Joy of Dementia: The Path to a Life Worth Living

By Brian LeBlanc

Today we’re doing a little happy dance because we’re talking about the joy of dementia. Yup, you read us right (and you can hear us right on this very topic in our latest podcast). 

Maureen and I have been on this joy of dementia kick since returning from the Pioneering a New Culture of Aging Conference last month. One of my presentations alongside our friends at the Reimagining Dementia Coalition was titled “The Joy of Dementia (You’ve Gotta Be Kidding!)” 

One could be forgiven for believing only the latter half of that title. But it’s not a joke. No one’s kidding. You can and SHOULD strive for a life worth living with dementia.  

We’re uncovering so many ways to find this joy. (There’s a lot to unpack here, so have a snack ready while reading this!)

The Joy of Dementia (You’ve Gotta Be Kidding)

This isn’t so much about what the Pioneer Network Conference presentation was, but how we can strive for all this. We’ve borrowed a quote from Marianne Williamson: The joy of dementia is acceptance, which allows us to feel joy. “Joy is what happens to us when we allow ourselves to recognize how things really are.”

So poignant. So important to know. So important to understand. 

Acceptance.

Accepting Dementia … On Your Terms

The first step is accepting a loved one or yourself living with dementia. Just accepting it. Not trying to change it. Not trying to predict the outcomes. Not trying to force anything to happen a certain way, or not happen a certain way.

Maureen and I say we both live with dementia – in body, mind and soul. My beautiful life partner/care partner can help me and schedules things ’til the cows come home – appointments, meetings, meals, activities, relaxation – but then dementia laughs. 

We’ve accepted that days will be hard and foggy. We’ve accepted we’re only human and that we make mistakes and get frustrated. We’ve accepted that life has a 100% mortality rate – even without dementia.

Most importantly, we’re working daily to always accept that we love each other dearly on this path together. Of course, laughter is always the best medicine. And I’ve now begun making it a point to express gratitude for life’s daily blessings.

Life Isn’t Over

People tend to think of any serious medical diagnosis as a life-ending event. Sure, cancer, diabetes, heart disease, dementia, what have you may be terminal, but you may also live years – decades even – past hearing the terrible news. Yet the underlying sentiment is that life is over or fundamentally changed by a diagnosis, at least the part that’s good or that matters.

Pardon my French here, but the Ragin’ Cajun is about to come out: That’s bull shit.  

I’m still me. I don’t stop being me because I have Alzheimer’s disease and vascular dementia. I don’t stop being me because I have heart issues and diabetes.

There IS LIFE beyond diagnosis. As Maureen says, “At the end you can look back and be grateful for all that you’ve experienced, all that you’ve loved, or you can look back and say, ‘Wow, I really wasted that time.’” Embrace the positive and do what you can to keep it.

Feelin’ Good

We went to the Michael Bublé concert the other night. He’s absolutely one of my favorite artists – the 21st-century Sinatra with a newer-age take on the upbeat, jazzy swing music that we danced to when I wore a younger man’s clothes. My favorite song? “Feelin’ Good!” It’s so positive, uplifting and in-your-face confident! 

It’s basically my anthem. I definitely want it played at any end-of-life celebration that’ll be held long after dementia takes everything (but I’ll still recognize friendly faces and happy music). And when I kick the bucket, “Feelin’ Good” had better be played at whatever wake, service or party Maureen throws (or I’ll haunt her!). 

So let’s focus on finding the joy of dementia through feelin’ good!

We’ve also started going to the gym! It gets the blood pumping. When I get back, I feel … SO … GOOD! My brain feels more clear and aware. We’re getting in the pool, doing yoga, the whole nine yards. At first, I was a bit hesitant – or rather downright against it. It sounded miserable. Something in my brain told me, “No, you’re fine. You don’t need it.” But I haven’t been fine for a long time. 

Exercise is great, whether you’re a person living with dementia or aging in perfect health. You could be fixing health issues you never knew you had – or preventing things that haven’t happened yet.

We’re aiming to sustain this part of the joy of dementia, as well. As Maureen says, “Who wouldn’t be joyful sitting in a hot tub?” (Anyone wanna help with holding us accountable now?)

Joy in Music & Art

Music is just … wonderful. I play it every day, strumming along on my guitar to soothe the nerves. (Have I said this before? Oh, well, it’s that important.) 

It’s not just playing music. Just sitting and listening to my personalized playlist does so much to clear the fog and bring clarity and light to the world. That’s how powerful music and other art forms are, and how it affects the brain.

In Maureen’s career as a Board-certified Patient Advocate, she often plugs music to families as the best medicine and therapy for dementia. Almost 100% of the time, she says, the families refuse to do it. I believe that most families either don’t want to put in the work to develop a playlist – or they lack confidence that their loved one could work a device that plays music. 

Life would be utterly joyless without music. Don’t deprive your loved one of that joy.

Friendly Conversation

Even body language and tone of voice when approaching someone with dementia has an impact. You know what I mean: the hushed tone, the head tilt, the overly exaggerated hint of sympathy. “How are you? Are you doing OK?” 

