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 pageI’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