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

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

and yet . . . HERE WE ARE!

#AlzheimersDisease, #VascularDementia, #Type2Diabetes, as well as other ailments, is not exactly how I envisioned my older years. Yet, HERE I AM, BUT NOT GIVING UP! So many other Diseases now have cures, ways to slow progressions, and have ways to assist individuals to live a good life. However, WE DON’T have those things so HERE WE ARE, STILL WAITING PATIENTLY . . . VERY PATIENTLY.

For those of us who are Living with a Dementia-Related Illness, we’re not just standing by and letting time slip away. We raise awareness, talk to the newly diagnosed to give them some hope as to what the future looks like for them. We also assist others who are further on with their disease, many now living in a Care Community. Sadly, most are forgotten and that adds to their progression. Then there are the lucky individuals who have consistent visits from their family and friends. This helps to keeps their hopes, strength and clarity strong.

I remember seeing my parents (Mother with Alzheimer’s, Father with Vascular Dementia, just slipping away, day by day. I sure didn’t expect to receive my Alzheimer’s Diagnosis in OCT, 2014 and then attend my Mother’s Funeral in January, 2015. That was a very hard time, but, I knew I had to push on.

I knew I had to do something to call attention to, not just Alzheimer’s Disease, but also ALL Dementia-Related Illnesses. That is what led me to become a Dementia / Alzheimer’s International Advocate. I do this in honor of my Mother not only to keep her memory alive inside of me but to honor her life for being one of the the strongest individuals I knew.

Our Advocacy efforts during COVID-19 took away our face-to-face speaking opportunities but we were, however, thanks to technology, able to Advocate by utilizing ZOOM, Go To Meeting, and other online platforms. It wasn’t the same as being there in person but our messages were still delivered.

It will take something stronger than COVID-19 to stop us from Advocating. We will be taking the stage once again (virtually) to continue telling our stories, our accomplishments as well as our difficulties.

Just so you know, June is “ALZHEIMER’S and BRAIN AWARENESS MONTH.” You will probably be asked to post something purple on your timeline to assist us to make others aware. I hope I (WE) can count on YOU to post something PURPLE!

Until Next Time,
PEACE!
B

Yes, we are open and honest about the lives we live each day. We are not afraid to talk about the GOOD, the BAD and the UGLY. We don’t want anyone walking away from one of our presentations and just hear about the good. The BAD has to be shared so that everyone will walk away with a complete understanding.

We are fast approaching the month of June. June just happens to be To raise awareness of these cruel diseases, I would appreciate it if my friends could post put this on your page for today.Hold your finger anywhere on the message to copy and paste to your Timeline.💛

DEMENTIA MARCHES ON!

Dementia knows no age.
It equally takes the memories of man, woman and even children.
It cruelly attacks our most recent, precious memories, leaving us with our long-term memories, which allows us to remember what was but not yesterday or today.
It can stop our brain from functioning at a moments notice like a pitch black curtain descending in our heads, causing us to lose our words and complete thoughts in mid conversation with no way to retrieve them, leaving us standing there with a blank expression.
No matter what we do to try to stop it, DEMENTIA MARCHES ON!

~B

I’m not writing this to depress you or to make you feel sorry for those of us that are living with a Dementia-Related Illness, I’m just trying to help you understand what we experience, sometimes for a minute, an hour, a day or days. To put it bluntly, IT SUCKS!!!

What I do ask you is to not feel sorry for us. I ask that you to interact with us just like you would anyone else.
But wait . . . that’s not all!

Dementia not only affects memory. There are also side effects that come along with our Disease. Some, but not all are anger, emotional roller coasters, hallucinations, depression, anxiety, difficulties with visual and spatial abilities, problem solving, difficulties handling complex tasks, difficulties with planning and organizing, and later on, difficulties in completing every day tasks and more issues as we progress.
To make matters worse, according to #AARP, some scientists say there is compelling evidence that the negative effects of the COVID virus could last even longer, possibly creating a surge of cases of dementia and cognitive decline years down the road.

I could go on and on but, I don’t want to and I think you get the point.

When 2021 was approaching, I realized that I was entering my 7th year of my Alzheimer’s journey and my 3rd year of my most recent diagnosis of Vascular Dementia. Has that stopped me from #LIVINGWELL? The answer to that question is NO! If anything, it pushed me forward to do things I might not have done before.

