Silverado Senior Living - Newport Mesa, January 1, 2001 — What’s the best way to care for elderly parents? Emotional and intellectual, as well as medical, issues need to be considered.
By Alex Coolman
Ed Arimond was having a good afternoon. His daughter and wife had come to visit him in the parlor of his home in Costa Mesa and they were paying a great deal of attention to him.
When he asked for chocolate, Blanche, his wife, went to look for a piece of chocolate. And while she was gone, Arimond sang a little song to himself.
For Janene Acosta, Arimond’s daughter, the moments in which he was speaking and expressing himself were a reason for joy. Arimond, 75, has Alzheimer’s disease, and lives in Silverado Senior Living because he can’t care for himself. Since the night, about a year and a half ago, when Arimond’s symptoms of dementia suddenly became intense, he has needed more care than Blanche or Acosta, who works full time, could provide.
It wasn’t easy for Acosta to decide to put her father in Silverado.
But it was an option that struck her as being the best possible resolution to a difficult situation. And today, though she admits it can be emotionally challenging to deal with her father’s condition, she says she’s confident that she’s done the right thing.
Acosta’s situation is one that is beginning to confront many adult children of elderly parents. And it’s a situation that is going to grow increasingly common as years pass.
And even for seniors who don’t suffer from dementia, the physical changes that accompany aging can be difficult to face. Half of the population older than 65 suffer from osteoarthritis, and these numbers only go up as people get older.
Laura Mosqueda, the director of geriatrics for the UC Irvine Medical Center, said arthritis, along with common health problems such as osteoporosis and heart and lung disease, are issues more Americans have to face as the population ages.
“It can be anywhere from annoying to disabling,” she says—and that goes both for seniors and for the people who are responsible for them.
For the children of these seniors, dealing with the problems of finding care can be a major challenge—emotionally, physically and financially. There are many options for senior care, but finding the right choice for any given situation is guaranteed to be tricky because of the complex family baggage that goes with the decision.
Caring for elderly parents, for better and worse, isn’t just about health. It’s also about love and control. And even for adults who are used to making fast, effective decisions in their professional lives, trying to tackle these personal hobgoblins can be bewildering.
In a conference room in Santa Ana, Blanche Katz listened to the stories of men and women who were in the position of caring for their parents. These were the working children of seniors, people who had driven out after a day on the job for Katz’s seminar, and they spoke to her with noticeable tension. The title of the seminar, which was sponsored by the Orange County Council on Aging, was “Surviving the Stresses of Parent Care.” The message Katz was trying to get across was that helping elderly parents shouldn’t require children to destroy their own lives in the process.
Unfortunately, many children do exactly that, Katz says, especially in the first months of years after their parent becomes more frail.
“There’s stress that doesn’t seem to go away,” says Katz, who is a nurse case manager for the council. “It just kind of lingers. And it’s there. It’s real. You have to deal with it.”
Jacqueline Marcell, an Irvine resident and author of the book Elder Rage: How to Survive Caring for Aging Parents, says when her own father began to suffer from Alzheimer’s, her reaction was far from calm.
“There’s this incredible frustration out there of what do you do? Where do you get help? Where do you go?” she says. “I nearly lost it. I bought all the books on elder care.”
This is not the reaction of people who are unable to cope with life in general. Many times, it’s the people who are highly competent as professionals who find dealing with parent care most difficult.
Acosta lives in Huntington Beach and works as an art director for an Orange County advertising agency. When she speaks, she has a poise and directness that is unmistakable.
But when her father developed powerful Alzheimer’s symptoms almost overnight, Acosta wasn’t sure if she could deal with the situation.
“It’s hard. It’s really, really hard. In the beginning it was almost like ‘I can’t do this,’” she says.
Arimond had worked in advertising himself before he retired, and had been a sort of professional role model for his daughter. Now the man Acosta had admired and emulated was in a wheelchair and had difficulty speaking and understanding others.
“He was my hero,” Acosta says. “I had always been able to look up to him. He was always my biggest fan.”
When a senior begins to need a higher degree of care, whether it’s because of health problems or the onset of dementia, it often means a role reversal for parent and child. The parent who had been used to being a leader must become a follower, and the child who had lived under the guidance of the parent must step into the responsibility of making final decisions.
This can be agonizing, as Acosta’s situation suggests, because of the sadness of seeing a respected loved one reduced to a position of needing to be fed, bathed and changed.
But Acosta’s case—because her father’s cognitive decline happened quite rapidly—may actually be less difficult than that experienced by some families whose parents experience a more gradual loss of competence.
