When Honesty Isn't the Best Policy in 'Dementialand'

A nursing home administrator was giving me a quick tour of her facility after I did some education for employees. A sign outside a resident room caught my eye. It read:

1. Tell Mom that they are billing Frank (my uncle) for her meals.
2. Tell Mom that Dad is at Home Depot.

The signature at the bottom was “The Family.”

It was written in messy cursive and the edges were tattered. It looks like it had been posted for quite a while. I asked about it.

The administrator explained that the resident, who I will call Lynn, had Parkinson’s disease with dementia. She tended to be obsessed with two topics: 1. to whom she should write a check for her meals, and 2. where her husband was.

From the time she moved into the nursing home, Lynn was worried about how to pay for her meals. She would tell her family and staff that she never got the bill for her dinner and was worried because she hadn’t paid. It was not uncommon for Lynn to have so much anxiety about this that she would cry. At one point, she was trying to give her jewelry to the dietary staff because she couldn’t find her checkbook to pay.

At first, they tried to tell her that the meals were free. But then she become focused on where she should send a thank you note. If they told her that she had already paid for the meals, Lynn would worry because she didn’t remember writing a check… and she wasn’t sure if she had that much money in her account. She wanted to know how many meals she had paid for and when she’d have to pay again. She got upset when no one could tell her.

Finally, her daughter figured out the solution. Lynn had a rich brother named Frank. Despite having a lot of money, Lynn was always critical of Frank because he never paid for anything. Because of this, they hadn’t spoken in over a decade. They family wasn’t even certain that Frank was still alive.

One day Lynn started asking for her checkbook and insisting she write a check to someone for her meals. Her daughter, without thinking, said, “They’re billing Frank.”

Lynn loved this. It became the standard response for family family and staff. She usually responded with something like, “It’s about time that old bastard paid for something. Send him my doctor’s bill, too!”

Lynn’s other stressor was locating her husband. She would insist that he said he would be there to pick her up. She worried that perhaps he had fallen ill or gotten in a car accident. She would stare out her window for hours – refusing to participate in activities while waiting for a husband who passed away years ago. It was heartbreaking.

At first, her family would remind her that her husband had died. She would be upset that he had passed away, but even more upset that she hadn’t been at the funeral.

“Who misses their own husband’s funeral?” she would ask, often in tears. “Everyone must think I’m terrible.”

They would remind her she was at the funeral. At times, they even showed her family photos taken at the funeral. She would argue that the photos were taken at family weddings.

Her family said that their reminder about her husband being gone was “gentle.” I would argue that there’s really no way to gently tell someone their spouse is dead… whether that death occurred yesterday or 10 years ago.

Without intention, they were inflicting pain on Lynn. And the pain they were inflicting was without purpose. She would ask about her husband again within an hour. It was like giving someone a shot with a giant needle – but not injecting any medication. What was the point?

Her family realized this in time. Her daughter started saying Lynn’s husband was at Home Depot.

Why Home Depot? I guess that’s where he spent a lot of time. It was a family joke that Lynn’s husband could wander around Home Depot for hours, and he always came home with bags of unnecessary tools he would ever use. He was a great shopper but a poor handyman.

When told her husband was at Home Depot, Lynn would throw back her head and laugh.

“I should have known!” she’d say.

Her family realized that the two “rules” that they posted were key in reducing their mother’s stress. Telling the truth was only increasing her anxiety. Coming up with a standard response that alleviated their mom’s worry (and even brought her joy) made visits so much more enjoyable for everyone.

It was at a care conference that her daughter asked the staff, “How come no one told us it was OK to lie?”

I try not to use the word “lie.” I more frequently use “step into their world” or “therapeutic fib.” People tend to be more comfortable with euphemisms, right? I mean, that’s why we have euphemisms.

We prefer to say people “pass away” rather than die. We think it’s more polite to tell people we were “sick to our stomach” than to say we vomited. We prefer to say employees were “let go” rather than fired.

We shy away from harsh and blunt language in favor of something more sanitized.

And many people shudder at the thought that they are liars… even if lying is the best possible strategy in a situation that isn’t ideal.

The reality is that we are taught to feel guilty about lying. Honesty is one of the best qualities in a human being. Above all, good people always tell the truth.

When I was a teenager, I would have said the only acceptable reason to lie would involve an elaborate set-up for a surprise birthday party. In fact, I went through a stage in early adolescence where wondered how it was ethical for parents to lie to their children about Santa (and the Easter Bunny and the Tooth Fairy) but then punish their kids if they caught them in a lie.

Lying was wrong. Black and white. Liars not only got sent to their room and punished but also took a step closer to hell. The truth was always the way. You couldn’t have a positive relationship with someone if you weren’t honest.

But sometimes the simplest and most straightforward rules change. Maybe honesty isn’t always the best policy. Maybe it’s the best policy most of the time.

And sometimes you find yourself lying to the same person who taught you to tell the truth.

Because you love them.

Because you don’t want them to stress that they’ve been stealing meals.

Because you don’t want them to worry about why their husband is late.

Because sometimes dementia changes the rules of relationships.

And we adjust.