In 2019, I moved . . . again, but this time staying in FL. I moved to Largo to join my Life Partner / Care Partner Maureen Rulison. She has been a blessing in disguise, (she says she is not in disguise) organizing all my medications, vitamins, setting me up with my new physicians and basically helped organize my life.
Adding to my list of addresses, we just recently moved to, what we hope to be, our forever home. (the U.S. Postal Service just breathed a sigh of relief! hahahah) We talked a lot about living on the water. With Maureen’s determination and the stars aligning, we were lucky to find what we were wishing for. Our backyard is Tampa Bay (the body of water, not the area) and the dolphins and birds greet us with a good morning every day. It’s surreal to live in a beautiful location and this location and all that it offers does help with my anxiety.

I’m saying this here and now, unless we win the lottery, we are NOT moving again.

I feel like I have jumped around a lot with this post, but I know I haven’t written a new BLOG post in quite a while so I had some catching up to do. My New Orleans friend of hundreds of years, Giorgio, texted me the other day with this message . . .
“Good Morning my friend . . . I’m noticing there’s only 5 days left in January. When are you going to make your January post?”

Well Giorgio, here ya go my friend. Thanks for the heads up and not allowing me to get lazy. I need that push every now and then.

I would also like to thank all those who follow me and send your encouraging words. It really means a lot.

If I could leave you with words of encouragement . . .
“If you are LIVING with a Dementia-Related Illness, don’t give up!
If you know someone who is LIVING with a Dementia-Related Illness, drop them a line. It may be just what they need .
If you can’t decide whether or not to keep in contact with someone who is LIVING with a Dementia-Related Illness, the answer is ALWAYS, YES!

PEACE,
Brian


Somewhere Between the Mashed Potatoes and Strawberries!

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What do you mean Mashed Potatoes and Strawberries don’t go together? Have you ever tried dipping those sweet, delicious strawberries into the creamy, buttery mashed potatoes? No? Neither have I and I doubt I ever will for I can just imagine the taste. YUK!!!

Although the title of this post may make you think I’m going to write about food, you would be mistaken. It’s more like things that don’t seem to go together but as time goes on, they do. You’ll see.
This brings me back to a previous blog post “Changes in Lattitudes, Changes in Attitudes” https://bit.ly/2ZOaY0G where I referenced the opposite traits of the Cheetah and the Sloth. If you haven’t read that post, you should, but if not, it’s OK.

When living with someone who is structured, business minded, intelligent, organized, etc . . . and the other individual is ME, well how could anything go wrong? Throw in 2 different types of Dementia as well as other medical issues, that’s when things get interesting.

Let me explain so you can see the full picture . . .


Maureen wakes up at the crack of dawn, has her Chai Tea, heads into the office and starts working. I, on the other hand, have no idea what dawn looks like (other than the dish-washing liquid) and I will usually wake up long after dawn has turned into mid-morning. I go into the office, barely awake she tells me good morning and then immediately heads straight into telling me her, my, our schedules for the day. I usually have no idea what she is talking about for I don’t remember things from one day to the next, but if she says it’s on the calendar I just nod my head and then head to the kitchen to pour myself a cup of the the Morning Nectar of the Gods, otherwise known as COFFEE, which she had already prepared for me when she got up. All I have to do is flip the switch and that delicious aroma fills the kitchen.

I then sit down on the sofa, open up the Calendar on my phone and try to make sense of what I see on the calendar and try to remember all she said a few moments ago and appreciate all that she does for me. Since COVID-19 as well as some progression of my Alzheimer’s, I would not be able to run my own life as structured as she lays it out for me. She keeps my calendar organized, my medicines organized, my appointments organized, and so much more, all while running her own business. How she does it, I have no idea, but I am so very, very grateful.

So, what does this have to do with Mashed Potatoes and Strawberries? You’ll see.

I remember back in the early 70’s when my sweet, little niece would demand that I sit and watch Sesame Street with her every morning while she ignored her own breakfast and ate mine. Although it drove me crazy sometimes, I look back and I cherish those memories and wish I was back in the 70’s to relive those moments.
Anyway, during one of the teaching moments, Sesame Street characters used to sing a song, “Which one of these things is not like the others”? or something like that.

