Caring for Alzheimer’s: How Three Couples Cope

Caring for Alzheimer’s: How Three Couples Cope

Caregivers talk about the physical and emotional toll as the disease progresses.

By Sumathi Reddy in the Wall Street Journal

Philadelphia

“Have you childproofed the house yet? Take all the knobs off the stove.”

The advice wasn’t from a nervous new parent, but from Bill Clinton, a 74-year-old who takes care of his wife who has Alzheimer’s disease. Mr. Clinton was sitting at a table at the University of Pennsylvania’s Penn Memory Center with a dozen other caregivers, who met to talk about the disease robbing them of the people they love most.

Some 5.3 million Americans have Alzheimer’s, a number that is expected to grow steadily, according to the Alzheimer’s Association. Some 15 million relatives and friends help with the patients’ care. Primary caregivers change diapers and feed and bathe their husbands and wives, mothers and fathers. They juggle jobs and other family responsibilities, and deal with often exorbitant expenses and difficult end-of-life decisions.

The caregivers meet monthly. They trade stories about their loved ones’ setbacks and their fears, and share practical tips and some humorous moments.

 “How many of you are taking antidepressants?” Tony Iero, 60, asked the group. A nervous laughter fills the room and several people raise their hands. “I was just wondering if I was alone in that.”

According to the Alzheimer’s Association, about 40% of caregivers for dementia suffer from depression. Caring for a dementia patient is typically “the most negatively impactful and the most challenging type of caregiving,” said Richard Schulz, a psychiatry professor at the University of Pittsburgh. “The symptoms are constantly in front of you. That takes a big toll.”

Corrine Sylvia and Donald Nye

Don Nye, who is out for a walk, seems unsure of where he’s going. Spruce Street, he just needs to find Spruce Street.

The 68-year-old first tries a different route to avoid construction but quickly switches to his regular one. He is just a few blocks from his co-op apartment in Philadelphia’s Center City.

“I try to stay on one route so I don’t get frazzled,” he says.

Mr. Nye was officially diagnosed with Alzheimer’s in the fall, six years after his doctor told him he had mild cognitive impairment, often a precursor to Alzheimer’s.

A former scientist in the pesticide industry, Mr. Nye stopped working and driving several years ago. Reading books has become difficult. His long-term memory is good; it is the short term that is increasingly fuzzy. Ask him his age, he’ll pause and say what year he was born instead.

Mr. Nye can still bathe and dress himself and microwave his breakfast. He spends his time doing jigsaw puzzles on his iPad and listening to his jazz records. He’s aware of what’s happening to his mind.

“Right now he’s pretty self-sufficient,” says Corrine Sylvia, his wife of 34 years. “But sometimes he gets confused about where he is. I have to be careful about when he goes out alone.”

Ms. Sylvia, who runs a nonprofit consulting business from home, got Mr. Nye a MedicAlert necklace from the Alzheimer’s Association a few months ago. It lists his name and a number people can call in case he gets lost or confused.

She worries, constantly. About what he ate for lunch when she isn’t there. About her managing their finances. About what comes next.

Mr. Nye’s mother, over 100 years old, has suffered from Alzheimer’s for years. He and Ms. Sylvia have talked about going somewhere where it is legal to end his life when he reaches a later stage. “I don’t want to be like Mom,” he says.

“This is not what we planned. In our 60s we planned to plan to travel and enjoy ourselves,” says Ms. Sylvia, who is 65.

Growing up, the couple went to the same church in a small town in Massachusetts. They attended junior prom together but went their separate ways for college. They reunited when she was 30; he, 33. Mr. Nye can still remember important things—his work, even his first date with Ms. Sylvia.

She is happy he still remembers, aware that sometime soon those memories, too, will slip.

Bill Clinton and Dorothy Clinton

“My wife has Alzheimer’s please be patient,” reads the little white card Bill Clinton keeps in his wallet to show people.

His wife, known as Dot, is 69. She can still walk around but often doesn’t make sense when she talks. Her personality, once vibrant and caring, has changed. “She can get verbally a little abusive sometimes but you know it’s not her,” says Mr. Clinton. “It’s the disease. We try to laugh about it.”