It’s meant with the best intentions. You ask because you care. But can you see how that undertone only perpetuates the “tragedy narrative” and stigma around dementia. 

It automatically assumes the worst. It assumes that because I have dementia I must not be well. That a person living with dementia must be struggling. That it’s all bad. That my existence is now defined by dementia. And that all this “suffering” must somehow be kept quiet.

Now, I may indeed be struggling that day. I may also be very aware, functional and happy. But as much as my Alzheimer’s makes sure I need reminders, I don’t need that reminder.

Our response to the “tragedy narrative” also has so much to do with the joy of dementia. Should someone approaching a friend living with dementia on the street be corrected or shamed for not knowing? Absolutely not. Should we let it ruin our day? Nope! 

Does It Really Matter?

I’m a VERY social guy. I love telling stories – especially funny ones. If everyone’s laughing, having a good time, enjoying the conversation, does it really matter if I flubbed up a detail?

Before reacting or responding to what a person living with dementia says, ask yourself, “Does it really matter?” Does it matter if I misremember a small part of something? No, and Maureen loves this example from our conversations for this reason.

Now, if we’re at the doctor’s office and I misremember a detail – or go on a tangent about something completely unrelated as I sometimes do – that does matter. And I thank Maureen for being so spot on about my care! (The doctors would probably be treating me for swine flu, if the details were left to me!)

Family Time

You didn’t think I’d forget family, did you? There’s always time for family! Family is the icing on the joy of dementia cake.

We love spending time with our young granddaughter, Emma. And the happy news is we’re going to have another grandchild – another little one to SPOIL! (We’re also going to have a very jealous 4-year-old, but she’ll get used to it. Emma will always be special as our first.) 

Quite often, the family is the inner circle of your care-partner team. They’re the ones taking you to doctor appointments, planning meals and activities, spending quality time, etc. They build new memories – and help you remember old ones while you can. They help bring the joy. 

And we’re proud to call you part of our family. Friends like you help, more than you know, with our joy of dementia.

Peace

-B 

Living With Dementia (and Gratitude)

By Brian LeBlanc

In a world that can be so unfair, so dramatically cruel, so unforgiving, it’s hard to stay in a positive mindset. Even if that’s literally what you do every day – try to channel the happy, the humor, the spice of life. In the back of your mind, there’s always something … something that can, in whatever way, push you off center and make it hard to appreciate life’s true blessings.

I’m living with dementia. You know this. But I’m also trying something new these days. I’m living with and expressing gratitude – every day – even if it hurts to do it. You may have noticed on our Facebook accounts – particularly my page and the #WeAreDementiaStrong page – I’ve been sharing gratitude posts daily. (OK, not every day. I have Alzheimer’s, remember? Forgive me for, uhhmmm, not remembering or being too foggy from time to time!)

But the practice holds true, for so many reasons. Maureen (my beautiful life partner/care partner) and I particularly love the sociology guru Brené Brown, who found in 12 years of research examining thousands of interviews and over 11,000 pieces of data that the most joyful people have one thing in common: GRATITUDE. 

So What Are My Gratitude Posts About? A Life Worth Living With Dementia 

So after a few cups (or a pot) of coffee and some reflection, I prepare a gratitude post. Just to throw it out there. A feeling driven from some experience with dementia often brings me to a powerful realization. Being grateful for the good things we do have has a wonderful way of lighting the darkest paths in life. 

It just feels good. It makes others feel good. 

I’m living with dementia, but thinking about the positives really helps to beat the depression that always seems to slink in. I’ll share a few examples.

Gratitude for Capturing Memories

A person living with Alzheimer’s and vascular dementia being grateful for memories? What’s that called, an oxymoron? 

But it’s true. I’m just capturing them in my own way. 

Photos.

I’m a pretty decent photographer – my marketing background probably just gives me an eye for eye-catching things. But just with an iPhone I’ve been able to capture some of the most remarkable moments. (You’ve probably seen so many photos of the dolphins, snowy egrets and other ocean life right from our back patio overlooking beautiful Tampa Bay.) 

But it’s also the unremarkable moments. The everyday moments. The meals with Maureen, family and friends. The happy times shared in happy places. 

You can see all of the above in real time on our social media. I look through my phone and see them. I remember. And when I can’t remember, they’ll still make me happy. And when I’m gone, they’ll help others remember.

Gratitude for Travel & Experience

Everyone should travel and experience the world. Not everyone gets to do that. Maureen and I are fortunate to be able to travel for business and pleasure. Just last month, we traveled to beautiful Denver to present for We Are Dementia Strong at the Pioneering a New Culture of Aging Conference. 

We’ve been all over Florida – and many states and countries beyond – to humbly receive recognition for our dementia advocacy and education work.

But sometimes the small, unexpected trips around here – perhaps to a winery, a concert, an ice cream shop, or even just a beautiful walk by the bay at sunset –  are most meaningful.

