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.
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
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
Have you heard your loved one who’s living with dementia say something like this?
I don’t know what’s wrong with you. I’m perfectly fine.
I don’t need your help. I’m fine.
You’re the one with the problem, not me.
I don’t know why you act like I can’t do anything right.
I don’t know why you’re trying to control me.
I’m perfectly fine. It’s all of you who are trying to confuse me.
I remember just fine, you’re the one who doesn’t know what they’re talking about.
It’s frustrating when someone you love who’s living with dementia insists that they’re fine, that their cognitive abilities are completely intact, and that you’re the one who (choose the argument of the day) can’t do anything right, doesn’t remember how things are supposed to be, keeps insisting there’s a problem when there isn’t one.
Maybe the complaint is laced with suspicion: you’re trying to convince everybody that I’m crazy or you’re trying to confuse me or you’re trying to trip me up.
When you’re the care-partner or caregiver devoting your time and energy to making things go well for the person you love who’s living with dementia, this is an frustrating claim.
I knew that my dad’s dementia had progressed to the point that he couldn’t safely walk alone in our neighborhood. He might get lost or wander off his planned path, or he might not understand that cars don’t always stop at stop signs and step in front of a driver who was in the midst of a rolling stop.
And so I insisted that someone should walk with him. But because he was unaware of the danger that dementia created, he wouldn’t allow anyone to join him on his walks.
I suggested that I could walk a few feet behind him, or we could find someone he’d enjoy in conversation, and his response was like a soundbite stuck on repeat: “Why? There’s nothing wrong with me!”
I could see he needed help, but he wouldn’t admit it. It felt like a stubborn refusal or an aggressively defensive reaction to my attempts to help him.
Until I discovered that he was exhibiting anosognosia, I was incredibly frustrated and even angry that he was denying the truth of his condition.
Anosognosia is defined as the lack of ability to understand and perceive one’s condition.
In the context of dementia, anosognosia means that the person who’s insisting they’re fine truly believes they’re fine: they genuinely can’t see or recognize that their memory or judgment or ability to find the right words has been compromised.
The losses that are apparent to us as family members and care-partners are invisible to the person experiencing anosognosia.
And so what looks like stubbornness is actually a disability.
Another example comes from a member of The Purple Sherpa Basecamp on Facebook. Susan (not her real name) was aghast to discover her husband using a chainsaw to cut a small piece of lumber. When she challenged him, he told her that she was wrong, that he’d been using his tools just fine for years, that she never used them, and that he wasn’t the one with the problem—she was.
Susan couldn’t understand why her handyman husband had suddenly forgotten how to use a chainsaw properly and that he didn’t even know he’d forgotten.
Anosognosia.
And here’s the tricky part about anosognosia: no matter how much evidence you bring to prove that your loved one isn’t perceiving things correctly, there is no chance that you’ll be able to persuade him or her.
Anosognosia will eliminate any possibility that your loved one will even see that there’s a problem. The physical changes in the brain caused by dementia will prevent your loved one from recognizing that there are any changes.
It’s important to realize that, as with so many other symptoms of dementia, anosognosia may come and go over the course of a few days or even a few hours. Someone who agrees he needs help today may insist that you’re trying to put one over on him next week, that he doesn’t need help, that he never agreed to any such thing.
Knowing that your loved one is experiencing anosognosia, not just being stubborn, doesn’t change the experience you’ll have. But it just might help you to feel empathy—and that may change your experience.
If you know why your loved one who needs help is arguing that she’s just fine, you may be able to respond with empathy rather than exasperation.
Empathy can prompt you to look for ways to address the underlying issue with creativity rather than frustration.
For example, if suggesting hiring a daytime caregiver causes your loved one to get upset and swear they don’t need any help, consider telling your loved one that a friend (whom you’ll pay) wants to spend time with them. (And be sure the “friend” shows up in street clothes, not in scrubs or another type of professional caregiver’s uniform.)
