By JUDD MATSUNAGA, Esq.
As a young boy growing up in the Crenshaw District, my parents always taught me to tell the truth. Some 50 years later, however, I learned that honesty isn’t always “the best policy.”
For example, when I took my 95-year-old uncle with dementia out for lunch, he told me that a family member had stolen his car. Not knowing any better, I corrected him, saying, “That couldn’t have happened because you gave the car away several months ago.” What a mistake!
Since then I’ve learned that presenting those with memory disorders with facts they don’t understand is not only futile but can at times be cruel. When you disrupt their reality with truth – facts you think they need to understand – it can cause distress, anxiety, and agitation. With my uncle, “agitation” isn’t a strong enough word. He went ballistic. He was so outraged and incensed that the waiter ran over to make sure things were all right.
I recently read an article in The Washington Post (March 17, 2018) in which Martin Schrieber, former governor of Wisconsin and the author of “My Two Elaines: Learning, Coping and Surviving as an Alzheimer’s Caregiver,” said, “There’s no benefit in repeatedly trying to correct loved ones and a fib can actually draw the caregiver closer to the patient.”
Schrieber speaks of his wife Elaine, 79 years old and diagnosed with Alzheimer’s, who repeatedly asks, “How are my parents?” Early on in her illness, he told her the cold truth, which was that both are dead. “The shock on her face was so devastating because she worried that she might not have gone to the funerals or said goodbye.”
Over time (she’s been diagnosed for 14 years now), Schreiber says he could clearly see the anxiety that the truth provoked, which is why he started to fib, telling her instead: “Your parents are very, very happy. In fact, your mom is at church.”
“This is about the importance of joining the world of the person with Alzheimer’s,” he said. Schreiber is well-known as a big proponent of therapeutic fibbing.
However, therapeutic fibbing is somewhat controversial. Although doctors and medical ethicists are generally proponents of truth-telling, dementia experts tend to support these kinds of white lies — with certain caveats. Amy D’Aprix, an aging and caregiving expert, cautions that caregivers must not justify telling a therapeutic fib to avoid difficult or painful conversations.
In the Washington Post article, D’Aprix said, “Once I was asked if a daughter-in-law should tell her mother-in-law, who had dementia, that her son had just died. I said, ‘Yes, she deserves to be told, once or maybe twice.’ That’s because the mom deserved the right to be sad or grieve even if she couldn’t retain the information. But more often, that simply feels cruel.”
Steven Petrow, who wrote the Washington Post article entitled “Is it okay to tell an Alzheimer’s patient a white lie?,” wrote, “I wish I had known more about all this after my mother died last year, because my father asked repeatedly — sometimes 10 times within the hour — where she was. I felt I needed to be honest and tell him the truth, and so I did. ‘Mom passed away, Dad.’ Each time I could see his face absorb the painful shock.”
But, “for people who are cognitively impaired to a level where they cannot absorb or process information well enough to understand it, therapeutic fibbing is a way to avoid upsetting them in ways that serve no purpose,” said D’Aprix, developer of the Home Instead Senior Care Alzheimer’s CARE Training Program.
D’Aprix is adamant that therapeutic fibbing is not the one-size-fits-all answer. She also recommends that caregivers consider these other strategies:
● Try changing the subject. Instead of lying or getting into an argument, redirect the person to a new topic.
● Empathize. Listen for the emotion driving the patient’s behavior and validate it, rather than argue with the facts. For instance, if the person is angry or agitated, acknowledge those feelings as real, which they are, even if the object of their ire is not.
● Do not try to force patients to see things through your eyes. They simply may not be able to do so, and any efforts may lead to greater agitation or suffering.
● Accept their reality even when it differs from your own. If your loved one is okay and not in danger, let them be in their own world.
Jason Karlawish, co-director of the University of Pennsylvania Memory Center, prefers calling this approach “loving deception.” He says whether or not to lie is about intent, reminding us that “the moral role of the caregiver is to respect the person’s sense of identity and self.” He strongly advises that “the default is the truth and the mere fact that the truth may be painful isn’t sufficient to avoid it. Only if the patient cannot process and make sense of a particular truth is it okay to lie.”