Gratitude for Abilities

Just the other day, I put together an IKEA bookshelf for Maureen’s home office. Unless you’ve looked at easy directions in English and had no idea what they said, it’s hard to truly appreciate such an accomplishment. 

Now, directions for some may be hard to follow in general. Try doing it with dementia. Days of focus and clarity are getting fewer and farther between. Maureen can tell when I need help when my language turns “colorful.”

But that day, I did it! I felt capable again. The ability and knowhow is still there – even if it’s sometimes hard to find it in the fog.  

Gratitude for Music

The benefits of art and music for dementia care have long been documented. They’re better at restoring memory and cognitive skills than any expensive medication or treatment.

Think about it. Music takes us back. It recalls feelings from a first concert, a first dance with that special someone, a father/daughter dance, a smell, a taste, a distinct feeling from a profound moment long forgotten. It fires those dormant neurons!

I play music everyday – usually just strumming on my guitar – in order to keep my anxiousness at bay, to help clear fog, to calm myself when I get upset. It was always such a big part of my life, ever since I first learned to play when I was about 9. 

There’s always a song that can turn your anger to happiness and confusion to clarity. 

Gratitude for Compassion

It’s not easy to be me along this path of Alzheimer’s and vascular dementia. But it’s also not easy to help me along that path.

Caring for anyone living with dementia is no picnic. It takes compassion and understanding. The things that we’re going through, it’s just not my fault. If I can’t remember something, or if I spend the better part of a week on the couch in a fog, it’s NOT my fault. 

I didn’t choose this. A compassionate care partner (like Maureen) understands that. She works with me, not for me – and serves out of love, not duty.

Gratitude for Maureen

You didn’t think I’d forget her, did you? The only reason I’ve put her last (but certainly not least here) here is because the majority of my gratitude posts are devoted to her!

I’m always grateful for Maureen. Every day. Every single day. 

She’s the appointment maker. The organizer. The rememberer of things I can’t remember. The filler of blanks. A comforter when I’m upset and overwhelmed. Heck, just the other night, I was having my dementia-related hallucinations – I call them “visitors” – and although she can’t see or hear them, she often starts yelling at them along with me (or even throws a slipper in their general direction).

It comforts me to know she’s my protector and always on my side against these trials – real and imagined. I wouldn’t be alive today without her. I love her so much!

So, Yes, I Am Grateful Every Day While Living With Dementia

I’m grateful for a lot more. Far too many people, places and things to mention here. 

I’ll continue with these gratitude posts as long as I can. It’s so much better than the alternative. If you stop – even a few seconds each day – to think about the good – it can make the absolute worst circumstances feel that much better. Trust me!

Peace

-B

Expressing Gratitude Because I’m Cancer Free!

By Brian LeBlanc

I’ve been in the room for “the talk” a lot. No, not that “talk.” The other talk. The scary talk. Lots of different types of scary talks, actually.

You know the talk I’m talking about. You know, when the doctor comes in the room in his white lab coat, looks down at the chart, and unveils some God-awful news. You pray it never has to happen to you … or a loved one … or a friend … or even your worst enemy.

But as you know, for some, it just happens. I first heard “Mr. LeBlanc, you have Alzheimer’s” in 2014. Then it was “Mr. LeBlanc, you have vascular dementia.” Scattered all around all that were a bevy of heart procedures, and let’s sprinkle in some diabetes for good measure.

So that’s why I’m so happy, excited, elated – absolutely pumped — to report that I DON’T HAVE prostate cancer!

But The Last Few Months, My Outlook Wasn’t So Positive

You understand. Any man over 50 likely understands. 

Getting up in the middle of the night to go. 

All the time. 

Not being able to go. 

Pain.

General discomfort.

The symptoms are enough to stop any man in his tracks. And for someone like myself with so many health maladies – having long since come to terms with my own mortality – you’d think I’d be used to it. Just another thing. Another thing that might kill me. That reality — whether it’s dementia-related illness, heart disease or the potential for prostate cancer – never gets easier to swallow.

Before the doctor did all the tests and rendered his verdict that I DON’T have cancer, my mind naturally went lots of places – related, unrelated and completely out of this world. And my dementia, quite frankly, didn’t help. 

Now, you know me. I try to have the most positive outlook possible. I bring humor into every aspect of life, especially in its darkest places. And, boy, did I go to a few of those places where humor couldn’t soften the blow.

What If I Need Surgery?

Surgery in advancing stages of Alzheimer’s and other types of dementia is risky. Any anesthesia beyond a mild sedative could send my mind into a permanent fog. As if that wasn’t already the case. My foggy mornings are becoming foggy days. My foggy days are stretching to foggy weeks. Weeks stretch to months where most of my days were spent not doing much of anything at all.

All the sudden, my important dementia advocacy and outreach work for We Are Dementia Strong and other affiliated organizations and networks … just … doesn’t happen. But that’s my life’s work. Our podcasts, our blogs, my talks all go on the back burner.

And that’s WITHOUT surgery and anesthesia.

I know better than most that my time, memories and cognitive abilities are finite. But if I had to have prostate surgery, would it be worth the risk of losing all that more quickly?