If your loved one keeps forgetting to pay the bills but insists that she’s always managed “just fine” and doesn’t need your help, perhaps you could intercept the bills and pay them while leaving your loved one an old checkbook so that she doesn’t feel undercut. (This is a good reason why it’s important to be sure an appropriate person has financial Power of Attorney before it’s needed: when it’s needed, it may be difficult or impossible to get it done because your loved one may lack the legal capacity to grant the Power of Attorney.)
Even leaning into your empathy, you might find it difficult to come up with a creative approach to deal with a problem that anosognosia is preventing your loved one from seeing. A support group can be helpful in this situation, and you’ll likely pick up “been there, done that” advice. (If you’re on Facebook, check out The Purple Sherpa Basecamp, which is open exclusively to dementia family care-partners and caregivers.)
And on occasion, when safety is at stake, you may have to muscle through an anosognosia-based objection to help rather than seeking a clever way around it.
How have you handled situations when your loved one claims not to have any problems when you know that isn’t the case?
That question is often on my mind, especially when a member of ouronline support group The Purple Sherpa Basecampshares that their loved one wants to gohomebecause they don’t recognize they’re living in the place that’s been home for them, sometimes for many years.
While caring for my dad through his years living with Alzheimer’s and vascular dementia, I learned that cognitive changes made it less and less possible for him to adapt to anything new.
My dad, an engineer in his first career and one of the first lawyers in Georgia to use a computer in a courtroom, was completely unable to use a new cellphone even though it was almost identical to the old one he’d mastered. When I moved coffee cups from one cabinet to another, it was as if they had simply ceased to exist because he wouldn’t look anywhere except in the old spot. He was livid upon discovering (repeatedly) that they’d been moved.
His brain simply couldn’t adapt to these or other changes. I told him the new cellphone was broken, and I put the coffee cups back where they belonged.
I learned that his brain was losing the flexibility to adapt to any kind of change, and so I had to adapt instead.
And that flexibility is what my dad, and others who are living with dementia, are missing when they realize or believe that they’re no longer at home and they want to go back there.
When surroundings are different, or when cognitive decline makes them seem different, the brain can’t pick up on cues that this new (or seemingly new) place is still safe, still secure, still containing familiar items. The brain simply can’t adapt to a new living circumstance, whether that’s physical location or how the days pass. The person who’s living with dementia becomes unmoored from current-day home and wants to return to feeling that familiarity and security. And when the brain is unable to find that feeling, the person living with dementia begs to go home.
So how might we think about the request to go home? Again,from my blog:
Here’s what I think: I think home means familiarity, security, safety.
It means knowing how to navigate from one room to the other, being able to pop into the kitchen and whip up dinner or a cup of coffee.
It means knowing how things work, from the light switches to the doorknobs, and knowing where to find what you need—a sweater, a pen, your own history.
For some people, it’s about the sense of comfort that a beloved spouse or parent or sibling brings. Or brought.
Perhaps for others, it’s solitude, being independent. Getting to decide what to do and when, without interference from anyone else, no matter how well-intended their input might be. In some instances, home may mean a physical place at a particular point in time, but I suspect that even when that’s true, it still isn’t about the house; instead, it’s about the feelings that the house represents.
When I was caring for my dad, I worked to surround him with things that once had meaning for him. Sometimes the meaning lingered and sometimes not.
My dad loved the Georgia Tech Yellow Jackets, so I stocked the kitchen with cups and mugs that displayed the Yellow Jacket logo. I bought him Yellow Jacket t-shirts and throw pillows. Sometimes our home looked like a tailgate party gone awry with all the Georgia Tech merchandise, but I found that it helped to orient my dad to something that mattered for him.
Even though my dad seemed to forget about my mom (who had died about 8 years before he was diagnosed with Alzheimer’s), I could tell that he recognized her photo, so I kept plenty around. Once, late into dementia, he even pointed to a wedding photo and said, “She was my person.” He couldn’t tell me anything about her or their marriage with words, but the look in his eyes told me that seeing the photos was an anchor for something important that he knew on a level deeper than words.
