I see one comment on The Purple Sherpa’s Facebook page more than any other. It makes me chuckle and then shake my head in recognition. It’s the same response I had with advice that seemed so simple while I was reading or hearing it and so difficult, even impossible, as I tried the suggestion…
Easier said than done!
And, of course, that’s true. It’s always true.
Saying I’m going to make a peanut butter sandwich is easier than doing it. Saying I’m going to look for a new job? Leagues easier than updating my resume, deciding what jobs I’d like to apply for, searching the job listings, setting up searches, having lunch with people who might be able to make an introduction — well, you get the idea.
No matter what I say I’m going to do, the saying is always easier than the doing.
Doing something with the intention of affecting another person’s behavior or mood is advanced-level easier said than done. I have to know exactly what to do and how to do it. That’s hard enough… But then comes the real wild card of the other person’s response.
Even advice that anticipates a range of responses can’t identify every possible outcome. Add in the reality that dementia-related suggestions are intended to cause a response from someone whose brain is not functioning at full capacity… You’re pretty much on your own in figuring out how to handle the response unless it’s the 1% of the time when the response is exactly what’s predicted.
And so we receive advice, whether from an expert or a peer, roll our eyes, and think or say, Yeah, sure… That’s easier said than done. And we’re right. Period. End of story.
But “easier said than done” is also your brain’s way of moderating the disappointment you might feel if you try the advice and it doesn’t work.
Your brain wants to protect you. It knows that there’s every chance that the advice won’t work, or it won’t work quite the way it’s supposed to, or it won’t work consistently.
Your brain doesn’t want you to be disappointed yet again, and so it dishes up easier said than done as a way to protect you.
You’re still stuck with whatever you might try to change with the suggestion, but you already know that circumstance and you’ve already had your own response to it. That’s hard enough to handle. Easier said than done keeps you, maybe, from feeling more disappointment or frustration (insert your go-to negative response here) on top of that.
Let’s face it: sometimes you’re so depleted that you’d rather cope with an undesirable situation than try to change it. That’s the human experience. Surely I’m not the only one who’s ever thought I really want to lose weight while digging into a bag of chips after dinner.
It’s the same thing in dementia care, though we may not be able to see it as clearly. It’s easier to discount the advice from the beginning. And sometimes, that’s ok. Acknowledging that you don’t have the oomph to do the thing right now leaves mental breadcrumbs so that when you have more reserves, you can return to the idea and engage with it.
Here’s how to prepare yourself when you do have sufficient emotional reserves to try something new.
First, make sure there’s at least a part of you that thinks the advice is valid and might make a positive difference. If your loved one isn’t responding when you ask a question, you know that yelling at them in anger is not going to make a positive difference, so you’d reject that advice. But advice to kneel in front of them (or sit or bend over), to make sure they see you, then touch their arm while repeating the question? That just might work. It isn’t guaranteed, but it’s possible.
Consider whether there’s a significant chance of a strong negative outcome, such as provoking a catastrophic reaction in which your loved one gets upset or angry completely out of measure what whatever you’re trying. If so, maybe the likelihood of a negative reaction outweighs the potential of the benefit the advice offers.
Next, game out where you think the advice might fall apart for your situation. Has dementia advanced to the point that your loved one doesn’t understand what you’re saying most of the time? If so, repeating the question probably won’t work even if you add physical actions to be sure your loved is paying attention to you. Instead, maybe you demonstrate the question instead. Instead of asking, “do you want a cookie,” you might hold out a cookie. Or you might take a bite of a cookie, then hold it out to your loved one. See what could possibly work, what very likely won’t work, and how to adjust the advice accordingly.
Finally, remind yourself that it’s ok if it doesn’t work. Nothing ventured, nothing gained — it’s a cliché because it’s often true. Assuming you won’t make things worse with whatever you’re trying, the risk of not trying is that things stay the same.
Next time you see advice and think, Yep. Easier said than done… Thank your brain for trying to protect you. Decide how much protection you need right now. If you’re good to try, see it as an experiment, anticipate any negatives outcomes you can and decide how to handle them, and then give it a try. And if your effort doesn’t work right away, consider adding it to your library of ideas for future reference.
Easier said than done? You bet. But don’t let that true statement stop you from trying ideas that might just improve your and your loved one’s lives.
Reminder: There are no perfect caregivers. We all make mistakes. I share my story to help others avoid the mistakes I made in caring for my father.