Creating Scary Alternative Realities

My dementia mind has a funny way of playing tricks on me. My neurons fire in the weirdest ways, creating crazy dreams, hallucinations and other experiences that feel so real. I could swear something happened, that I had some conversation or visited some place. Sometimes my reasoning and judgment just aren’t there.

So when thinking of this whole prostate thing, my mind created these alternative realities. I don’t even remember what they were. But Maureen, my wonderful life partner/care partner, tells me they were out-of-this-world bizarre. I apparently recalled conversations with the doctor that never happened. Maureen tells me that I often feared having to undergo strange, painful, experimental treatments that don’t exist in medical science.

But I was convinced they would happen. 

Forgetting The Problem Entirely

Imagine hearing for the first time that you might have cancer. Just might. Now imagine hearing the C word  “for the first time” again … and again … and again.

So, yeah, my memory clearly isn’t what it once was. While we often say dementia is so much more than memory loss, that’s obviously still a major part of it. So when Maureen would bring up an upcoming doctor appointment or that I’d be heading in for more tests, my first thought was always, “Why?”

Why go see this doctor whose name I don’t recognize? Why more tests? Cancer? What the heck?! It was like getting shot in the chest over … and over … and over again. 

But Thankfully, I Don’t Have Cancer. And I’m Using This Experience To Show Gratitude

Perhaps you’ve seen I’ve begun sharing gratitude every day on Facebook. (I keep mixing up the word with “gratification,” which are clearly two different things, but you get the point.) I share something I’m grateful for.

It’s a nice meditation. It’s a nice reflection. It’s a nice way to recognize that, while I may struggle with health issues and all of this nonsense, I still have so much to be thankful for. 

I’m thankful I don’t have cancer. At least it’s not that. I’m thankful for Maureen, the love of my life, without whom I wouldn’t be alive today. I’m thankful for doctors and clinicians, who may share scary news, but who want me to help me through whatever problems I can’t fix on my own. 

And I’m thankful for you. For having this platform to share. To educate. To advocate.

To be #DementiaStrong.

Until next time. 

Peace,

-B

#WeAreDementiaStrong: We’re Presenting at the Pioneer Network Conference!

By Brian LeBlanc

#WeAreDementiaStrong is heading back to the Pioneering a New Culture of Aging Conference, July 27-30 in beautiful Denver! I couldn’t be more excited after a couple years off (due to that nasty Covid stuff) to laugh with old friends and continue important conversations around dementia – living with dementia, care-partnering with dementia and, yes, laughing with dementia.

The whole 9 yards. Oh yeah, Maureen will be there, too! (I’d better not forget that! She’d have my head – as if dementia wasn’t already trying to take it from me. Haha!) 

OK, OK, jokes aside, the love of my life and I have a lot of important work to do as we return to this annual gathering of influencers and experts in elder care, dementia advocacy and life-affirming culture change hosted by the Pioneer Network. 

So What’s My Part at the Pioneer Conference? Talking About Dementia, Of Course!

It’s what I do best, right? I’m honored to be speaking twice in an awesome lineup of outstanding minds addressing a range of educational topics pertinent to persons living with dementia, care partners and professionals who serve all aspects of the continuum of care. (Helpful hint: It’s a great CE credit opportunity for professionals.)

If you know me, I’ll sprinkle in a bit of humor. And I’m happy to be joined by my co-presenters, many of whom we’ve worked alongside for years to advance dementia-related education and advocacy nationally and internationally.

‘The Joy of Dementia (You Gotta Be Kidding!) – Creating a New Performance of Dementia…and Life’ 

Thursday, July 28th – 3-5 pm

I’m proud to join coordinator Mary Fridley and member Nancy Nelson of the Reimagining Dementia Coalition as we reverse the “tragedy narrative” and stigma around dementia. We will address the growing demand for more innovative, relational, improvisational, playful and humanizing approaches to dementia care. There’s ample opportunity to embrace community, creativity, joy and growth for persons living with dementia and care partners.

This will be an experiential workshop highlighting:

• Improvisational games
• Creative exercises
• Philosophical/performed conversation 

All of which aim to foster a supportive environment to enjoy the “non-knowing growing” that’s possible, even in uncertain situations. As I often say, “I may have Alzheimer’s, but Alzheimer’s doesn’t have me.” Yes, we can still find joy with dementia.

Persons Living with Dementia Promoting Wellbeing Through Education and Advocacy 

Friday, July 29th – 9:15-11:15 am

Let’s have a meeting of the minds – dementia minds! (And, our marketing director will be happy to know there’s a dog involved.) I’ll be joined by some fellow co-founders of the National Council of Dementia Minds, Mark and Brenda Roberts (and their cute service dog, Sophie), to offer first-hand perspectives on living with dementia.

Each of us has dementia. That’s what prompted us and our other awesome co-founders to launch NCDM in 2019. We’ve learned to cope and build a life worth living in our own special ways, and we intend to share those daily realities. We’ll also address the many ways we provide education and advocacy in our respective communities and spheres of influence.

