A Long Goodbye

Boomers Seek Solutions for Alzheimer’s-Stricken Parents

The last thing Chi Scates wanted to do was walk into her father’s bedroom. After the surgeries, he’d struggled to recover at his modest Phoenix home, and now she had to tell him the family’s rottweiler had succumbed to cancer. “He looks at me, and he can’t get his breath,” Chi remembers. “Mom is walking behind me, smoking a cigarette, asking me to take her to the store – not even a tear, and they’d had this dog for 10 years. Right then, I knew: Dementia.”

Throughout his hospitalization, Chi’s father repeatedly said dying wasn’t an option because he had to take care of her mother. She hadn’t really understood what he meant. Then she inherited the job.

You can ignore the statistics, cross your fingers and hang a rabbit’s foot from your family tree, but if you’re a baby boomer, an apocalyptic horse called Alzheimer’s disease is statistically galloping ever closer, with your elders strapped to its fearsome back.

Those younger than 65 don’t have to worry just yet about developing the debilitating disease, though 10 percent of Alzheimer’s cases are classified as early onset. It’s mom and dad’s minds that are slipping away. In turn, as adult children we exchange our outdated Neverland tickets for caregiver roles, and it’s all aboard for the journey known as the “long goodbye.”

Some handle the trip better than others. Just about everyone who’s been there has sage wisdom to share. Their advice is this: Don’t wait to talk about risks with your parents; don’t ignore the signs; don’t delay a diagnosis; and don’t forgo the help of others. If they have a common regret, it’s that they didn’t call the Alzheimer’s Organization immediately for guidance.

Sounds simple. It’s not.

No Place Like Home

Sandy Eastman’s mother lived alone in a North Phoenix mobile home after her husband passed away. Initially, signs of memory lapse were written off as the luxury of old age, but Sandy became apprehensive after her mother forgot how to use the microwave and then got lost returning from the mailbox.

“She probably started to show signs when she was 79; now she’s 87,” Sandy says. “She was pretty good at schmoozing – you know, she would come up with the right answers – so my sister and I let it go longer than we should have. There comes a moment when you know that something has to be done. She made us promise to never put her in a home. It almost killed us, but we eventually did,” says Sandy.

The “home” question haunts many children of parents with Alzheimer’s. Nobody likes to consider themselves capable of packing off the people who raised them from birth to live with strangers in a facility. Cost is another factor. The average monthly cost of a unit in an assisted-living facility is $3,000 per month. If family members handling the care themselves need a break or interim care, they can expect to pay $20 an hour for a home-health worker.

One shocking fact is that the quality of life often blossoms for Alzheimer’s patients when guided by gifted caregivers in a social environment.

Chi, 49, doesn’t know whether to laugh or cry about all the cart wheeling they went through to make her mother happy at home. “She refused to go to the adult daycare center. It was her family, and that was it,” Chi says. “The only thing she was doing [at her house] in the last year and a half was sitting in that little room, smoking and watching the Game Show Network.”

Though her mother wasn’t violent, she was argumentative, repeatedly demanding to be given the car keys, to be taken to the store, asking the same questions and telling the same stories day after day.

“We were dying here. She was draining us,” says Chi, who had left home at 16 and wasn’t close to her mother. “She had no quality of life. I realize it’s a disease, and she probably won’t remember any of us soon, but I still would like for her to enjoy what time she has left. That was bothering me more than anything else.”

A lot of families draw a line in the sand about when they’ll start looking for placement. “The big three that research shows are falls, incontinence and behavioral problems,” says Deborah Schaus, executive director of the Desert Southwest Chapter Alzheimer’s Organization. “Happy demented people don’t get placed. It’s when people say, ‘I can’t take care of mom anymore.’”

Chi’s mother was dropping cigarettes around the house and answering the door to strangers. Fellow Alzheimer’s support-group members urged Chi to look for a care facility. She found the Sterling House in Peoria, and family members convinced mom it was a fancy resort she should visit. The private-pay facility provides independent living areas for each resident, and allows Chi’s mother to smoke outside and drink a daily beer under supervision.

The woman who shrank from socializing most of her “normal” life now thrives on craft activities and interaction with co-residents. When Chi and her husband delivered a birthday cake, her mom gravitated to friends instead of family and cheerfully showed her daughter the door within minutes.

“I felt guilty that I was shucking my responsibilities onto somebody else, but these are special people,” Chi says. “She’s been there since May, and it’s the best I’ve heard her sound in a long time. It’s helped. They have her on the right antidepressants.”

Chi’s mom doesn’t call unless she needs something. Like a ride to the store. “Your parents are gone,” Chi says of the disease’s impact. “They don’t care about you anymore. That’s where your support group comes in – you draw strength off them.”

