I remember feeling a mix of sadness and anger when the first signs of dementia began to creep into conversations with my mother soon after she turned 80.
She’d say something about all the papers she still had to grade for her journalism students, even though she had stopped teaching five years earlier. Or she’d ask where her dog Kate was, even though Kate had died long ago.
Most painful of all was when she’d ask why my father wasn’t home yet – even though it had been 15 years since he passed away.
I wasn’t very patient with her – at least not at first. I’d quickly correct her, sometimes angrily.
“Mom, you’re not in New York. You’re at Eastpointe, where you’ve lived for almost 10 years.”
In retrospect, I could have handled the situation with a great deal more wisdom and sensitivity. Over time, I stopped correcting her, let her go on saying and believing things that were completely untrue.
But there was part of me that felt guilty for enabling her to live in a fantasy world. This, after all, was a woman who graduated from Vassar, spent 20 years as an award-winning reporter and editor at the Red Bank Register, then capped off her career teaching journalism at Fairleigh-Dickinson. She was all about logic and facts and intellectual rigor. She was among the deepest thinkers I’ve ever known.
I still feel guilty.
How to treat someone with Alzheimer’s disease or other form of dementia is among the most challenging issues of our time, raising profound ethical questions with serious implications for all parties involved. I didn’t fully appreciate this fact until I read a remarkable article in the Oct. 8 issue of The New Yorker magazine. (I’m a lifelong reader of The New Yorker because my mother was a lifelong reader of The New Yorker.)
The article, by staff writer Larissa MacFarquhar, is titled “The Memory House: Should the Illusions of Dementia Be Corrected or Accepted?” MacFarquhar visited a senior community near Cleveland, Ohio, that not only accepts illusions – it encourages them.
“The large central room of the memory-care unit was designed to look like an old-fashioned American town square,” she writes. “There was a small fountain surrounded by plants and a low stone wall; there were a couple of lampposts and benches, tables and chairs set about. … Two long hallways, which led off from the opposite sides of the central room, looked like streets in the same town, with clapboard facades and porches on either side. … The ceiling consisted of bright light panels painted to look like a blue sky dotted with clouds. In the evening, as it began to grow dark outside, lights on the porches came on. Sometime later, the street lamps were lit; and finally, around eight o’clock, the ceiling sky was switched off, so that the unit came to look like a small-town street at night.”
What to make of this approach to dementia care? As MacFarquhar discovered, there’s little consensus among experts about whether “simulated presence therapy,” as it’s called, is either effective or moral. Some view it as a “psychological placebo,” while others see it as outright deception tantamount to lying.
But is lying to someone suffering from dementia the same as lying to anyone else?
“To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter,” MacFarquhar observes. “If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? … What is more important, dignity or happiness?”
Elder-care experts, it turns out, have been debating the issue for decades. In the 1960s, a doctor-nurse team working with elderly psychiatric patients in the South developed a program called “reality orientation” that was the opposite of “simulated response therapy.”
“The core of the program was not giving up hope that even the most bewildered, isolated patient could, with enough training, return to the world,” MacFarquhar explains. The key to the program was facts – constantly reminding patients who they are, where they are, what day it is, etc. “For decades, reality orientation was extraordinarily influential – even now, it is a rare nursing home that does not have a reality-orientation board somewhere on display.”
But by the 1980s, some practitioners in the U.S. and U.K. began to reject reality orientation in favor of what one pioneering social worker, Naomi Feil, called “validation therapy.”
“She believed that it was wrong to lie outright, but also wrong to correct: the thing to do was to enter into the emotional world of the person with dementia and validate their feelings, because feelings were more important than facts.”
Then, in the 1990s, an Englishwoman named Penny Garner went even further in her rejection of the reality-orientation approach. Her first rule: Never contradict anything someone with dementia says.
“Garner’s method allowed many people with dementia to avoid panic and misery and to live out their last years in a state of happy delusion,” MacFarquhar writes. “How could that be wrong?”