And once again, we’ll share a few laughs with a funny video and undoubtedly some witty banter during the Q&A portion. 

Join #WeAreDementiaStrong at the Pioneer Network Conference

We’re there to talk. But just as importantly, we’ll be there to listen. Maureen and I will be around the Sheraton Denver Downtown for the duration of the conference. We’re eager to check out a great mix of pre-conference workshops, general sessions and concurrent sessions. We’ll also be promoting the new #WeAreDementiaStrong e-magazine, which is absolutely packed with helpful insights! 

We love making new friends, so don’t hesitate to come up and say, “Hi!”

Peace

-B

Dealing with the Emotions of Life-Care Planning

By Brian LeBlanc

I was upset. So was Maureen. I suspect a number of our care partners were, too. But the conversation needed to be had we needed to update our life-care plan and to have the tough talk some of us desperately needed.

The tough talk I desperately needed.

Maureen, my life partner/care partner, does so much for me as we trek this path with Alzheimer’s and vascular dementia together. I still cling to my independence – sometimes, I admit, a bit too much – but truth be told I know the reality. I’m dependent on Maureen for a lot of things these days. She’s my everything, and I love her dearly for it. I need her here to help me through the fog most days, to coordinate my schedule and doctor appointments, to finish my sentences, to preserve my steadily fading memories.

I just need her here. 

I’ve grown accustomed to having her here to help me. And I know she always will be, but the more important understanding that I needed to come to was that it’s not all about me. Maureen has a life. She has her own health issues. She has a business to run and clients to see. Without having the time and space to handle her business, she won’t have the health and energy to handle our business and my business.

So We Took Action and Adjusted Our Life-Care Plan

We called a meeting of our care-partner team. (Luckily for us, Maureen is a professional life-care planner and Board-certified Patient Advocate, so she knows how to orchestrate all this!) 

The goal? Have a plan in place for if Maureen can’t be there for short and prolonged periods of time. And thanks to our brilliant friend and care partner Mel Coppola, we arrived at our new 2-2-2 life-care plan. (Maureen wrote an awesome blog about this plan, and I wouldn’t dare speak for her. I know better than to poke the bear!)

So, of course, I’m here to discuss the emotion of it all. Because that’s what I do. As much humor and lightness as I like to bring to these discussions – for the betterment of others living with Alzheimer’s disease and other types of dementia – there’s a sadder, darker perspective that always must be addressed.

For what seems like the first time, this had nothing to do with my health struggles, my personal needs, or my mortality.

‘I Won’t Be Here Very Long to Help You in the End’

How do those words taste? OK, so it’s obviously hard to remember the details. But I remember that emotion just fine. 

The care-partner team met at our place to discuss what should happen if Maureen’s not available for two hours, two days, and two weeks. (Hence, the 2-2-2 name.) I was in the middle of my “what about me?” spiel. I couldn’t fathom it. Why wouldn’t she be available? Isn’t she always supposed to be here to help me?

“OK, Brian, if I can’t attend to my own medical and personal needs, I won’t be here very long to help you in the end,” Maureen said.

It hit me like a lightning bolt. If ever there was a mic drop – that was it. I was immediately disarmed. I went from being angry – and, I hate to admit, a bit selfish – to being more understanding and – if it’s even possible – more in love with her.

How could I have been so blind? I know she doesn’t blame me. Neither do the other members of our care-partner team. When everything has been about you for so long, any person would naturally fall into that pattern.

So with that emotional baggage out of the way, we were free to discuss what to do about it.

The Plan: Learning To Let Go

With the understanding that Maureen, the light of my life, has to have the time and space to be the light of her own life – to help herself and many others like me at her job –  we adjusted our life-care plan. 

We learned way back in November that a health issue for Maureen could derail even the most professionally-crafted life-care plan. We learned that it must be flexible and factor the unexpected.

Who will be there to sit with me for a few hours while Maureen attends to a client or steps away for her own mental health? Who steps up when she must go to the hospital for a few days or even a few weeks?

The 2-2-2 plan, thanks to our tough discussion, now addresses all that. Care partners whose level of commitment may have changed were able to voice their new realities. Immediacy is an issue for some due to work and family responsibilities. That’s cool. Completely understandable. Now we know. 

Someone else, a neighbor perhaps, may need to help in a pinch. We need to engage a home care or respite-care agency to manage things in a more long-term situation. And that’s fine! I’m looking forward to meeting them and us getting to know each other!

And Now, We Move Forward With Confidence

All of our care partners showed up for this meeting – not a single absence. It felt so good to know that our friends and loved ones care that deeply. On a personal note, it was refreshing to sit down and chat with them. It’s hard to maintain relationships when you have dementia. Lots of people stop coming around, and it gets lonely.

But, as I always say: I have dementia, but … dementia doesn’t have me. I’m so happy we were able to get together, have some real discussion and emerge with a new life-care plan that works for everyone.