I left my marriage in 2010. Weekly business trips left me without time or energy to find a new living arrangement, so I deposited my belongings with Dad and began using his house as my home base. I felt wobbly as I moved toward divorce, and I couldn’t imagine that anywhere else could feel safer or more comforting.
Home Again, but…
I soon discovered that Dad had developed some new and surprising behaviors. When Dad took my list to the grocery store, he’d return with strange substitutions. Couldn’t find green beans, so I bought cheddar cheese instead. In the past, he would have visited multiple grocery stores rather than come home without a specifically requested common item; thirty years of marriage to Mom had taught him that behavior. He would have avoided random substitutions rather than provoking Mom’s displeasure. Now when I handed Dad a list, I couldn’t guess what he might bring home.
But Mom had died nearly ten years earlier and Dad had adjusted to single life. I let myself believe that Dad bought what he wanted to eat despite the list I gave him. Passive aggressive but plausible, right? I sometimes wondered if he simply forgot to pick up an item—really, the grocery store with the huge meat department didn’t have any ground beef at all?—but I felt annoyed, not alarmed. With the benefit of hindsight, of course, I understand that these grocery store fails were early signs of dementia.
Clinging to My Blindfold
In the spring of 2011, Dad started feeling terrible pain from what he thought was a hernia. I didn’t ask much. As far as I knew, Dad could manage his medical care; I could barely handle managing my work life and snuggling my beloved dogs while reeling from an ugly divorce.
Dad and I decided to go out to lunch on the day of his doctor’s appointment to get the pain checked out. I answered emails in the waiting room while Dad saw his doctor. After about twenty minutes, Dad walked into the waiting room, his face relaxed with relief. Hernia confirmed; surgery scheduled for a few weeks away; pain management tips delivered for the interim. I didn’t ask Dad for details about his conversation with his doctor or the medication schedule he’d been given. Why would I?
By this time, Dad’s odd behavior had expanded beyond questionable grocery shopping: he forgot my birthday, forgot he’d promised to pick me up at the airport even though he’d dropped me off there for a business trip, mixed up my dogs’ names and called my cat a dog—a joke, he said, though I found it peculiar, not funny. Several weeks of normal life separated these surprising events. I didn’t force myself to consider whether these changes were significant, though fear covered me like a rash every time something strange happened. I suspected something was wrong, but I chose willful blindness. My life had fallen apart and I needed Dad to be stable, not a new source of chaos.
The Hospital
A couple of weeks after Dad’s medical appointment, I returned from Saturday brunch with friends and found him in bed at noon. He was confused, slurring his words and telling me that he’d tried to get up but had fallen. I felt what would soon become a familiar sense of foreboding. Something was wrong. Something I couldn’t quite put my finger on. Something big. I knelt by Dad’s bed and assured him in a sing-song, placating voice that everything would be fine while I did a quick search on my iPhone for signs of a stroke.
Dad underwent a few hours of testing in the emergency room before confiding in me that he wondered if Dr. J’s instructions to manage the pain could have been the problem. According to Dad, Dr. J told him to take as much aspirin as he needed, and he’d taken ten or more tablets a day. Dad had somehow connected the dots and realized that he likely had a bleeding ulcer, though he couldn’t call up the word ulcer. Sure enough, he was right, and doctors confirmed that the pain management directions Dad had followed caused it.
I intuitively knew that the error was Dad’s. If I hadn’t, I would have followed up with Dr. J to question the directions he’d given Dad. I would have asked why he didn’t warn Dad about the risk of an ulcer. I probably would have urged Dad to find a new doctor. But I didn’t. I couldn’t admit it yet, but I knew Dad was at fault, not Dr. J, and I knew that I was seeing a dangerous manifestation of a much bigger problem. I could no longer wear the blindfold that I’d slipped on months earlier.
Enter the FBI
Dad went from the ER to ICU for a few days and then to a private room. The first night in the private room, he refused to stay in bed. He believed that the FBI had kidnapped him from his Atlanta home to Virginia and that he needed to escape. A nurse called me just after midnight to let me know about that delusion, and I rushed back to the hospital to sit up with Dad all night. Dad either didn’t recognize me or believed that I was helping the FBI. We sat in an uneasy silence all night, Dad pretending to nap, me pretending to read as I felt his resentful glare.