I bring this up because that’s the way some of the morning conversations Maureen and I have during “MY” first thing in the morning.
Now granted, she has already been up for several hours and her brain is moving at full capacity. Depending upon how I wake up (foggy, dizzy, sleep deprived, etc…) she will start out as she usually does on one topic but then goes right into the next one. The problem is, I’m still trying to digest what she WAS talking about as she is already into topic #2.
I need to say, she is doing nothing wrong. I have asked her from the beginning of our relationship to NOT treat me as if I have Alzheimer’s and she does that very well. When she switches topics. and goes straight into the other one without missing a beat, she doesn’t do it to be cruel, it’s just the way her mind works and because of my requests to not give me any special treatment.

I’m not sure my mind ever worked like that so in a way, I become quite fascinated as to how she keeps things straight. Any way, after she changes the topic, it takes me a little bit to realize that not only did she stop talking about one thing and switched to another, she is already half-way through topic #2. She sees the look on my face, realizes she has lost me and she says, “where did I lose you?” I reply,”somewhere between the mashed potato’s and Strawberries!) That’s my way of saying, “my brain was filling up with information (mashed potatoes) and all of a sudden, in comes another completely different topic (she mixed in the strawberries) that has nothing to do with the topic she was just talking about and it all mixes together into one big lump of instant brain fog. Then here comes the Sesame Street song in my head (Which one of these things is not like the other“?)

“Yes you did but I don’t know where” which is why I started saying, “it was somewhere between the mashed potatoes and the strawberries.” Although they are completely different I’m not really sure how I came up with that.
Welcome into my head.

Other than they both come from the ground, they have never appeared on any menu as any entree’ or on any plate I have ever been served. All I knew it was the first thing that popped into my head that gives an example of two things that were opposite. Plus it always gets a laugh.

I don't know where" which is why I started saying, "it was somewhere between the mashed potatoes and the strawberries." Although they are completely different I'm not really sure how I came up with that.
Welcome into my head.

Maureen and I learn things about each other, sometimes daily. It helps us both to understand the other one better. Will it stop her from giving me my morning briefing? No because I have come to look forward to it. Will it change the way she delivers it to me? Maybe . . . Maybe Not. It depends upon whether or not she remembers. If not, Strawberries and Mashed Potatoes will fly!

I guess what I’m trying to say is, there is a difference between “KNOWING of” someone with a Dementia-Related Illness and “Living 24/7 WITH someone with a Dementia-Related Illness. I know there are experts, or who claim they are experts when it comes to knowing all there is to know about Individuals with Dementia and some do a very good job of explaining things, but, in my humble opinion, if you want to know from the experts, talk to either a Care Partner / Life Partner or go straight to the horse’s mouth and talk with someone who is “LIVING WITH a Dementia-Related Illness.

Either way, be prepared to be served some Mashed Potatoes and Strawberries because if you have met ONE person with a Dementia-Related Illness or One Care Partner, you have only met ONE person!

Are There Do’s and Don’ts When it Comes to Dementia?

Shortly after I was diagnosed with Alzheimer’s Disease in 2014, I came up with my tag line, “I Have Alzheimer’s BUT . . . It DOESN’T Have ME!!!”

What that meant to me was I didn’t want to be identified by my Alzheimer’s, rather, I still wanted to be identified as Brian. Well, things didn’t quite work out that way. Instead of continuing to identify me as Brian, it felt like more and more people started saying their good-bye’s. Phone calls, text messages, e-mails just went unanswered. It was a very lonely time and some days, it still is.

I use Social Media as a way to keep up with the latest trends, news, discoveries and anything positive I can find regarding Dementia-Related Illnesses. I also use Social Media to remain . . . SOCIAL. Most days I receive the “Memories” post that reminds me of past postings, photos and, of course, memories. While I enjoy looking at some of the photos, there are other photos that make me sad. These are usually photos of people I thought would be my friends forever but have now disappeared.

Don’t get me wrong, I am not complaining, whining, or looking for sympathy. I am simply trying to figure out why some of these folks just don’t engage with me anymore. These aren’t people who were just acquaintances, these were people I thought were my true friends and still would be throughout the rest of my life. This has proved not to be.

I am very thankful for those folks who still stay in touch with me. It brings me joy, smiles, warmth and all sorts of “feel good” feelings. I am so very thankful these folks have kept me as their friend and not toss me away like an old, used up newspaper.

This brings me to the title of this Blog Post, “Are There Do’s and Don’ts When it Comes to Dementia?” I know there aren’t really any rules but when I did some research, I came a cross the information below which is the closest thing I have found regarding the Do’s and Don’ts of Dementia

16 THINGS I WOULD WANT, IF I GOT DEMENTIA
by Rachel Wonderlin

  1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  3. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
  4. If I get dementia, ask me to tell you a story from my past.
  5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  6. If I get dementia, treat me the way that you would want to be treated.
  7. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
  8. If I get dementia, don’t talk about me as if I’m not in the room.
  9. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. If I get dementia, remember that I am still the person you know and love.

