machado: is it wrong to lie to someone with dementia?
it may feel deceitful or disrespectful, but therapeutic fibbing can make communication and care easier, allowing the caregiver to join their loved one's skewed reality while preserving their peace and dignity.
8 minute read
if there's even a sliver of serenity in allowing ourselves to sink into the reality in which our loved one is most comfortable, why wouldn't we do it? getty
“hello, my dear,” she said, gently touching my elbow with one hand, and handing me a balled-up kleenex with the other. “this is to pay for my meal, and i added a good tip.” this was the conversation that awaited me every time i got off the elevator on the memory care floor to visit my dad. eleanor was a petite lady who was in her nineties, according to one of the nurses. i learned from the photo collage that hung on the wall outside of her room that she had been an army nurse in wwii — a role that earned her a medal of honour said the inscription on the gold frame. another photo showed her and a tall, distinguished-looking man on their wedding day. he was looking down at her, smiling widely, obviously smitten. the rest of the photos were of babies, dogs and houses — snapshots of a life once fully lived.
the first time eleanor met me at the elevator doors with her kleenex, my dad had been living down the hall for just a week. i had been visiting every day, weighed down by such deep sadness, and still haunted by the image of him standing in the window of his room looking down on my mom and i in the parking lot as we left him there for the first time.
i hadn’t yet gotten used to the hot air that would rush at me when i pushed open the front door of the building, or the stagnant smell of disinfectant mixed with old porridge that hung heavy in the elevator air. if it didn’t make any stops, i could hold my breath until i landed at my dad’s floor. it was the 7th, the dementia floor, and the very last one — there was nowhere else to go. not enough floors to shake the sadness of watching him disappear, and in those early days, not enough floors to prepare myself for eleanor.
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she knew something wasn’t right, maybe it was her
it took me a few tries to figure out the right thing to say to this sweet little wisp of a woman with her little black vinyl purse, pink knitted shawl and piercing blue eyes. the look on her face was honest and intense, one of worried anticipation and desperate hope, as if she knew innately that something wasn’t right, perhaps that it was her that was wrong and it was making her nervous. she needed me to make it ok. it was clear that telling her that she wasn’t in a restaurant, that her kleenex wasn’t money, and that i didn’t work there was not what she was looking for. but it also felt awkward and strange to just make stuff up — intensely sad, too.
i muddled through these conversations, trying not to use the syrupy infantilizing singsongy voice that i had heard nurses sometimes use with my dad. instead, i attempted to speak with confidence and nonchalance, as if detailed reviews of the “restaurant” food, requests to speak with the chef and debating the tip amount as she counted out her kleenex-money made perfect sense.
one of these times, a physiotherapist was slowly walking by the elevator, an arm around the waist of a man whose eyes were focused on his feet, concentrating on getting one in front of the other. noticing that eleanor had me cornered waving her purse and kleenex in my face, he chuckled.
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“just take the kleenex,” he said, smiling. “this place is an another reality. you’ll get used to it.”
i never got used to it — that raw vulnerability that comes with being lost in your mind is so heartbreaking. i did get better at it, though.
further down the hall was lionel. a bald 80-something man with a scottish accent, lionel liked his hair to be combed to the left and his plaid shirts ironed. known for his swagger with the ladies, he always sported a brown, corduroy newsboy hat that he would tilt to the right on his head, just so. he liked to chat with the women who passed by his regular spot in front of the personal support workers (psw) desk. lionel was always wondering where the bus was, why the psws were never getting on it, and why his tax dollars were going to a system that clearly had issues.
“i am late for work,” he’d say, in an agitated tone, tapping his slippered feet together as he spoke. someone would tell him that there was a slowdown on the line, and he’d snooze for an hour or so, only to wake and ask about the bus again.
just past lionel was esther, who would push her walker back and forth down the hall, from end to end, all day, a diaper pulling her polyester pants down to her hips. she would ask everyone she passed if they had seen ellen, her daughter. she might be lost, she’d say, her eyebrows creased with worry, her breath fast with panic. imagine thinking you have lost your child. comfort for esther was someone saying that they had seen ellen, that she was ok and waiting for her mother down the hall. esther would then begin another slow walk with a smile on her face.