I tried lots of other things to help my dad recognize that he was safe, among people who knew him and loved him, where he could be comfortable: music, art, knick-knacks, even toys from my own childhood that he’d used during our playtime.
Like anything else with dementia, sometimes these cues connected for him, and sometimes they didn’t. But I think the message landed: he was home.
How can you bring elements that represent safety, security, comfort, and history into your loved one’s space? What do you think they’d say if asked to answer the question, what is home for you? Let that guide you.
Until people understand that Alzheimer’s and related forms of dementia are not just about grandma forgetting things more often than she used to…
Until people understand that early-onset Alzheimer’s affects millions of people under age 60 (often in their 40s and 50s)…
Until people understand that dementia causes death of successive parts of the brain, affecting the ability to walk, speak, swallow, and eventually causing physical death….
Until people understand that Alzheimer’s is the only leading cause of death with no cure, no scientifically proven method of prevention, and no treatment that is universally effective…
Until people understand that millions of their friends and family members are forced to quit working to care for a loved one, putting their own future at great financial risk…
Until people understand that a lack of societal and governmental support means that many who have dementia are forced to fight tooth and nail to be able to live well despite the disease and that far too many people lose that fight…
Until these things change, Alzheimer’s and other related forms of dementia will remain misunderstood and underfunded. It’s up to us to raise dementia awareness.
Whenever I post something on Facebook that references the existence of beauty or joy or any kind of gift in dementia or dementia care, there’s always pushback. “There’s no beauty in dementia! Dementia is ugly and brutal and there’s no good anywhere in it. Dementia tortures the person affected and the caregiver.” One person recently even stated that a family member who died with dementia was “crucified.”
There’s no denying that dementia is ugly. No one has ever said, wouldn’t it be great to experience the beauty that is dementia…. no one.
But I would argue that there is beauty and joy and laughter and other forms of goodness that exist despite dementia.
Early on, before dementia has taken a significant toll, I would suggest that to a large degree, we the care-partners and caregivers along with the person who’s living with dementia have a dramatic ability to affect the degree of goodness we experience. A recent and controversial article in The New York Times suggested “changing the tragedy narrative” of dementia by focusing on the good that exists for as long as possible. There’s an opportunity for gentle humor and much of the goodness of ordinary life because although the person living with dementia experiences some deficits, their impact on overall quality of life is not devastating. In fact, this is an important aspect of advocacy since the common understanding of an uninformed public is that a person who is living with dementia goes from healthy to entirely impaired almost immediately — something those of us who interact with people living with dementia know.
But what about later in dementia’s progression? Unpleasant symptoms of brain death caused by dementia abound. Inability to communicate as clearly (or perhaps not at all), incontinence, hallucinations, paranoia, personality changes, and more are frequent. Where’s the beauty in that list? The joy?
it would be naive, even offensive, to downplay the difficult, uncomfortable, frightening aspects of dementia. And it’s true that as dementia progresses, the good days get to be shorter and fewer. Every person experiences dementia somewhat differently, and some people undoubtedly experience the worst dementia has to offer on an ongoing basis. For most people, though, moments of beauty and joy and connection are possible. Here’s what those moments look like…
A smile or laugh
A look or words of recognition when the person living with dementia has forgotten a name or relationship
A cogent comment out of the blue
Expressions of love, verbal or non-verbal
Interest in an activity when none previously existed
As dementia progresses, the key is to watch for and/or to create moments of joy and beauty. In fact, one book The Purple Sherpa recommends is titled Creating Moments of Joy for the Person With Alzherimer’s Or Dementia. As dementia progresses, these moment may become less and less common and they may last for shorter periods of time… But if we watch carefully, we will most likely see these moments, at least occasionally. And if we do not believe that such moments are possible, we surely won’t see them.
Author: Julie Fleming Julie provided love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011
with vascular dementia in 2014 until he died in 2017. She had to learn it all the hard way. Sound familiar?
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