These 16 things make so much sense to me. It’s basically saying, “treat me as Brian”. I know there are some things listed above that “may seem” wrong, however, don’t look at it as wrong. People who are Living with a Dementia-Related Illness may sometimes have their own reality. I go through periods of time when my own reality may be skewed. If someone tries to correct me and guide me towards the reality they have, especially when I’m in my brain fog, let’s just say it usually does not end up pretty for I become argumentative, unreasonable, foul-mouthed and even more confused as I was to begin with. I know this because I ask Maureen to tell me, when I come out of my fog, if I did anything mean or say anything foul. I try to learn from it, but sometimes it just doesn’t stick.

I know I rambled and may have gotten off topic but, this is what happens sometimes with those of us living with Dementia.
Some of my friends may have seen me acting in a peculiar way when I was in my fog. That could be a reason they stopped keeping in contact with me.
Some other friends may have had a family member who recently passed away with a Dementia-Related Illness. It may be too hard for them to see me going down that path.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.

Whatever your reason is for not staying in contact with me or someone else who is Living with a Dementia-Related Illness, those reasons are yours and yours alone. Just know, it’s OK. We may wonder why but the thing about Alzheimer’s and Other Dementia-Related Illnesses, we may just forget . . . until we see those Memories pop up on our Social Media feed.

Until Next Time . . .
PEACE

B

Lions, Tigers, Bears & Covid-19…OH MY!

Hey, have you heard about that COVID-19 thingy? It’s EVERYWHERE in the world, well, almost everywhere. Antarctica is the only continent with no confirmed cases of  #Covid19. The impacts of Covid19 are now being felt at the North Pole for planned aerial surveys and resupply flights have been canceled.

What does this have to do with Dementia Strong? NOTHING, nothing at all . . . or does it?

On any given day, those of us who are Living with a Dementia-Related Illness usually spend a lot of time inside. Sure, we go walking to get exercise, we go to the grocery stores with our loved ones, we go to #Starbucks, we may even take an occasional trip to the Grocery Store if we feel like it, as long as we dress in our Hazmat Suits. But there’s a huge difference between being inside because we feel more secure and less anxious and being “MADE” to stay inside for we don’t know who has or who hasn’t been exposed to someone with the virus.

We can no longer go to our favorite restaurant to have our favorite meal because you can no longer go inside. You can get it to go, but it’s just not the same when you realized you’re eating your favorite meal from a styrofoam container.

Visiting with your friends and family means using #ZOOM or #FaceTime or #Skype or #HouseParty or any other ways we can make video calls. Yes, it’s nice to be able to see their faces, hear them laugh, and find out what’s been going on with them, but the physicality is not there. You can send a virtual hug, but it doesn’t have the same effect when you can’t hug them. You can’t even visit them in a hospital unless you’re wearing a mask and gloves. It’s the little things that are missed the most, especially when we are ordered to follow the rules.

I know I mentioned earlier about going to the grocery. Maureen and I still go about once a week and yes, we follow the arrows on the floor at Publix telling us which way to go, and yes we wear our masks, and yes we bring our wipes and wipe down the baskets, even though we see the employees wiping them down before we do, and yes we follow Social Distancing, but yet, when we get back into the car, we start wiping everywhere. Talk about anxiousness setting in.

Maureen tells me “you know, you don’t have to go. I can do this by myself.” I realize she can but when it’s the only time during that particular day that I can get out of the house, I jump at the chance. I then started to wonder, does she say that because she may want to get out of the house by herself? We are together 24/7. Surprisingly, no one has been harmed during our “Corona Vacation”!

I must say, whether it’s been a day, 6 months or 10+years you have shared your life with someone, when you spend 24/7 with that person(s) for weeks and weeks, you learn A LOT about them. Some things you just don’t want to know. You can become closer and then distant, all in a 5 minute period.

Throw Dementia into the mix, well, that brings it to a whole different level.

I’m not trying to single “US” out but, the law should have stated, “practice social distancing and treat everyone like they have a Dementia-Related Illness” then they would have surely stayed away from one another.

