Caregivers struggle as Alzheimer\'s transforms their loved ones.
By Taylor Williams, Jackson Hole, Wyo.
August 22, 2012
The living room of Leslie Jorgensen’s basement in Alpine tells the story of how much her life has changed during the last five years.
Sheets stapled to the doorways create the impression of a fully enclosed space. Locks bar the door that opens into the backyard. The sound of a river meandering through the nearby mountains is barely audible, replaced by television static. A rocking chair faces the TV, which was moved from its stand to the floor so the chair’s primary occupant, Leslie’s sister, RoLene Whittaker, wouldn’t knock it down. Pictures on the wall and curtains on the windows are scarce for the same reason.
“She’ll hear noises, but she can’t really focus on the picture or the story,” Jorgensen said. “At first we had to tape up the buttons because she’d be pressing them so much we wouldn’t have a picture anymore.”
Whittaker was diagnosed with dementia of the Alzheimer’s variety at the age of 55. Now 61, she has reached the advanced stages of the disease. It has robbed her of her basic motor skills and made walking without assistance difficult. A woman who made hundreds of skydiving leaps in her younger years has involuntarily traded the freedom of the heavens for the confinement of a basement. She needs round-the-clock aid from her family and professional caregivers to get through the day.
But like many Alzheimer’s patients in the advanced phases, she has moments of awareness, flashes of verbal coherence.
When Jorgensen asks herself out loud if her husband is working outside, her sister answers, “I think so. It’s OK to go out.”
Jorgensen has been her sister’s primary caregiver for more than three years. And while she knows no two days are the same, she prepares for the unexpected. She knows she needs to keep the bathroom cabinets locked, to buy easy-to-swallow foods and to let someone else lift her sister when necessary.
Whittaker’s family began worrying about her in 2007 during her father’s funeral in Utah, where she served as the executor. She seemed distracted, and she struggled noticeably whenever she had to read something. Two years later, her ex-boyfriend ran into her in a Kmart, and she appeared lost and couldn’t find her car. She began falling behind on her bills, forgetting to pay them or signing her checks improperly. She sent $4,000 for a $400 car payment. Normally punctual and detail-oriented, Whittaker began showing up late for work and missing meetings. Her employers suspected drug use, and she was eventually let go.
By late 2008, Whittaker was eating as infrequently as once every three days. Her finances were a catastrophe. She had been jailed after an officer pulled her over and attributed her slow and aimless driving to being under the influence. It became clear her declining mental state had left her unable to take care of herself. She had been living in northern California, and obtaining full-time professional care was too expensive. So Jorgensen helped her move to Wyoming and took her in, an act of compassion that has drastically changed her life.
“It’s tough to put into words what you go through as a caretaker,” she said. “It takes so much time and effort, along with the pain and frustration of watching a loved one deteriorate. I’ve had to learn as I go, like a new mother has to learn to raise her child.”
In the early stages, Whittaker could still communicate and get around the house. But as her condition worsened, she became uncharacteristically combative and destructive. She took to dismantling furniture and ripping decorations off the wall. She suffered from insomnia and would roam the house at all hours. When she did sleep, it was rarely without tearing the bedclothes apart first.
Whittaker once followed her dog, Scully, down to the river and couldn’t find her way back. Unable to recall phone numbers, she dialed her sister’s husband using the voice-command feature on her cellphone. When he answered, she calmly explained she was in the river, and would he please come get her?
Becoming disoriented and experiencing mood swings are common symptoms of middle-stage Alzheimer’s. The family consulted medical professionals. But when Whittaker began taking medicine to mitigate those symptoms, she suffered a seizure, so they discontinued the drugs.
When her sister moved in, Jorgensen and her husband were working full time. They took frequent hunting and camping trips. Their five children and 10 grandchildren could visit as they pleased. But as the disease gradually consumed Whittaker, family outings and visits grew less feasible. There was always the danger of her wandering off or getting hurt if left unsupervised.
The difficulties of squaring Whittaker’s outstanding car payments, medical bills and mortgage to creditors in California fell directly on Jorgensen, who acknowledges that the stress may have affected her performance at work. She began to have to use her sick days to cover her sister’s various appointments. But she never complained. And though she no longer holds the full-time job she had in 2010, Jorgensen never faults her sister.
Jorgensen’s devotion is unwavering and her gratitude for the help of her husband and the professional caregivers from Access Home Care and Hospice, who arrive at 7:30 sharp every morning to feed, shower and provide some extra company. The daily struggles can be grueling, but they can also bring people together.
“I couldn’t do it without my husband,” Jorgensen said. “And the girls in the morning are great about helping me relax then and keep tabs on her health issues.”
Sandy Dillon, one of Whittaker’s professional caregivers, said the challenges of the job yield fulfillment in their own right.
“There’s satisfaction in knowing that you’re helping people shoulder the burden,” Dillon said. “It leaves you with serious compassion and empathy.”
Barbara Mallory’s kitchen is a model of order.