In the morning, bright sunshine beamed into the room through a south-facing window and Dad laughed and chatted with me, himself again. I saw no hint of the FBI delusion. I cornered the hospitalist before he entered Dad’s room to ask what was happening, feeling a cold ball of fear in my gut that I might hear the word Alzheimer’s or dementia. Instead, the hospitalist explained that Dad likely had an episode of ICU delirium, which can cause confusion, delusions, agitation, and other symptoms. I knew ICU delirium wouldn’t explain Dad’s strange behavior at home, but I didn’t press the question.
The Cost of Intentional Ignorance
I just wanted Dad to be ok, to be the steady force he’d been throughout my life. Even though I didn’t fully believe the hospitalist’s explanation, I chose to stay ignorant rather than to dig beyond asking meekly, Are you sure it’s just delirium? That decision resulted in nearly six months of increasingly frightening confusion before Dad was finally diagnosed with Alzheimer’s.
Reader, I do not recommend intentional ignorance. Not knowing is more comfortable than hearing a game-changing diagnosis like Alzheimer’s or Lewy Body Dementia or FTD, but it delays treatment. Many of the available medications are most effective (or only effective) in the early stages of dementia. Choosing not to know the truth only delays diagnosis and potential treatment. I don’t think my fear delayed treatment long enough that Dad’s progression would have been slower, but I’ll never know for sure.
Intentional ignorance was the first of my many mistakes as a caregiver.
Learn from one woman’s emotional story about denying early signs of dementia and the importance of early diagnosis and intervention.
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
My father was diagnosed with Alzheimer’s Disease after a weeks-long process that involved a physical exam, blood work, a brain scan, a spinal tap, and neuropsychological testing.
He went through the process only because I asked him to, not because he was concerned.Many months later, I found stacks of handwritten notes that he’d made to remind himself of ordinary tasks such as how to print a document from his computer to the names of key people in his life, including my mother, to whom he’d been married for 43 years when she died.
After the testing was complete, we met with the neurologist on a sunny, warm Wednesday afternoon in a windowless office tucked deep inside a geriatric hospital.
The doctor, a nice and efficient young man with long hair held in a ponytail with an elastic band, smiled as we sat down. My dad was relaxed. I was tense.
Dr. Hales went straight to the point. “After all of the testing we’ve done, there’s no question that you have Alzheimer’s Disease. We can’t give an absolute diagnosis without dissecting your brain, but we found beta-amyloid proteins in your spinal fluid, and that’s the next best thing. All of the evidence is consistent.”
I glanced at my dad as Dr. Hale’s voice morphed into a background drone. His posture hadn’t changed: his face was open and somewhat impassive, just listening as the doctor passed his sentence.
I felt something in my hand as I looked at my dad, and I saw that Dr. Hales had handed me some tissues. That’s when I realized that I was crying.
The smell of the tissues reminded me of my grandmother. My mother’s mother, who also had Alzheimer’s. My grandmother had fearlessly traveled the world, was in Hanoi when it fell, was always in charge of her business affairs and her church committees and her women’s clubs. But she turned into an angry woman who escaped her caregiver, running out of her home into a Texas winter night, wearing only a thin nightgown. She turned into someone I didn’t recognize, someone who didn’t speak, didn’t even look at me. Someone who lost the ability to care for herself, who was losing the ability to swallow food and drink when she mercifully died from a heart attack.
Shaking my head to clear my grandmother’s story from my mind, I decided that my dad’s story would be different, that I would do whatever it took to keep him from experiencing the kind of decline she did. And I intentionally dismissed the memory of how my mother became haggard and exhausted as she cared for my grandmother, even though my grandmother lived in a nursing home. That, I vowed, would not be either of us.
We left the doctor’s office without being given any concrete advice or even an information sheet about Alzheimer’s. Only a prescription for some medication that Dr. Hales suggested might help, at least for a while, and a direction to return in six months.
We returned to the parking lot as I struggled to hold back my tears. I decided to let my dad lead the conversation, but he asked only where I wanted to go to dinner.
Though I had no appetite, I craved something familiar. I suggested we go to the club where my dad had been a member since I was a young child. Where, like Cheers, everybody knew our name.
As we drove toward the club, I realized that I would need to learn about this unwelcoming future awaiting my dad. I wanted no part of it: not the disease, not the learning about it, not the living through it. We were hurtling forward into something neither of us had expected.
But we had no choice.