Going It Alone

The second-youngest of six kids, Vickie Hernandez always felt a special closeness to her father. A few months after his paralyzing stroke, her brothers and sisters slowly stopped visiting him in the convalescent hospital; they were busy with their own lives, and he was “out of it” anyway. So, she and her husband sold their California residence and moved to a 3,200-square-foot home in Laveen, where Vickie could care for her father full-time. “I couldn’t let my dad be by himself,” she says. “I knew this was something I was going to end up doing anyway.”

Doctors at the Veterans Administration Hospital in Phoenix discovered Vickie’s father had been severely overmedicated. Once they weaned him off the drugs, he started to talk and feed himself again – and doctors were able to deliver the devastating diagnosis of Alzheimer’s.

 Vickie missed the stimulation of her bookkeeping job and close-knit family. With her husband putting in 12 hours a day as sole breadwinner, she and her dad spent long days alone together. Even on weekends, they attended church in shifts to keep constant watch on dad. People told her she was lucky to be at home.

“But I can clean only so much, I can only do so much laundry,” she would say. Maneuvering outings with her wheelchair-confined father was a nightmare, and he’d take off every chance he got. Calls from old California friends understandably slowed to a trickle, and e-mail became her primary connection to the outside world.

Within the walls of her new home, old TV programs blared. Her father knew every character’s name on Leave it to Beaver and The Munsters, and thought all the actors were still alive. She didn’t have the heart to tell him any differently – he wouldn’t remember anyway, and his confusion made her chest hurt.

They were stuck.

But guidance from the Carl T. Hayden Veterans Affairs Hospital on adult daycare allowed Vickie to volunteer at the Alzheimer’s Association twice a week, transforming their situation. Dad now spends five days a week at John C. Lincoln’s care center, a service covered by his veterans’ benefits, and she was free in August to start working again part-time.

“I thought it would be really hard for him, but my God, it’s changed him. He looks forward to his routine over there,” she says. “We’re able to do more things on the weekends because it seems like he’s happier.”

Dad, 81, is talking so much more these days that Vickie has planned a road trip to the Texas town where he grew up. She wants to hear any stories he might have left. One sister has tentatively agreed to come.

“I pray honestly I have another 10 years with my dad because he is such a good person,” says Vickie, who’s been told he could deteriorate 50 percent by age 85. “If it gets really worse, if I do have to put my dad in a home, it’s going to be hard for us.”

Sickness and Health, Richer or Poorer

Dianne Pela’s mother was in her mid-70s when she had a seizure in the middle of the night. Family suspected the progressive memory loss might be Alzheimer’s. During the diagnosis process, colon cancer was discovered. Against the family’s wishes, the doctor informed her mother she had a potentially fatal disease.

“How would you like to be told you have cancer six times?” Dianne says. “All she has is the present moment. When we take her to chemo and radiation, she gets very angry and frustrated: ‘Why am I here? Why didn’t anybody tell me?’”

The Alzheimer’s Organi-zation counseled the family, urging them to keep it simple. Or as Dianne says, “It’s OK to lie to your parents now.” Today, when her mother asks why she’s at chemo, the family says the doctor ordered routine X-rays. In 20 minutes when she asks again, they tell her the same thing.

In a way, Dianne knows she’s lucky. Her healthy 80-year-old father continues to handle primary-care duties. In addition, all five of her siblings live in the Valley, so they’ve divided responsibilities. Most important, Dianne’s parents have long-term health insurance, which isn’t an option for everyone.

Chi is concerned about what her own daughter will have to deal with if she also gets the disease. “At our age, we don’t need vacations and jewelry anymore – we need long-term care insurance,” she says. “But it costs $600 a month, and we don’t know if we’d ever get to use it. So we’re screwed.”

Personally, Chi plans on “checking out” rather than living with Alzheimer’s. Vickie told her children she would prefer to be placed in a facility. “It’s different nowadays,” she says. “Kids have it too hard.”   

Boomers’ parents are less forthcoming than their children’s generation about the eventualities of aging. But it’s a conversation that needs to happen, says Carolyn Hill, chief of clinical services for the Foundation for Senior Living in Arizona.

“We see so many people who wait until the conditions are desperate before they take action,” she says. The reality is the sicker a parent becomes, the less able they are to adapt to options such as home-health visits or daycare in an unfamiliar place.

Different Love

The disease steals away parents and loved ones, yet they remain vividly here, to be grieved in the flesh for years. “You can’t love them in the same way, because the person they were isn’t there anymore,” says Donna Heppermann, director of the Generations Program at Beatitudes Center Developing Older Adult Services (DOAS). “You have to take them as they are and let go of the things you once had in your life.”

As unlikely as it sounds, Donna’s Alzheimer’s support group members laugh a lot. They tell funny and touching stories to keep each other going and to better cherish the fading good times. Sometimes they struggle to find the flashes of joy.

Vickie told the group about visiting her mother. Twice a week, she brings to her little bottles of chilled Starbucks coffee to share. “Every time she tastes it, it’s like the very first time,” Vickie says, laughing. “She always says, ‘Oh boy, this is good! I don’t think I’ve ever had this before.’”