How to Move Past the One Common Reaction that Undermines Dementia Care

by | Dec 2, 2025 | Dementia | 0 comments

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.

Denying Dementia Signs: The Truth I Refused to See

by | Nov 18, 2025 | Dementia, Diagnosed | 2 comments

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

Young woman wearing a blindfold made of flowers

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.

Getting the Diagnosis

by | Jul 6, 2021 | Diagnosed | 0 comments

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.

Yes, despite it all, you will survive.

Gratitude and Dementia Care

by | Jun 8, 2021 | Caregivers | 0 comments

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 Oprah and 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.

When your loved one doesn’t (in fact, can’t) recognize they’re cognitively impaired

When your loved one doesn’t (in fact, can’t) recognize they’re cognitively impaired

by | May 14, 2021 | Dementia | 2 comments

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?