Peace,

-B

Dementia Meditations: ‘Parting is Such Sweet Sorrow’

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

Dementia Meditations: Living on the Way to Dying

By Brian LeBlanc

I hate to be a downer. Anyone who truly knows me knows that – that I’m always looking to find the good, to find the laughter, to smile. Because we’re all “on the way out,” only at different stages. For me, with my Alzheimer’s disease and vascular dementia, my “way out” may be a little closer than yours.

And that’s OK. Complications from dementia kills 100 percent of us. Life, even for healthy people, kills 100% of us. So let’s focus on living on the way to dying.

I spent last weekend at (you guessed it) Disney World with my life partner/care partner, Maureen, our granddaughter, Emma, and some close friends. It’s like my 4 billionth time there (you think I’m exaggerating haha), and each time I find something new and exciting. Or perhaps we can find some humor in that it’s only new and exciting because I don’t remember it from before. And you can see from the picture that I was completely helpless against being covered in Mickey Mouse stickers, compliments of our 4 year old Granddaughter, Emma. 🤣

This was Emma’s first visit to Walt Disney World.

Now, THAT’S living! Enjoying loved ones. Enjoying a happy place. Living in the moment. Relishing the time I have left. And I would hope, as my dementia progresses, I’m able to return time and again – even when I can’t communicate or move around freely. I’ll remember Maureen and Emma and other loved ones and the place – even if not by name – as something loving and pleasant.

I have to admit, this time was a bit different.

I have gone through some brain changes since the last time I went to WDW. I still remembered certain attractions, but I couldn’t remember the names of them. That made me very sad.

The BIG BLOWOUT, something happened that never thought would happen.

We were having a great time, especially when we saw the joy and happiness on the face of Emma and her new found friend

Living and Dying with Dignity

We’ve make a lot about a life worth living and dying with dignity in our messaging for #WeAreDementiaStrong, Caregiver Support and Resources, A Bit of Brian’s Brilliance, and our new Podcast. It’s a process. There’s a lot of planning and organization. Thankfully, that’s what Maureen does professionally. But even with her expertise, there’s a lot of learning and adjusting along the long-and-winding road.

We do what’s needed to light the path where it’s most dim, to smooth out the rough areas, to understand complex realities. And I thank God for Maureen coordinating all those doctor appointments, medications, memory-care treatments and outside-the-box thinking. She knows listening to music for a bit can snap me from a fog. She knows when to tell me about upcoming events and appointments – and just as importantly when not to tell me – to avoid unnecessary anxiety. 

So as we prepare for the end, whenever that may be, I know we’ll have that life worth living … together.

A Friend in the End

I’ve said for so long that I want to have a living memorial service. I want music, drinks, Hawaiian shirts, laughter, more drinks, more music, and memories (even if they’re no longer mine). Let’s celebrate the good years, the bad years, the in-between years. I hope for a friend in the end – a bunch of friends would be even better!

But death … when it happens … will be a solemn occasion. Lots of people will congregate at the funeral home, waiting in line to see the person they once knew lying in the casket.

They may shed a tear or two, say a prayer, and then they walk away. As they join family and friends, they say things like, “Oh, he looks so good.” or “WOW, their last days must have been hard seeing all the makeup they used.” They may live out of town and didn’t visit or make any phone calls during the last weeks or months, so knowing the details of decline and what to expect would be quite impossible.

These are folks who say, “Well, I would’ve called but I didn’t think he would understand what I was saying. I would have been embarrassed.”

I think you get the picture. But know the presence of loved ones, even if we may not comprehend, is still welcome. It’s actually vital to our well-being.

As my Alzheimer’s progresses, I know it or a related illness will probably lead to my death. But I’m not going to live out the rest of my days waiting for my time to come to an end.

I WANT TO LIVE as much as I possibly can. I want to visit places I’ve never been but always wanted to. 

I want to LIVE like there is no tomorrow with no regrets.

Peace

-B

Dementia Advocacy: Honored to Receive Southern Gerontological Society Award

By Brian LeBlanc

When I was diagnosed with Alzheimer’s disease in 2014, I could’ve never guessed the path ahead. Crazy. Amazing. Uncertain. Scary. Rewarding. All rolled into one. All I knew was that I felt a calling toward dementia advocacy and to help others on similar paths with education and resources. 

Fast-forward a few years, and I was absolutely honored, humbled and inspired to receive the Rhoda L. Jennings Distinguished Older Advocate Award from the Southern Gerontological Society. (OK, so Maureen jokes that seeing me “humbled” isn’t something everyone can say, but it’s true … 100% humbled to tears.)

The awards ceremony was held April 7 in Panama City, FL. The banquet hall was packed with so many wonderful people in the world of gerontology (a big, fancy word for aging), of which Alzheimer’s and dementia care is just a small part. So there were doctors, scientists and researchers, university professors and other educators, advocates, influencers – all spanning different disciplines and areas of expertise across the whole South. 

It was almost too much! Although, if you know me, the more people to chat with the better! (But again with my nasty habit of digressing.)