Looking back, I want to wrap my arms around the me who swallowed tears that evening along with dinner and offer some comfort. Yes, the future feels grim. As afraid as you are now, you’re also naive. You have no idea of what’s coming—the joy or the pain. Yes, that’s true.
Yes, as hard as it is to accept, dementia will take the man who’s always been your bedrock.
When you’re caring for a loved one who’s living with dementia, it’s easy to see what’s wrong. What’s frustrating, irritating, painful. What causes grief. What prompts resentment. The moment when guilt arises.
During some of the harder phases of my seven or so years of caring for my dad, bad days started bad and just got worse.
I’d wake up exhausted, again.
I’d make coffee, but I’d need to tend to my dad and wouldn’t have a chance to drink that desperately needed coffee until it was cold.
Tired, uncaffeinated, grumpy about whatever minor interruption had taken place, I’d stub my toe. Or bang my elbow against a doorframe. Or I’d be hurrying, and I’d trip over my dad’s cane.
That just confirmed what I already knew: the whole day was shot.
And sure enough, the day that started off on the wrong foot would just get worse and worse, until I’d find myself falling into bed already dreading the next day.
That wasn’t always how my days went, but when I had one of those days, it seemed to kick off a cycle—quite possibly because when I’d wake up the next morning, I’d already be alert and watching for a sign that yep, it was going to be another bad day.
At some point, a couple of years into active caregiving, I began to notice that how I was feeling would affect how my dad and I interacted.
If I was irritable, even if I tried to cover it, he’d pick up on my irritation and mirror it back to me.
If I was grieving, fighting back tears, he would soften, become solemn, and physically droop like a flower deprived of water.
And if I was having a good day, if I came into his room humming and smiling and ready to play, he’d meet that mood as well. Not always, but often enough that I noticed.
Having spent my twenties and thirties watching Oprahand then later studying positive psychology as a part of a coaching certification program, I knew that research had shown that a gratitude practice could improve resilience, physical and psychological health, enhance empathy, and more.
And so I decided to try an experiment, in which I’d list five things I was grateful for before even getting out of bed. My hope was that by starting with gratitude, I’d avoid encountering the negative first thing in the morning, and I might even build up a reserve of goodness to combat whatever difficulty might come my way.
Some days, gratitude came easy. I could rejoice that a friend had brought us dinner the night before, that my dad called my by name, that my favorite rosebush was blooming.
On other days, I had to stretch to find five things I could be grateful for. I had to resort to things that I routinely take for granted and, without this practice, wouldn’t pause to be grateful for them. That the sun had risen. That I could sleep in a warm, comfortable bed. For the soft, flickering of a candle.
As I went through this experiment, I discovered that whether my gratitudes were of the more dramatic kind or noting the day-to-day pleasures that I might otherwise have missed, my mood lifted. I was aware that even on the hardest days, I could find something to be grateful for.
I was more likely to hum—especially if my gratitudes had included the joy of music. I was slower to get frustrated.
And because of that magical, mystical energetic mirroring that I’d observed between my mood and my dad’s, when I felt better, he would often interact with me differently, in ways that felt better for both of us.
This gratitude practice was so powerful and became so engrained in me that I continue it even now, nearly four years after my dad’s death.
Each week, I host The Purple Sherpa Family Gathering as Facebook Live, and I always start by inviting participants to list five things (or at least one) that they’re grateful for.
Because when we know we’re going to have to list our gratitudes, we’re more likely to look for what’s good.
And when we look, we find.
When we see the good, we realize that no matter how difficult the days may be, even the bad days have good in them.
My invitation to you: right now (really, right now!) grab a pen and a piece of paper or open a notes app on your phone and list five things you’re grateful for today.
Don’t make this hard. Gratitude doesn’t require your heart to crack open with emotion. Just look for what’s good in your life in this moment, and write it down.
Then do it again tomorrow. And the next day, and the next.
Notice what happens: how you feel, how you and your loved one interact. Watch for subtle shifts.
After sharing this practice with hundreds of dementia family care-partners and caregivers, I’m comfortable predicting that if you consistently seek and identify your gratitude, you’ll feel better and you’ll see improved interactions with your loved one, whether that means a better connection despite garbled verbal communication or experiencing that moment of connection when a brief glance conveys the love you share.
This practice won’t change the course of your loved one’s dementia, but it just might change the way that you both experience the journey.
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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