For Marcell, whose father, Jake, slowly began to show signs of dementia, this was a particularly trying issue.
Jake had been used to living on his own with his wife, Mariel, and Marcell considered the couple independent. It was only when a medical emergency sent Mariel into the hospital that Marcell became aware of the way her parents were living: in a home that had fallen into filth and disarray because Jake was no longer able to take care of things.
Marcell’s first reaction was to step in and do it all herself. She cleaned her parent’s house and threw away piles of garbage that had accumulated over the years. She set up a schedule to have maids and caregivers come visit her father periodically, and she worked to reassure him that she, personally, would be responsible for everything.
The response was hardly what she hoped. Her father, instead of expressing gratitude, became furious with her. As his dementia developed, he grew less and less shy about expressing this anger, but grew more and more certain that he wanted to have control of his own life.
His daughter, in his view, was just trying to take over his life, control his money and kick him around. And as a firm father, he wasn’t going to stand for it.
“They’re still the parent, and you’re still the child,” Marcell says. “I don’t care if you’re 80 years old and you have a 100-year-old parent. You’re still the kid.”
Not surprisingly, the first reaction of many adult children to the decline of their parents is one of denial. Even if a senior seems to be having trouble driving or leaves the stove on by mistake, these dangers often seem less frightening than the idea of actually admitting that the parent has become less competent.
“You think you’re going crazy, because you can’t make the right decision,” says 55-year-old San Clemente resident Louise Bent. Both of Bent’s parents are in assisted living homes where her mother’s Alzheimer’s and her father’s congestive heart failure and epilepsy can receive the high level of care they demand.
Bent’s mother was diagnosed with Alzheimer’s in 1989. At some point, Bent says, it became clear to her that her mother needed help. “I would leave my mother in the car to go to the bank and come back and she’d be walking around in the parking lot,” she says.
But deciding to intervene on her parents’ behalf, Bent says, was one of the hardest things she’s ever done.
“You make a decision and then you feel guilty, like you’ve taken away their individuality and their life. It takes a real toll on the caregiver because you’re damned if you do and damned if you don’t.”
Unquestionably, caring for frail parents can be trying. Dementia tends to increase an individual’s sense of vulnerability and also can reduce the inhibitions that prevent them from lashing out at family members.
The result—for Marcell, Bent, and many other children struggling to care for their parents—is that gestures intended in a spirit of love and concern are sometimes met with anger and even violence.
But finding the right kind of care can make a difference between a situation that leaves both parent and child unhappy and one that manages to make a difficult situation livable.
“That’s what we’re always looking at in geriatrics,” Mosqueda said. “Not just, ‘Do you have diabetes, do you have congestive heart failure,’ but how can we help you deal with these chronic illnesses so they don’t interfere with those things that bring you joy and meaning?”
At the Brighton Gardens assisted living home in San Juan Capistrano, the project of making senior care less intimidating seems to have developed into something of an art form.
The Marriott Corporation runs the home, which has about 90 residents, and the sense one gets from walking through its halls is one of orderly comfort rather than anxiety.
“People come in with the old impression of a convalescent home,” says Roger Lovett, a spokesman for Brighton Gardens. They expect to see listless, heavily medicated figures shuffling around tiled halls or seniors who are full of tension and despair.
Instead, the home bustles with activity. And even its special care unit for dementia patients is free of the stress that characterized assisted living homes of an earlier era.
Lovett says Brighton Gardens and its competitors have to work hard to keep standards high. In response to the aging of the population, assisted living homes have sprouted up all over the county, each vying to capture a piece of the industry.
These facilities are not cheap. A room at Brighton Gardens can run from a little more than $2,000 per month to about $5,000 per month.
“The value for your dollar has to be evident for the person coming in here,” Lovett says. “The person coming into a place like this is more affluent and expects more. And it’s a shopper’s market right now. There’s a ton of communities opening up each year.”
Moreover, there are a lot of options for care besides the elaborate facilities of an assisted living situation. For some people—such as seniors who only need a small amount of help to deal with things like medication, or dementia patients who are very far advanced and are no longer interested in complex activities—the level of attention provided at a home like Brighton Gardens may be unnecessary.
In some situations, keeping a parent at home may make sense, both for the emotional closeness this can bring and for the opportunity it may give for meticulous attention to medical issues.
“There’s a sense of security, a sense of familiarity” about the home environment, says Steve Barlam, the co-founder of LivHOME. The company recently opened an Orange County office to provide services for people hoping to remain in their homes in later years.