But in fact, Garner’s approach drew strong condemnation from many in the medical community, including the British Alzheimer’s Society. To critics, “even passive lies – artificial worlds and fake bus stops – were just a lazy short-term solution that avoided deeper problems,” MacFarquhar writes of the reaction to Garner’s methods.
Ultimately, the debate over how to treat people with dementia touches on deep philosophical questions about the nature of identity -- the essence of being human. Citing the late philosopher Ronald Dworkin, MacFarquhar writes: “When people dread the total dependency of late-stage dementia, they don’t just dread its effect on others; they dread the way it warps the shape and story of their life. For some, the prospect that they might live their last years content with childlike pleasures, kept happy with benevolent lies, would not be a relief but a horror.”
Dworkin assumed, however, that the man who dreaded late-stage dementia when he was younger is the “same person” as the elderly gentleman who now seems content with a childlike existence.
“But what if the happy [elderly] person can no longer remember anything about the man he once was –- is he still the same person in any meaningful sense? And, if not, is it right to end his happy life in order to preserve the dignity of, in effect, somebody else?”
For those of us with family members suffering from dementia, there are no easy answers to these questions –- no black or white, no “right” or “wrong.” But in thinking about them, we inevitably discover something about ourselves.
Written by T.J. Foderaro
Caring for an elderly parent, especially one who is physically frail and congitively impaired, is challenging under the best of circumstances. Even with home-care aides to help out, I often felt overwhelmed managing my mother’s finances, grocery deliveries, doctors’ appointments and correspondence -- not to mention weekly chores and home repairs at her condominium in Highalnds.
But in retrospect, I had one very big advantage: my youth. Perhaps the word should be in quotes -- “youth” -- for in fact I was in my early 50s when my mother started to decline. But I was healthy and strong and more or less satisfied both professionally and financially. And my sister, a constant companion in my efforts to help our mom, was similarly situated -- and three years younger.
What if it had been otherwise? What if my mother lived another 15 years, at which point I myself would have been a senior citizen? What if I had my own health problems? What if I, too, struggled with memory loss?
I was prompted to consider such possibilities by an excellent piece of journalism that appeared last week in the Arizona Daily Star. The lengthy article is topped by an appropriately lengthy headline: “As We Live Longer, More Older Adults Face Caring for Even Older Parents.”
It’s not surprising. Since I was born, the average life expectancy in the United States has risen from about 70 to 79. And in healthier, wealthier parts of the country, including Monmouth County, it’s not unusual for men and women to live well into their 90s.
According to a recent report from the Center for Retirement Research at Boston College, 12% of children who are caring for elderly parents are themselves 70 or older. At Twin Lights Home Care, about half of our clients are at least 90 years old. More than a few have children in their mid- to late 60s.
The Arizona Daily Star spoke to several families in which children in their 60s and 70s are still providing care for their parents.
“Caring for frail parents in their 90s and early 100s can be daunting while the caregivers themselves are in their 60s or even 70s,” according to the article. “The situation is forcing older adult children, some of them at or nearing retirement age, to decide if they are physically, mentally and financially capable of caring for a parent at the end of their lives.”
The article cites the case of a 100-year-old woman who is cared for by her seven children, ranging in age from 59 to 73. The mother suffers from dementia, has very limited hearing and vision and uses a wheelchair. Imagine the mental, physical and emotional strains that puts on her children.
“She would not sleep at night,” said one of her sons, who is 64. “In the day, she would stand at the gate outside yelling for help for 45 minutes. She would try to climb over the fence. It was very stressful.”
The situation improved somewhat after a doctor adjusted the woman’s medication. But her children continued to struggle.
“We wondered and questioned, could we do this – care for her and keep her safe?” one daughter said. “We relied on each other and learned as we went along.”
Although their own retirements have been less than peaceful and relaxing, the sons and daughters of this 100-year-old woman have remarkably positive attitudes.
“I find strength in the love I have for her,” a 69-year-old daughter says. “She did so much for me. It is our turn now to do for her. It is not a burden. It is a blessing caring for her.”
Written by T.J. Foderaro