Dementia

By Brian LeBlanc

“Parting is such sweet sorrow.” I believe that was our good friend, Mr. Bill Shakespeare. 

You might be inclined to think this is another blog about death. We talk about it a lot. It’s a very real thing that will someday happen as a direct (or indirect) result of my Alzheimer’s disease and vascular dementia. 

But this is not about that. It’s not even about saying goodbye to a loved one – as we’ve also discussed. It’s about saying goodbye to a beloved thing. 

I will not be returning to Disney World. 

Make no mistake, I looooooooovveeee Disney World! Still do! I’ve been going there since 1976. It’s not just a place for kids. It’s a happy place, my happy place. In a world that can be so nasty – and, believe me, I have a lifetime of nasty experiences beyond the health issues you know – Disney has been my escape from it all.

So here it is. We came back from Disney in late April. (Maureen, my life partner/care partner, had to remind me when that was.) I even wrote a blog and we did some other content for #WeAreDementiaStrong about how awesome the trip was – which it was … until my dementia had something to say about it.

Maybe there was a bit of denial. Maybe I just wasn’t ready to talk about it. 

So What Happened? Alzheimer’s Disease Crashed the Party. That’s What.

To recap, Maureen and I were at Disney with our 4-year-old granddaughter, Emma, and some friends from New York City. We were having a rip-snortin’ good time – visiting the Magic Kingdom and bouncing around a few other places in the sprawling wonderland.

Emma was so cute, so precious. Seeing Disney through the eyes of a child brings you back to your own childhood in a very unique, sentimental way. Like you’re a kid again, but you don’t remember thinking as a kid, but the feelings of being a kid are still fresh like the scent of an apple pie cooling on a window sill. 

Emma alone made the trip worthwhile. I’ll always believe that … even when I forget that I’ll always believe it.

But I began noticing something odd on Day 1. I’m always the leader at Disney. For decades, I’ve roamed and explored rides and attractions new and old. My dementia mind somehow retained a treasure map of fun destinations and experiences. I often gave directions to folks in need, and I would joke, “I wonder if they realize they just got directions from someone living with dementia.”

I never steered them wrong, though. I had been proud that, even as other memories regressed, Disney remained imprinted on me like a tattoo. Yet, the last trip something was off. Memories of familiar spots and favored rides stayed out of focus … or nonexistent.

And then we got lunch the second day. I went to use the restroom. I emerged. I had no idea where I was. Not a clue! I looked around, trying to get my bearings, trying to find something that looked familiar. The signs were gibberish. Not a familiar or friendly face in the crowd. It felt like hours had passed.

From what I remember, I was stricken with a huge, huge panic attack. That’s when our friend saw me walking around like I didn’t know what I was doing, because I truly didn’t. She came and brought me back to our table.  

Now, Maureen was in line getting food. She saw me. She saw that I was disoriented. But we we’re talking seconds, not even minutes, and our friend was already standing behind me. Maureen didn’t abandon me, not that I ever feared she would. (She thinks I’m too handsome to leave me. Ha!)

But the shock of it all. The panic never subsided. My legs were like Jell-O. Next thing I knew – and I still remember very little of this – some Disney staff wanted to get me on a stretcher to haul me out of there. I refused, opting for a wheelchair instead. They were so kind. And I have to thank Disney wholeheartedly for getting us in a car and personally driving us back to the hotel, which is above and beyond what anyone might expect.

Decision-Making with Dementia

But, as I said, I won’t be going back. That’s a decision I’ve had to make, and it’s my decision alone. It’s a truly magical place, but that just magic isn’t enough anymore to put my loved ones through it. It’s too hard, and it’s getting potentially dangerous.

I don’t want to put myself into another episode like that. I still have so much love for Disney World, but being there, being amongst thousands of people, is just too much. (Maybe we’ll manage to sneak back one last time when my dementia is in its final stages, with no ability to wander, when the castle may spark a smile as something familiar and happy.)  

I’ve always been the one to initiate these life decisions. I decided to surrender my driver’s license. I agreed to allow Maureen to have control of the finances. That’s the mark of an ideal care-partner relationship. Not a lot of persons living with dementia have a care partner that would do that. Usually it’s a fight. And I pray, as you or your loved one walk this path with dementia, that you find some trusted, loving soul to pick up the slack where you begin to lack.

But you know me, I’m always looking at the bright side. It’s not an end, but another beginning. Now we get to try other more appropriate things we all can enjoy safely. As I always say, “I may have dementia, but dementia doesn’t have me!” And we definitely have more important dementia-advocacy work ahead.

