Confabulation: When what appears to be a lie actually isn’t.

Confabulation: When what appears to be a lie actually isn’t.

Elvis Presley’s birthplace, Tupelo, Mississippi, about three years after my dad was diagnosed with Alzheimer’s. 

We visited the simple white shotgun home in which Elvis was born. And then, heading for the modern brick museum and gift shop, we walked along a winding path lined with brass plaques that highlighted events in Elvis’s life. 

As we walked, Daddy shared his own memories of Elvis. He spun tales of their dinners together and told me what a team he and Elvis made when they negotiated contracts together. And the parties Elvis hosted at Graceland? I got to hear every detail about the glamorous guests, over-the-top entertainment, and the delicious food and flowing drinks.

We walked the grounds for a half-hour or so as my dad shared these stories. I interjected with wow, really, and the occasional question. After a short time, I noticed that other visitors were trailing us, working to overhear the tales that my dad told, clearly wondering who he was and how he’d been lucky enough to spend that kind of time with Elvis.

Only I knew that not a word he told me was true. Though he believed that everything had happened just as he described it, my dad never met Elvis. 

Many people who live with dementia, especially from the middle stages on, come up with stories that are untrue. Sometimes the untruth is just a detail; sometimes the entire story is fabricated. 

They aren’t lying. They believe everything they’re saying, and they don’t have any intent to mislead. They’re just sharing memories that never actually happened, at least not in the way they’re telling the story.

The formal name for this syndrome is confabulation. Confabulation is marked by certain characteristics:

  • There’s no intent to deceive and no attempt to manipulate.  
  • There’s no awareness that what they’re saying is untrue. The person who’s confabulating believes every word they’re saying.
  • The story may be based on an actual memory, perhaps from another setting. For example, perhaps my dad negotiated contracts with a hunka-hunka burnin’ love whose nickname was Elvis.
  • The story might spring from distorted, misperceived, or misremembered facts.  Over the course of his career, my dad represented a number of well-known people. Perhaps some of the things he told me about did happen, just not with Elvis.
  • The story might be plausible, or it might be more of an unbelievable tall tale. 

Confabulation can be an unimportant side story, but it can also cause real problems. Fun Elvis stories present no issues, but a confabulation in response to a medical questions might actually be dangerous.

So, how can you, as a family member and care-partner or caregiver, respond?

As is almost always true in talking with someone who’s living with dementia, the cardinal rule is Don’t Argue. Don’t try to use logic to prove that what they’re saying is untrue. Don’t try to reorient them to reality as you (and most of the rest of us) perceive it. If you do, chances are that an ugly argument will result, and even if you win the argument, you’ll both lose.

Instead, try stepping into their reality. Of course, you have to be sure it’s safe to do so. When my dad was moving toward cars speeding down the road thinking he was stopping a Nazi invasion, I couldn’t go along. Instead, I grabbed my ankle and screamed that I needed his help getting to safety. We were in his reality, but I shifted it in a way that accomplished my goal of making sure he was safe.

Sometimes the story will involve an accusation against you. You stole $200 from my purse. You’re cheating on me. You’re lying about everything because you want to put me away. It would be easy to get offended or hurt. Don’t. Maybe you’ll need to step out of the room for a moment to cry or rage or take some deep breaths, but do what you need to do so that you can respond to  accusation without emotional engagement.

Whether the accusation is against you or someone else, place yourself on your loved one’s team by assuring him or her that you’ll work to get to the bottom of what’s happened. If the complaint is that you’re lying, you might explain that perhaps you understand things differently, but you would never knowingly tell them anything that’s untrue. Remind the person you love that you do love them and that you’re in this together.

Distraction may be another useful tool. After I got my dad inside and away from what he saw as a Nazi invasion, we had lunch (I pointed out the window when no cars were passing and showed him that the immediate danger had passed, so we needed to eat per the military scheduled) and shifted to other activities afterward.

As is always true with dementia, these suggestions won’t be successful every time you try them. Some days, none of them will work and you’ll have to weather a continuous focus on the false story. Keep trying, if the story is upsetting, and in time you’ll hit on something that will shift your loved one’s attention.

Life persists despite devastation.

Life persists despite devastation.

The Mullen fire ravaged the wilderness along the border between southeastern Wyoming and northern Colorado in the summer of 2020. Smoke covered southeastern Wyoming, at times so heavy that Cheyenne’s sky glowed with brownish-orange clouds, creating an eerie midday look.

A few weeks ago, I drove through some of the areas that burned. Instead of forest dotted with clusters of grass and wildflowers, the landscape is now dominated by blackened trees resting on charred ground. 

Even in that bleak, incinerated landscape, life persists: yellow and pink and purple wildflowers peek up from the bare ground, offering a counterpoint to the fire’s devastation. 