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clearly, as awkward as these conversations were, they were important — critical, even — exercises in compassion, empathy and kindness. they also required you to be at the top of your game if you hoped to do it right. show even a glimmer of confusion or take too long to respond, and that could churn up anxiety, confusion and anger. go too the far the other way, like asking well-meaning questions that veered outside of the boundaries of the conversation (i.e., asking esther if she had other children), and the potential outcome was worse, reminding the person of all they can’t remember or understand.
recently, a friend shared his experience with his dad, who, diagnosed with dementia, recently moved into a memory care home because he was no longer safe living alone. he would have never left his home voluntarily, so my friend made up a story about how he had to move into a hotel temporarily while the house was being repaired. interestingly, despite being plagued with memory lapses and periods of confusion, he relentlessly remembers that he has a house and that he was told that the “hotel” was not forever. so, of course, he wants to know when he is leaving — a question that he calls to ask numerous times each day.
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therapeutic fibbing can lessen anxiety in people with dementia
that a memory lapse has not come along to help him forget about his house and begin to settle into his new living arrangements is difficult in itself — it means a longer transition and possibly distress for him. it also means deep heartbreak for his son who finds himself continuously weaving tales to explain why his dad can’t go home. part of the reason for the heartbreak is, of course, that these discussions even have to be had in the first place. but there’s more to it than that. there’s also a sense of stinging betrayal that comes from not telling the truth, made worse by the fact that their conversations are full of caring and love. his dad clearly trusts him completely.
certainly, a loving relationship that now feels mendacious is hard to take. but is telling these untruths — spoken in the spirit of compassion and caring — really as horrible as it feels?
not really, say the experts, and it may be all in the way you see it. instead of calling it lying, they say that bending the truth, embellishing or even just making stuff up is more kindly known as “therapeutic fibbing.” therapeutic, because often, contrary to what our instincts tell us, fibbing is often exactly what a person with dementia needs to feel less anxious, fearful and powerless. indeed, according to the aarp, an american interest group supporting people over 50, surveys of healthcare professionals in the u.k and australia showed that they believed occasionally lying to dementia patients was beneficial. even people with early-stage dementia agreed with lying, reported another u.k. study, if it was done with good intentions and at more advanced stages of disease.
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not telling the truth is also good for caregivers
not telling the truth can also be good for caregivers, based on a report from the city university of new york (cuny), entitled, “an assessment of the therapeutic fib.”
through a series of focus groups and one-on-one interviews with non-medical people who were caring for someone with dementia, researchers explored their opinions and perspectives on not being truthful with their loved one. and while there were difficult emotions around it — feeling like they were being deceitful or disrespectful to someone they cared about, for example — the study concluded that fibbing makes communication, and by extension, care, easier, allowing the caregiver to join their loved one’s skewed reality, instead of trying to force the person with dementia to fit what’s actually true. which is a hopeless task.
“it is impossible to drag a person with compromised cognition into our world, yet it is simple for us to preserve the patient’s dignity and peace by entering his,” write the study authors.
certainly, there’s nothing about losing someone to dementia that is dignified or peaceful, and if you are a caregiver, you know that it’s the longest, most painful goodbye ever. but if, amid all of the awfulness, there’s even a sliver of serenity in allowing ourselves to sink into the reality in which our loved one is most comfortable, why wouldn’t we do it?
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for sure, lying isn’t easy, but neither is getting lost in your mind. so then, eleanor, i am really glad you liked the steak, i’ll tell the chef that it was a bit dry this time, and thanks for the tip; lionel, i heard the bus is stuck in traffic, it should be here soon; and esther, don’t worry, your daughter is eating a chocolate ice cream cone in the garden, you’ll find her at the end of the hall.
lisa machado is the executive producer of healthing.ca.
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