Getting the Diagnosis

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

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

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?

    How do we create a sense of home for someone who’s living with dementia?

    How do you know when you’re home?

    That question is often on my mind, especially when a member of our online support group The Purple Sherpa Basecamp shares that their loved one wants to go home because they don’t recognize they’re living in the place that’s been home for them, sometimes for many years.

    Here’s what I recently wrote on my personal blog about this situation:

    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.

    When can we stop working to raise dementia awareness?

    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.