Mrs. Clinton recognizes her three children and husband and shows occasional signs of affection. “She still tells me she loves me,” says Mr. Clinton, a retired telecommunications manager. The couple’s 48th anniversary is in May. In his wallet he still keeps the faded coat tag that he had laminated and saved from the first time they met, her name and number long faded with age.

Mrs. Clinton showed signs of memory loss in her early 60s. “She was sick and we weren’t allowed to talk about it,” says Dorothy Clinton, the couple’s daughter, who comes a day a week to her parents’ home in Meadowbrook, Pa., to take care of her mother.

Mrs. Clinton used to bike ride for miles and go dancing with her daughter during summers at their Jersey shore home. She was an avid shopper and crafter and was active in church and the children’s schools. “Everyone knew my mom,” says her daughter. “She was the fun mom.”

Now, Mrs. Clinton goes to an adult day care most days. One of her sons moved back home in October to help out.

After prodding from the children to take a vacation, Mr. Clinton this week is going on his first trip without his wife, two weeks in China. He is putting Mrs. Clinton in a facility for Alzheimer’s patients. If she handles it well, he will consider eventually putting her there permanently.

“At my age, I’m not going to be able to take care of her forever,” he says. “You know what’s going to happen, it doesn’t make it easier, but you know it’s going to happen.”

Tony Iero and Paul Myers

Tony Iero strolls through the doors of Spring Village at Floral Vale, a residential facility for dementia patients in Yardley, Pa., bearings bags of Trader Joe’s groceries.

“Hello, hello,” the 60-year-old calls out to the residents seated nearby. “Hi, Paul!” he exclaims, stooping down to kiss one man and give him his favorite, a cup of raspberry ice tea. Paul Myers, whose 71-year-old hands are trembling, smiles in recognition.

Mr. Iero admitted his partner of 34 years to the facility in 2013. He visits Mr. Myers at least three times a week and cooks him a three-course meal in the cafeteria kitchen. They linger at a table in the lobby for hours.

Mr. Iero tucks a yellow napkin into Mr. Myers’s shirt and helps feed him forkfuls of salad and pasta. Mr. Myers can’t communicate beyond an occasional mumble and Mr. Iero fills the gaps with constant encouragement.

Mr. Myers, who used to work in the airline industry, looks at the stack of aviation magazines the staff gave him. “Airplane,” he says.

“You want to go on an airplane? OK, we can go. Buckle up!” says Mr. Iero. “Where do you want to go? We can go to Amsterdam, Florida,” he says, rattling off the names of some places they used to travel to.

Mr. Myers was diagnosed with Alzheimer’s in 2011 but started showing symptoms years earlier. “I thought it was Alzheimer’s but I didn’t want to believe it,” says Mr. Iero. He started going to work with Mr. Iero, who works in the information-technology department of a hospital, and eventually became registered as a volunteer.

“It was a way of me watching him,” said Mr. Iero. “It became a 24-7 job for me and it was very, very stressful.”

Placing him in the facility was difficult, Mr. Iero says. The residence is bright and airy with cheery staff. Mr. Iero says he pays $7,100 a month, which is eating up his retirement money. “As much as it was a relief to have him go somewhere I realize he’s never coming home again and it upsets me every day,” he says. In June Mr. Iero had prostate surgery. “I don’t have him to help me,” Mr. Iero says.

After dinner, Mr. Iero washes Mr. Myers’s face and hands with a hot washcloth in his room and trims his mustache and eyebrows. As Mr. Iero leads Mr. Myers down the hallway to the lobby for dessert, a female resident grabs Mr. Myers’s hand. The trio slowly shuffles along.

“Do we know who she is?” Mr. Myers mumbles.

“Yeah, we know who she is, Paul,” Mr. Iero says reassuringly.

His days are long. Prepping food in the morning for Mr. Myers. Grocery shopping after work. The 30-minute drive home in the dark.

“It’s just a horrible, horrible disease,” Mr. Iero says. When someone dies, “you lose that someone but then you go on. You have some closure. With Alzheimer’s it’s just an ongoing reminder of what you lost.”

Corrections & Amplifications

Paul Myers lives at Spring Village at Floral Vale, a residential facility for dementia patients in Yardley, Pa. An earlier version of this article incorrectly spelled the name as Spring Village at Floral Ville. (March 30, 2015)