Cabinets and drawers are marked with thin strips of white paper, their contents labeled in large type. Foods along the counter and in the pantry are separated by group. Next to the bowl of bean salad and a non-alcoholic bottle of chardonnay is a detailed list of other items that have been prepared for lunch.
Mallory walks into the kitchen, smiling, laughing, welcoming guests into her home. As the party moves outside, the hostess glances at her watch and pushes a button. A monotone voice announces the time and date.
The labels ensure she can find what she needs quickly. The talking watch helps her associate morning, afternoon and evening with their typical activities. Both are weapons in Mallory’s fight against the cognitive lapses seen in the beginning stages of Alzheimer’s.
“Not being able to remember is frustrating, especially because I’ve always been good with names and details,” she said. “I’ve tried to figure out why God gave me this. Sometimes I just have to step away and say to myself, ‘You can remember this.’ And I usually remember it.”
Mallory is battling the disease with everything she has. Every day is a rigorous workout of mind and body. Her success in countering its advances are evinced by her quick wit and immaculate garden. She plays golf, participates in water aerobics class and takes long walks or hikes every day. She loves to pick wildflowers and is looking forward to strapping on her cross-country skis this winter. She and her husband, who has been a rock of support since Mallory’s diagnosis, enjoy an active social life. She just needs a little reintroduction sometimes.
But no matter where Mallory’s day takes her, Marylou Amendola is sure to be close by. Amendola is her shadow, shopping partner, outdoor companion, facilitator and friend. She began working with the Mallorys 10 months ago. She wasn’t hired to live with them, just to help with the logistics of moving to Jackson from Florida. She now lives with Patricia Gomez, the Mallorys’ cook and helper, in an upstairs suite in their house.
“I never expected my stay to be this long,” Amendola said. “I have a husband back in West Palm Beach. But you get so involved, leaving feels like walking away from your own family.”
Above all else, caregiving has given Amendola a renewed perception of what it means to be patient. The biggest challenge is recognizing the need for repetition — she keeps three calendars of daily events — and not asking questions that force Mallory to recall specific incidents. She has had to learn when and how to give Mallory her privacy while helping her with much of her daily routine.
Never one to be waited or doted on, Mallory shares a special bond with Amendola, driven by a mutual love of the outdoors and transcending any sort of employer-employee relationship.
“Sometimes it’s tough getting accustomed to having other people live with you,” Mallory said. “It’s like you all of a sudden you have a new sister you have to get along with. And you really have to work together. But when they’re extremely thoughtful and willing to help, it works.”
Whether they are relatives or professionals at the beginning, caregivers for people who have Alzheimer’s become family at the end.
They comprise a large group — more than 15 million people nationwide — bound by sacrifice and selflessness. Caregivers provide the people they look after one more reason to keep fighting, often just by showing up and talking.
Erin Crow has experienced this firsthand. The former activities director at River Rock Assisted Living, Crow is one of several caregivers for a Jackson man in his 70s who is battling Alzheimer’s. The man, a former Jenny Lake climbing ranger, loves going into Grand Teton National Park and identifying peaks his memory still clings to, and Crow takes him a couple times a month. Simple companionship, profound impact.
“Family members sometimes see what’s been lost in a person, but caretakers can see what’s left,” Crow said. “Caretaking is the most rewarding thing in my life. Everyone has their own techniques with it, but knowing your limitations is just as important.”
In 2011, caregivers provided more than 17 billion hours of unpaid services for the 5.4 million Americans suffering from the disease, according to the Alzheimer’s Association. Families administering aid at home constitute about 80 percent of the caregiver population.
Nearly a third of that group has reported symptoms of depression. More than half has reported high levels of emotional stress.
The toll Alzheimer’s exacts can be financial as well as psychological. In 2012, the total cost of providing care to those living with the disease is projected to exceed $200 billion. Based on industry numbers and the current minimum wage, the Alzheimer’s Association rated the economic value of unpaid hours of caregiving services at about $210 billion.
In Wyoming, the number of people 65 and older living with Alzheimer’s increased by 43 percent between 2000 and 2010. The association lists more than 10,000 cases throughout the state, with about half living in nursing homes or assisted-living residences.
Researchers have identified some common characteristics associated with the lapses in memory and other cognitive processes, most notably the accumulation of a protein-like substance called beta amyloid. When broken down inadequately, beta amyloid fragments form hardened “plaques” that become attached to nerve cells in the brain, gradually breaking down the tissue.
At the heart of Alzheimer’s research is the quest to determine what causes the brain to begin breaking down the substance improperly.
But the recent efforts of major pharmaceutical companies to develop drugs that either clear beta amyloid plaques or prevent their formation have come up short. While researchers generally agree that a link of some type exists between Alzheimer’s and beta amyloid buildup, it hasn’t been labeled the definitive root of the problem.
Alzheimer’s is an epidemic. It’s the sixth-leading cause of death in America. It’s an ailment that turns cognition into confusion and loved ones into strangers. But it’s not something that should be fought alone.