Peace

-B

First and foremost, we refuse to get political here. Caregiver Support and Resources and our nonprofit partner #WeAreDementiaStrong exist to support individuals and families across the political spectrum. Whether you’re Ridin’ with Biden or on the Trump Train, you’re entitled to great love, care and dignity in life’s later stages, in good health and bad. 

We all deserve a life worth living.  

But we’re called to address claims – many of them political – that President Biden is showing signs of dementia. President Trump, too, faced similar judgments before, during and after office. Is there merit to such observations? Frankly, to the unbiased, both men have at times shown moments of cognitive decline and jumbled speech. Some have focused on Biden’s walking gait as a common dementia calling card. Others analyzed Trump’s choppy speaking style, apparent lack of empathy and facial cues as evidence of frontotemporal dementia. 

These remain amateur observations mostly. And in the heat of politics, even well-meaning people can lose sight of the fact that Trump and Biden are the oldest presidents ever. Might their apparent symptoms be understandably attributed to the steady march of time? 

The reality is, unless you’re the president’s personal physician or neurologist, you don’t know.

For the sake of fairness and sensitivity – for everyone – let’s tone down the armchair diagnoses. World leaders will never hear the hurtful words of average citizens, but the loved one living with dementia in the armchair next to you will. 

Political Dementia Rhetoric Only Worsens the Stigma 

“The President has dementia and is unfit to hold office” is damaging rhetoric. Yet, however we lean, people sometimes feel justified in freely spewing such ignorance. It’s easy to understand the reasoning. The mental state of world leaders feels like our business. 

• “Is he cognitively equipped to tackle the world’s most complex financial issues?”
• “Is she emotionally prepared to face pressure-packed diplomacy and war?”
• “Should he have access to the nuclear codes?”

So people look for reasons not to trust them. If they flub up a speech or misremember a name on TV in front of millions of people, they’re deemed “unfit.” The thinking is ageist, at best, and insensitive to the millions living with Alzheimer’s disease and other types of dementia today.

So many think they know the signs and behaviors. Do they? Could they recognize repetitive speech or forgetfulness as common signs versus an otherwise healthy person who experiences the same things with general aging? Is a disagreeable political decision an error in judgment that must point to dementia? 

Of course not! And unless you’re a neurologist or political scientist, most couldn’t begin to understand the limitless complexities of the brain, much less the inner workings of national and international governance.

Dementia … On a Personal Level

Meanwhile, our loved ones who do live with dementia hear all this. The unhealthy talk flows through communities, through social media, and in a flash, fills conversations at our dinner tables, bars, workplaces and even houses of worship.

Our loved ones who live with dementia hear it and see it themselves. My life partner/care partner, Brian LeBlanc, who lives with Alzheimer’s and vascular dementia, often feels alone and alienated enough without the most powerful office in the world speaking for his daily realities. He joins millions of others questioning, “WHY?”

• “Why doesn’t anyone call anymore?”
• “Why do I feel so useless?”
• “Why me?”

Those are deep, dark questions. They’re darker still when one understands that memory loss, feelings of futility and loneliness may be the least of concerns when faced with night terrors, hallucinations and other symptoms beyond surface-level confusion. After all, dementia is so much more than memory loss. 

Folks who already don’t want to be labeled and defined by their conditions can’t escape the labels and definitions dominating talk almost everywhere around them. If you openly join this conversation, you’re only perpetuating the stigma around dementia and hurting the ones you love most. Is there anything “less worthy” about your 75-year-old aunt who’s simply forgetful or your 53-year-old dad who’s well into the grips of Alzheimer’s?

‘Let’s Change the Dementia Narrative’

Does President Biden have Alzheimer’s or another type of dementia? Who knows? Maybe. I’m not his doctor. There’s a distinct possibility President Trump has it, and we know President Reagan did. Whether they do or don’t, did or didn’t, they each carry a heroic stature for wide swaths of the American population. 

Heck, some consider Reagan the greatest president ever. Others don’t. Point is, if you know one person with dementia, you know one person with dementia – regardless if they hold the most highly publicized and scrutinized office on Earth. Don’t let a person who holds the office for a few trips around the Sun own the dialog around Alzheimer’s and dementia for countless years to come.

Brian calls on us to “Change the Narrative.” Allowing a stigma around dementia makes it something people – lawmakers and other decision-makers included – tend to avoid rather than help and support through more funding, research and advocacy. We’ve fought too hard to let that happen.