Now, let’s be clear — I am not saying it’s OK to lie. But I do know that many families in the Rafu Shimpo community are struggling with the same problem, i.e., Do you tell the truth when you know the information will cause them pain? Perhaps this will help – the Alzheimer’s Association recommends the practice of therapeutic fibbing, which they say is the kindest way to reorient Alzheimer’s and dementia patients. (Source: www.seniorsmatter.com/therapeutic-fibbing-helps-alzheimers-dementia-patients)
The article quotes Mary Kay Mahoney, gerontologist at Bella Villaggio Senior Living in Palm Desert. “Therapeutic fibbing is all about meeting that person in their reality,” she said, “because no matter how hard you try, you cannot change a person’s dementia or Alzheimer’s disease. So, what do you do? What is the most loving thing to do?”
Those with Alzheimer’s and other memory disorders often live in the past, where they find comfort in memories of loved ones who are no longer alive and events that happened during their happiest years. As a result, they can become agitated and anxious when well-meaning but blunt caregivers correct their internal reality.
Mahoney believes therapeutic fibbing is the best option for families and caregivers to communicate with their loved ones with memory disorders. “I worked with a son in a community that refused to lie to his mother,” she explained. “Every time he visited her, he left crying, and it took her caregivers most of the afternoon to calm his mother down because he couldn’t ‘lie.’” In this case, the son couldn’t meet his mother in her reality, which was disturbing and disruptive to her and caused him unnecessary pain.
According to the Alzheimer’s Association, it is “important to put oneself in the shoes of your loved one and acknowledge how frightening” their situation must be. In her memoir, “Floating In the Deep End,” Patti Davis, daughter of former U.S. President Ronald Reagan, devotes a chapter to what she dubs “creative lying.” She recalls a few instances in which lies made him less flustered or worried about skipping an obligation.
“During one of these episodes, my father believed it was morning and he needed to go to the office. We told him that the office called and said he didn’t need to come in because it was being fumigated, so no one was going to be allowed in,” Davis wrote. “He accepted that, and shortly afterward, forgot about going to the office.” Creative lying kept him calm, satisfied, and grounded in their reality.
Davis offered a consolation for caregivers struggling with this choice, “Lying in the service of kindness is not a punishable offense. In fact,” she said, “I suspect it earns us karma points.” (Source: www.beingpatient.com, “The Pros and Cons of ‘Therapeutic Lying’ in Dementia Care,” Feb. 11, 2022)
In caring for someone with dementia, white lies or bending the truth can help keep the peace.
“We know of really sad and horrible stories of people who drive and shouldn’t be driving,” said clinical psychologist Linda Ercoli. “They get into a collision. They get hurt or kill themselves or someone else. A little well-intentioned, well-placed dishonesty can make the experience of having one’s freedom to drive taken away less traumatic, while achieving the goal of keeping people — not only the driver — safe.”
Ercoli said that telling a tale of a car that’s being repaired when it was actually sold takes the hurt and indignity one might feel when hearing they pose a danger to others as a driver. It also makes a tough situation a little less traumatizing for the caregiver. It can be a kinder, gentler approach to confiscating car keys or even going as far as reporting someone to the Department of Motor Vehicles.
Here’s an example of how the two approaches work that I found online (www.dailycaring.com):
(1) Being completely truthful
Your mom: School is over. My mommy is coming to pick me up now. I need to go outside to wait for her!
You: You’re 89 years old. You haven’t been to school in decades. And don’t you remember that your mom died 25 years ago? You don’t need to go outside because she’s not coming to pick you up.
Your mom: What? What do you mean my mom is dead? No! She can’t be dead!! I saw her this morning! She told me she would pick me up!! I need to go outside to wait!! (She’s crying, agitated, and screaming.)
(2) Using therapeutic fibbing
Your mom: School is over. My mommy is coming to pick me up now. I need to go outside to wait for her!
You: Oh yes, it’s almost time to go. Your mom asked me to give you a snack first, so you won’t get hungry on the way home. Let’s have some juice and crackers while we wait.
Your mom: Ok, I’ll have a snack.
Use this distraction as an opportunity to occupy her with the snack and a fun activity until she lets go of or forgets about the idea of her mother picking her up.
In conclusion, at the end of the day, the debate continues. Ultimately, there no one “right” approach. Most caregiving experts can agree on one thing: No one should be judged for how they manage each day caring for someone with dementia. There will always be a balance to strike between the difficulty of lying to a loved one. You should do whatever you can to reduce the stress and challenges for both you and your loved one.
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Judd Matsunaga, Esq., is the founding partner of the Law Offices of Matsunaga & Associates, specializing in estate/Medi-Cal planning, probate, personal injury and real estate law. With offices in Torrance, Hollywood, Sherman Oaks, Pasadena and Fountain Valley, he can be reached at (800) 411-0546. Opinions expressed in this column are not necessarily those of The Rafu Shimpo.