Barlam says he worries about the idea of moving some Alzheimer’s patients into assisted living situations, and feels that in many cases people are better served by remaining in an environment they understand.
“It’s hard to learn new things” when you are suffering from dementia, he says. “So if you move somebody into a new facility, it takes them so much longer to make that transition.”
And remaining in the home also may be symbolically powerful because it suggests the continuity of life rather than its closure.
“There’s a sense, when one moves against one’s will, that this is the final chapter,” he says.
Also an option for adult children whose parents need attention is the possibility of hiring part-time caregivers. For one day a week, say, these part-time helpers can give the harried child a sense of relief from the stresses of being responsible.
With every option, there are risks and pitfalls.
Some assisted living homes are nearly immaculate and staffed by cheerful, competent professionals. But it took Bent three years to find a satisfactory housing situation for her parents, and in that time she saw a wrenching collection of scenes from second-rate homes.
“I walked in there [to the home where Bent’s mother was] and her bed was full of ants and she was full of ants,” she says. “All the books in the world don’t prepare you for this.”
As frightening as the horror stories sound, the reality of keeping a parent at home can be equally grim. For Marcell, attempting to intervene in her father’s life only encouraged wrath and trickery.
“Demented does not mean stupid,” she says.
“[Parents] can pull out every manipulation from a lifetime of craftiness.”
And part-time workers who are supposed to provide a much-needed rest from stress can sometimes turn out to be a headache themselves.
“I interviewed and interviewed and interviewed,” Bent says. “I had people coming in there to live [with my parents] and found out some of them were ripping them off.”
The fact that caregivers are often paid so poorly, too.
Many people Marcell knows lost caregivers when the United States Census Bureau started hiring workers. The reason? Going door to door with a census form paid $2 an hour better than working with seniors, and it involved much less stress.
When you talk to people who have successfully dealt with their parent’s needs, two themes seem to recur.
One is their insistence on the importance of going to agencies that deal with senior issues. The point, they say, is that it isn’t necessary to reinvent the wheel when dealing with a parent’s situation. Even the most trying cases will be familiar to the nurses and professionals who have dealt with seniors, and that familiarity can make it considerably easier to come up with an intelligent solution.
“I say get thee to the Alzheimer’s Association,” Marcell says. “That’s my biggest thing.”
The Orange County Council on Aging, too, has a wealth of resources for people who are trying to deal with their parent’s situation.
Katz acts as a case manager for the Council’s North Orange County Linkages program, which tries to assess the needs of older adults and find the best kind of services for them.
Katz says people are often surprised to hear that the council is a nonprofit agency and that some of its services, such as its seminar on caregiving, are so inexpensive. But it’s out there, and it can be useful for the people who are looking for guidance.
There also are commercial services, such as those offered by LivHOME, that may provide a kind of one-stop shopping for care. Barlam says he thinks his company’s approach could be particularly useful for some families because it can customize care to fit the nuances of an individual life.
Everybody’s situation is absolutely unique,” Barlam says. “Saying that there’s one solution out there just doesn’t make sense.”
But the second point that many adult children stress in talking about their parent’s situations is that their experiences are not entirely unique.
The circumstances are different from case to case, of course—some people struggle with difficult health problems, others cope with dementia—but the emotional challenges are fundamentally the same.
And what many adult children stress is the importance of sharing the stories of these challenges. Simply speaking about the difficulties that one encounters can be enormously therapeutic, particularly if it manages to create a sense of recognition in another person who is going through a struggle.
“We all have extremely similar stories,” Bent says. “Thank God we can talk to each other.”
One of the most frightening things Katz says she encounters when she speaks with families who have aging parents is the reluctance to discuss what may lie ahead.
“I ask the parents, ‘Have you talked to your children about how your Medicare is going to pay or not pay for these things?’ They say, ‘Oh no, I would never burden my children with these kinds of things.’”
But the burden comes, whether families have talked about it ahead of time or not. And Katz says the ones who can communicate about their fears and their anxieties generally do a much better job of coping with the future.
Ultimately, of course, facing death is the reality for everyone who lives. But the children who have managed to face it together with their parents in a way that is open and honest seem to look at things with an attitude that is rich in perspective.
“This is life,” Acosta said as she sat with her father. “This is kind of the way life plays itself out.”
Blanche, who was sitting nearby, seemed to agree. “The more you put into it, the more you get out of it,” she said. “This is what life dealt us, and we’re playing our cards very well.”
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Growing Together program, call (714) 557-0777