No, I’m not looking for pity, it’s just a fact. Friends don’t usually call unless they are Dementia Friends or are related to Dementia Friends in one way or another.
They don’t visit, because, you know, they may catch it, even though we are NOT CONTAGIOUS!
They’re afraid to speak to us for . . .
– we may not understand what they are saying, or
– we may not be able to respond to the questions they ask, or . . .

Anyways . . . continue your #SocialDistancing, wipe down anything BEFORE you touch it and then wipe your hands AFTER you touch it, wear a MASK, and just be kind to EVERYONE. It’s a very unusual time for ALL OF US so just remember, although you’re wearing a mask out in public, your eyes can still show that you’re smiling!

Y’all Take Care,
Until Next Time . . . PEACE!

Brian

Don’t DO . . . BE, except . . .

“When you “DO” for someone what they can do for themselves, you disable them emotionally.” ~ Jack Hosman (Maureen’s Dad)

I believe I mentioned this phrase before, “DON’T DO, BE” but in the “Dementia World” it is so very important and worth repeating.

Sometimes, Care Partners, family members and friends may see a PLWD (Person Living With Dementia) struggling to do something and their normal reaction is to jump right in and do it for them. You don’t want to see your loved one / friend struggle, so you help them.

Unbeknownst to you, your loved one / friend get’s extremely frustrated and lashes out at you. In your mind, you were only trying to help them.
In the mind of the PLWD, you took away their ability to figure it out for themselves and, without asking, jumped right in and did it for them. In a way, you paralyzed them.

I can talk about this at length for it is something Maureen and I struggled with when our relationship started and we continue to do so to this day. You see, she is a “DO-ER” and a “FIXER”. It’s just who she is.
On the other hand, I am a stubborn S.O.B. (and a slow learner) and I can do ANYTHING and EVERYTHING I set my mind to, but then reality (ALZHEIMER’S) steps in. That’s when I ask for help.

I have to say, most of the time Maureen is very patient with me. Of course that has a lot to do with my responses to her question, “Do you need help?” If I answer her in a not-so-nice manner like, “NO!!! I CAN DO THIS!” she gives it right back at me. She doesn’t do it to be mean, she does it because I have asked her to treat me as she would anyone else. I don’t want any special treatment.

When I am in my “FOGGY STATE of MIND” she doesn’t ask me anything for I am not able to answer her questions. I can barely make sensible words (from what Maureen tells me at a later time) but I still try. That’s the stubborn part of me that is, I guess, always with me.

You see, when I first started my Advocacy back in the beginning of 2015, I started using my slogan, “I Have Alzheimer’s, BUT, It Doesn’t Have Me” because I was bound and determined not to be recognized as Brian, the guy with Alzheimer’s. I wanted to still be known as Brian, the guy who is Living Well with Alzheimer’s and he doesn’t allow it to define him. I still believe that to this day. I figure, if I allow it to define who I am, then I have lost the battle and I am nowhere near that stage of my life yet. I still have a lot to do and a lot to say.

OK, I got a little sidetracked. Back to “Don’t Do . . . BE.”

As the quote stated at the beginning of this post, doing for someone without asking “disables” them. It doesn’t physically disable them, but it does emotionally disable them. It takes away their confidence and when it happens over and over again, they lose their self-confidence and increases their doubt as to what they can and cannot do. This could start a mental decline and that’s what I fight, every day, not to go down that path. I know it will happen but NOT TODAY!

Actually, Maureen not only allows me to “BE” but she now asks me to assist her with things she is struggling with. That gives me such a boost of confidence and strengthens our relationship.

One last thing I would like to mention is for the Care Partners that are assisting their person in a Care Community. What if your person is non-verbal? How do you know if they are struggling with something?
That would happen over time, as you get to know your person, you would become more familiar with the non-verbal signs of them struggling and they may become more comfortable with you assisting them. It becomes a partnership as well as a relationship . . . one person helping another.

So, my main message / suggestion to you is this, “if you see your loved one struggling with something, don’t be so quick to jump in and do it for them. Ask them if they need some assistance. If it becomes something that could lead to them hurting themselves, you may want to ask them again to avoid any type of injury. Yes, I know it’s a slippery slope but as time goes along, you and your person will start working as a team and they may actually start asking for your help instead of waiting until it frustrates them. That is something I still struggle with but, more times than not, I ask Maureen for assistance and she is only too happy to jump right in.

Just remember, “Patience is a Virtue!”

Until Next Time . . .
PEACE

~Brian