Fire savages the vegetation and wildlife, but it can’t stop persistent, resilient life from springing up again afterward.

Life doesn’t stop even after devastating loss.

* * * * *

Last month marked the fourth anniversary of my father’s death from Alzheimer’s and vascular dementia. My grief persists, though it’s changed over the years. 

In the months immediately after his death, my grief was sharp. A memory or a word would cut through my exhaustion that persisted for months after he died, and I would feel lost in and overwhelmed by pain.

Year two was an exciting time for me, as I’d just moved to Wyoming. The sharp grief had mostly subsided, but I could be leveled by something as simple as seeing cranberries in the grocery story, reminding me that my Thanksgiving table would be empty. I’d pick up the phone to call my dad, and my stomach would drop and my eyes water as I’d remember that he had flown past Verizon’s reach. It’s objectively absurd to say that I was surprised he was still dead… but I was.

By the third year after his death, I’d more or less come to terms with his absence. Of course I missed my dad, sometimes acutely. But I’d settled into my new life, and I no longer counted the months since he died, only the years. People reached out on the anniversary of his death, and we shared happy memories.

This year was different, though. I felt the pain of his death almost as acutely as I had in the first year. And yet, only a few friends remembered the anniversary of his death. I felt as if everyone else had moved on with their lives, forgetting my dad in the process.

Grief ebbs and flows, and when it flows — no matter how long it’s been since the loss — it’s devastating. Even the good and rich parts of life feel as if they’ve been incinerated.

Pink flowers among charred trees
Pink flowers among charred trees

When I drove through the fire-scarred Wyoming land a few days after the anniversary of my dad’s death, I was still feeling the tenderness of devastating loss. And then I saw vibrant pink and purple flowers and green leaves growing among charred trees. 

I realized nature’s lesson: no matter the magnitude of the devastation, life persists. Life is tenacious. Life seeks a foothold and grows even when fire’s ravages would make fresh life seem impossible. 

The landscape may be bleak for a time, but the beauty of life will reassert itself if we allow it.

If flowers can teach themselves how to bloom after winter passes, so can you.
Ngor Shirazie

Reflections on the life relinquished to care for a loved one

I decided to go out to lunch today, and as soon as I sat down I started reading Measure of the Heart: A Father’s Alzheimer’s, A Daughter’s Return Home, by Mary Ellen Geist.

The book starts with the author’s very brief recap of leaving a successful career as a journalist to return home and care for her father. The “unkempt hair, no makeup, and a look of exasperation” in her eyes and those of others who’ve done the same. Faces like her mother’s “that seem to say, This shouldn’t be happening to me. I don’t deserve this. This was supposed to be the best time in our lives…” “The daughters whose eyes I meet… Sometimes we look very, very lost. Almost as lost as our parents who have Alzheimer’s.”

And suddenly, I’m thrust back into those feelings, into having given up a career — a business in my case — and professional activities, professional aspirations, friends, my plan to adopt a child, on and on, all those feelings of loss. And that was before things got hard with my dad, when his memory was slipping significantly but he just needed some support.

Now that my beloved Daddy been gone almost 19 months, I still have no desire or energy to restart my business. I hit the brakes when he went into hospice, expecting for it to last a few months, but he lived for two and a half years, and closing out his house took more than a year. Starting again from scratch is a mountain I’m not ready to climb. I’m grateful for the opportunity to run The Purple Sherpa, though I wish the hard work came with a paycheck at times when I’m wondering how I’ll pay my bills — something I never wondered Before. (Something I’m grateful to find a way to answer every month, especially grateful since I know many others aren’t able to answer as easily.) I’ve moved to a home I love, I’m spending time where I want to, I’ve resumed an important professional leadership position that has been a decades-long goal. There’s much good in my life, but it’s unrecognizable compared to what it was and what I thought it would be. And it’s all tinged with loss.

Make no mistake: I would do it all again, every minute. The good, the bad, the hideously ugly.

But reading this has taken me back in time, left me in tears in the middle of a restaurant, tightening my throat too much even to swallow the garlic Parmesan fries I’ve been anticipating for weeks.

This is what people who haven’t been through this experience can never understand.

Self-care when there’s no time for self-care: What do you do when you feel like you’ve lost yourself in caregiving?

Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind The Purple Sherpa and its website, Facebook page, and several Facebook groups. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-dementia-caregiver stress and grief, even stronger because of my friends’ situation.

I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.

And I fantasized for a few couple of minutes during the drive about things I’d love to do. Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.

I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.

Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with me that keeps the endless task list from feeling quite so smothering.

Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than our role as caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of dementia, loved ones quickly lose the ability to remind us. Dementia becomes all-consuming for those who are diagnosed and those who care for them.

Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click here to download our free Comfort for Caregivers guide.