Sometimes she talks to me about me. When I talk about daddy, she thinks of her father, not mine.”

    Scott started her own business from home called Positive Outcomes to help people improve their work lives and is getting certified to become a professional coach. Her mother attends an adult day care center called Day Break in Winter Park five days a week.

   For the New Year, Scott made a resolution to hire a respite care provider so she and her husband can go out for a weekly date. She said she is lucky that her brother and sister, who live out of state, often provide a break so they can go on vacation. She also credits the support system she has found through the Alzheimer’s Association for her positive attitude.

    “Through this disease, I have met so many wonderful people and made connections that will last a lifetime,” Scott said. “It has taught me patience, tolerance and the ability to provide loving care to my mother. People who do not have that support become bitter, depressed and short-tempered.”

    Scott surmises that she has it better than caregivers who have to watch their spouses live with Alzheimer’s. She said she always expected to care for her aging parents.

    “But I don’t have children and wonder who will do this for me,” she said.

Lost in Love

    There’s a cacophony a languages running through Sam Kaufman’s head. He tries passionately to join the conversation and make his point but the jumble of words is nonsensical.

    The 86-year-old stroke victim, who also exhibits signs of dementia, mixes the Polish of his youth with the Russian he learned while trying to escape the persecution of Jews during World War II. German surfaces when he thinks about the war and Hebrew and Yiddish are intertwined with the English he learned when he moved to the United States in 1958.

    His wife of 60 years, Tamara Kaufman nods occasionally to the chatter.

    She has put a motion sensor on the bathroom door so she can hear her husband get up in the night. Yet, there is no time for napping during the day because Sam cannot be left unattended. When Sam soils himself or opens a kitchen cabinet to urinate in, he gets angry when his wife tries to change his clothes.

    “This is my life,” she says.

    Stroke is the third leading cause of death in America and the number one cause of adult disability, according to the National Stroke Association.

    A stroke occurs when a blood clot blocks an artery or a blood vessel breaks, interrupting blood flow to an area of the brain. This causes brain cells to die and brain damage occurs. Some people recover completely from strokes, but more than two thirds of survivors will have some type of permanent disability.

    Sam no longer can read, enjoy a television show or talk about their future.

    Tamara, 78, misses the vibrant, hard-working carpenter and the center of their close-knit family. She has no one to talk to at night and few friends visit since the first of two strokes took Sam’s ability to communicate seven years ago. Her two children help but they are busy raising their own children.

    She has tried desperately to keep him at home. But Sam wanders. He cannot work keys or the locks on the doors but often bangs into the sliding glass doors that separate the living room from the back porch.

    “He paces the house like a caged animal sometimes,” his wife said. “It is difficult to watch.”

    One night Sam went for a walk and Tamara drove around their Williamsburg neighborhood to find him talking to an off-duty police officer who told her he was obligated to report her to social services.

    “He (the police officer) said I would go to jail, if I didn’t watch my husband,” Tamara said.

    A caseworker came to the house and suggested an adult day care center sponsored by Share the Care in Windermere. Sam went for nearly a year. Tamara baked a birthday cake and brought it to the center on the same day he was kicked out of the program after he got frustrated and pushed one of the caretakers when they wouldn’t let him go outside for a walk.

    Sometimes Tamara follows slowly in the car as Sam walks the neighborhood. A knee problem prevents her from walking with him. When Sam gets tired, he’ll get in the car and they drive home.

    Tamara hired a caretaker who comes for a few hours five days a week so she can get out of the house and run errands or just see a matinee. The $10 an hour is tough to afford but the little income they have left means they do not qualify for state or federally-funded respite care.

    Ironically, Sam can perfectly recite the Hebrew prayer when they visit their temple every Friday night. He has a few lucid moments but they are dwindling, according to his wife.

    “Mostly he just says he wants to go home,” said Tamara, who has endlessly tried to explain that he is home.