It was an honor to be considered a peer – even if just for a day – and to have my longtime efforts acknowledged toward Alzheimer’s and dementia advocacy and education. When I went up to receive the world, it was the best feeling ever to turn back around and see these great folks standing and applauding. 

And on a side note, I was so happy to be able to attend so soon after my recent pacemaker procedure.

Dementia Advocacy Through Outreach and Education

But more important than all that? The mission. #WeAreDementiaStrong has been steamrolling with the dementia advocacy mission. Maureen and I have always worked so hard to produce educational content, and we’ve been very blessed that so many organizations have offered us platforms to speak and/or write as guests. 

In the past 18 months, there’ve been some awesome developments:

• #WeAreDementiaStrong now has 501(c)(3) status, allowing us to receive grants and donations to scale this awesome mission and reach more people.
• Both #WeAreDementiaStrong and Caregiver Support and Resources, LLC now have new websites that are regularly updated with new informative content to help persons living with dementia and their care partners.
• We’ve produced a new magazine –  “What To Do After A Dementia Diagnosis” – available in both downloadable PDF and hard-copy formats.
• We’re launching the new #WeAreDementiaStrong podcast to reach greater audiences in the digital realm.
• We’re producing new on-demand Continuing Education Credit opportunities with Inspired Memory Care for social workers, nurses, patient advocates and other professionals who serve roles in the continuum of dementia care.

And we’re happy to say, there are even more irons in the fire! More education. More partnerships. More avenues for community outreach. 

#WeAreDementiaStrong Is Here For YOU!

We walk this dementia path together. Maureen, the love of my life, is the absolute best care partner, life-care planner and Patient Advocate anyone can ask for. And we sincerely hope our lived experience – the good, the bad, the funny, the sad and the ugly – helps you in some small way.

We’re honored for the recognition. But there’s so much more work to do – while I still have breath in my lungs and perhaps a few healthy brain cells left to say what needs to be said.

Much love.

Peace,

-B

Pacemaker Update: ‘I’m In Love With Her and I Feel Fine’

By Brian LeBlanc

I owe you an update! 

If you haven’t seen from social media already, my recent pacemaker procedure went just fine. Of course, Maureen and I had some fears and trepidation heading into it. With my Alzheimer’s, vascular dementia and long history of heart problems, even the most routine of surgeries brought so many risks.

What would dementia have to do with a heart surgery? Well, going under hard-core anesthetics could have completely wiped – or at least severely diminished – what remains of my precious memories and cognitive abilities. Thankfully, they used a twilight sedation to basically knock me into a state of semi-consciousness. The doctor apparently told me, “You’ll be able to hear us, but you won’t feel anything or remember anything.” I joked, “Doc, you know I have Alzheimer’s, right? It’s not going to matter anyways.”

I’d like to think everyone had a good laugh at that. But in all seriousness, even the twilight sedation could have left my already deteriorating mind in a dreaded fog – indefinitely. 

And then … it was over. So quick! On and off, in and out, like a light. Next thing I knew, I was waking up with Maureen at my side with a little pacemaker in my chest. We were all pleasantly surprised that there were no residual “foggy” effects. We thank our lucky stars, the Lord, whomever for that! 

(I’m told, however, that I was a bit flirty with a couple cute nurses. Me? Brian LeBlanc? No way! Maureen and I just laugh it off as me being silly.) 

I was scheduled to stay overnight for observation, but I was able to go home THAT VERY DAY! Even though Maureen (my wonderful and beautiful life partner/care partner) would’ve been able to stay with me, I was so happy to be able to sleep that night in our own bed. 

So in a nutshell, I’m home and happy and feeling well! Like that Beatles song goes, “I’m in love with her and I feel fine. (𝅗𝅥𝅘𝅥𝅰Do do-do-do do-do do-do-do𝅘𝅥𝅲𝅘𝅥𝅮).” 

Up and ‘Running’ A Few Days Later

Well, not running. But walking. And, believe me, that’s a huge, HUGE, HUGE, HUGE improvement. 

My heart had left me so weak. My sleeping heart rate had been dropping as low as 24 beats per minute. That’s frighteningly low. While awake, I couldn’t take a normal breath. My breathing was very, very shallow. Even going from the bedroom to the kitchen – maybe 30, 35 feet tops – was exhausting. (And I thought it was bad back when I was 285 pounds!)

As I mentioned previously, this was my fifth heart procedure. Three stents and a triple bypass in recent years had me scared how much more my ticker could take. 

But I already feel great. Maureen and I have been walking a mile a day around our beautiful 55-and-older community right on Tampa Bay! There’s a little loop around the complex, and now we can join our friends and neighbors in walking around it. We jokingly call it the “Senior Olympics track.”

I’m absolutely astonished at medical science. It’s just this itty-bitty disc implanted in my chest with little wires running to my heart. Pacemakers are nothing new. They’re simple. But they’re an absolute miracle. This little thing is SO POWERFUL!

Will it cure or fix my damaged heart? Absolutely not. Will it reverse the effects of my Alzheimer’s disease and vascular dementia by restoring more blood flow to my brain? Nope. Maybe it’ll slow the progression. Probably not too much, if any. 

But it will restore some quality of life. After all, as I preach for our nonprofit #WeAreDementiaStrong and Maureen for Caregiver Support and Resources, we’re all entitled to a life worth living. 

Special Thanks!

Without Maureen, I would not be here today. That was true years ago. And I’m in awe every day that not only does she help me, but thousands of others as a Board-certified Patient Advocate and life-care planner. 

Maureen and I are always happy to share my health experiences – living with dementia and other related/unrelated complications – and our lived experience with daily struggles and triumphs. That’s been my call to educate and help others since being diagnosed in 2014, and now with Maureen in the mix we can accomplish SO MUCH MORE! 

But I don’t share for me. And we don’t share for us. We share for YOU! As a result, we’ve gathered so many supporters who’ve offered well-wishes, prayers and support before and after the procedure. Thank you – a million times!

We’d also love to thank Dr. Jeffrey Steinhoff and the wonderful staff at the HCA Florida Heart Institute in Largo, FL. They treated me (and us) so wonderfully.

Peace,

-B

New Pacemaker, New Dementia Uncertainties

By Brian LeBlanc

Life is complicated enough. Of course, my Alzheimer’s and vascular dementia adds to the chaos and uncertainty. And as much as I openly discuss living with dementia for the sake of helping others, the opportunity to talk other health issues doesn’t come up as much.

So here it is: I’m having a pacemaker put in Tuesday. I’m scared. I’m nervous. I’m stressed. I’m anxious. And although I trust being in good hands – for a routine procedure under skilled doctors and with my life partner/care partner Maureen close by – the uncertainties would keep anyone up at night.

In a nutshell, my heart isn’t functioning properly … again. My cardiologist has been studying me for some time now. While sleeping in recent weeks, the heart rate has dropped as low as 24 beats per minute. I have to admit, the cell phone app was pretty cool that Maureen used to measure as I slept with my finger over her camera. But a normal sleeping heart rate is between 40 and 60. Maureen and I joke that my paltry pace is “basically dead,” but it’s no laughing matter. 

It’s scary, frightening even. 

Blood flow to my brain suffers. I feel it, especially in the mornings. I’m already increasingly prone to brain fog. Now I must wake up and kick my mind into gear while it starves for blood and oxygen. Some days I can emerge from the fog. Other days I sit in a trapped mind indefinitely, wondering if this is the day the fog stays for good.

The pacemaker will help. We know this. It’ll strengthen my ticker and improve blood flow to the brain. Will it fix my dementia? Of course not. Will it clear the cold, damp fog? Maybe 8 years ago when I first received my Alzheimer’s diagnosis. We’re too far along the path now. The reality is it may only slow the progression – maybe, only maybe. 

It’s not just about dementia now, though. That only scratches the surface because my medical problems say so. (Don’t ask me why, but I’m vaguely remembering “Because Stone Cold Said So!” from pro wrestling.) Unfortunately, this heart issue is genetic, too, on my father’s side. 

Counting the days, so many other problems fill my mind. I can’t shake them. I’m already an anxious person. My Alzheimer’s makes that worse. That said, they are legit concerns. I wouldn’t be human if I didn’t have some fear of something going wrong. But if I do pass, as you know, we’re more than prepared for a death with dignity. 

Now, I’ve been under the knife before. (Seems like too many times to count.) I’ve had three heart stents and then a triple bypass in 2019 – because, why not? Moving on to lucky number 5, I guess! As we all know, even the best heart has so many beats in it. Can mine take any more probing and prodding? 

Maureen’s so good at calming the negative thoughts. She helps me backtrack and reminds me I’ve emerged fine from each of the previous surgeries. She reminds me a pacemaker thing these days is minimally invasive – essentially making a little pouch in my chest for the device and connecting some electrodes. 

But she’s honest. That’s what makes her such a great care partner. Anesthesia can cause delirium in even healthy older patients. Those with advancing stages of Alzheimer’s and dementia like mine? We may regress even harder. Thankfully, I’ll be under “twilight sedation” – a lighter form they just so happen to use for those wonderful colonoscopies. (Note to self: ask Maureen if I have one of those bad boys sometime soon.) 

At least I probably won’t wake up all groggy and nauseous. I digress.

Maureen says she wishes they would’ve announced the surgery on Monday, the day before. I understand why – less time worrying and brooding for me. I told her, “Sure, drop it on me the day before and send me into shock overload!” Imagine that conversation: “Oh, by the way, you’re going to have a surgical procedure on your heart tomorrow.” Ugh!

Back on a serious note, though, I’m so glad they’re letting Maureen stay with me that night. They’ll be observing me for a day or so. It’ll make me feel so much better to have her by my side, even if I don’t actually need her for anything. (I’m sure I will! And she says it’s the least she could do to help the staff deal with me!)

Tuesday is going to be a very long day. I know I’m going to want to go home. I’ll be OK. If not? I guess you’ll have to hear that from Maureen. Either way, I want you all to celebrate and be happy. 

– Brian