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

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

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


Dying with Dignity

I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
– I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
– I want them use my organs to keep someone else alive.
– I want them to use anything they can to benefit others.

I can’t think of a better way to help others, rather than just put me in a hole in the ground.

In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

Like I stated above, this is not for me but I respect those who choose this alternative.

So, what do I want to happen during the dying process?

  • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
  • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
  • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

    This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
  • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
    I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

Some things I forgot to mention was, I want to have a Celebration of Life.

I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

Doing this is one of the greatest gifs YOU can give to your Loved Ones.
DON’T WAIT UNTIL IT’S TOO LATE!!!

Until Next Time . . .
PEACE!!!

B

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

ASSETS OR LIABILITIES???

I came across a post today that disturbed me.
It read: A tough conversation — when do older people stop being an asset and start being a liability or do they ever?

My question is, as an individual “LIVING with Alzheimer’s Disease and now, Vascular Dementia, and approaching my 60’s, am I going to be considered a liability by some? Will the public see me as well as others like me as a “Diseased”, “Memory-Impaired” “Demented” person?

How can a person all of a sudden go from an individual to a liability? Is that how the majority of the world sees us? If they do, they are very, very, sadly mistaken.

Just because I have Dementia-Related Illnesses does not mean that I cease to contribute to Society. On the contrary. It is my opinion that I contribute more now than what I ever did when I was employed. In 2013, my employer dismissed me for, what he claimed, was not carrying out my duties to the fullest of my ability. Although I was upset at the time, when I was diagnosed with Alzheimer’s a year later, he may have been correct. I now understand and accept that decision however, it didn’t mean that I was a liability.

My Grandfather and my Mother both Lived with Alzheimer’s but I, nor anyone I know, ever looked upon them as a liability.
My Father Lived with Vascular Dementia. Again, no one I know of looked at him as a liability.

I can’t speak for everyone so I won’t try. I can speak for myself and others I know very well that living with a Dementia-Related Illness, or any type of illness for that matter, is hard . . . very hard. It’s frustrating, not just for ourselves but for our families, our loved ones, and our friends. They have a front-row seat to our frustrations, confusion, and anger but in this case, the front row is not necessarily the best seat in the house.

I have so many friends and acquaintances who have a Dementia-Related Illness, who are CarePartners for their loved ones, who are Executives, CEO’s and Members of Dementia and Elderly Organizations and Communities. They, like me, as well as thousands of others,  do not look upon Individuals with Dementia-Related Illnesses or any type of Illness / Disability as a Liability. They see US, not our Disabilities. WE see us as Individuals. We are Person-Centered Focused.

Never should anyone, no matter age or gender, be looked upon as a Liability. No one is perfect and no one ever will be. We are human beings and no matter how perfect we strive to be, we never will be, so we strive to be the best selves we can be.
If that’s not enough for others, oh well!

Until next time,
PEACE

B

From Stimulation to Loneliness

When I give my presentations, I speak about “Living Well” with Alzheimer’s Disease and the lengths I go to keep my life on track. and organized. I talk about my girlfriends, “Siri and Alexa”, (it makes everyone laugh), and how they tell me when to check my blood sugar, when to take my medications, when to eat, when to bathe (yes, I still need to be reminded to take a bath) and a multitude of other things.

I also talk about my travels. Whether it’s a Dementia-Friendly Cruise where I not only speak while onboard but fortunate enough to see some amazing sights. I talk about speaking at and attending Alzheimer’s and Dementia conferences where I’m surrounded by like-minded individuals who wind up being my friends, not just acquaintances, but real, caring, special friends who I stay in contact with and they with me.

I also talk about the powerful tool that music is and how I use music to keep me calm on anxious days or make me happy on sad days or just listen to it to make me smile.  A few years ago, my friend, Wilk McKean, asked me to join his music group, “Dr. Breeze.” We sing around the Pensacola area but my heart really swells when we sing at Senior Care Communities. There is no finer moment than to see their smiling faces, their feet tapping, their hands clapping and their voices joining ours as we sing familiar songs.

The one constant associated with performing at these Senior Care Communities is one of the same questions I am continually asked . . .
“How do you keep going back to these “places” to sing. Doesn’t it make you feel weird?”
(I already know what’s coming next but I ask anyway)
“What do you mean by, “weird?”
They say, “Well, you could wind up in a place like that. Doesn’t that scare you?”
I very calmly reply, “NO, because if I do wind up in a “place” like that, I hope someone like me or a group like Dr. Breeze, comes in to sing for me.”
The only answer that comes out of their mouth is, “OH”!

What I don’t talk about, the one thing that is so very hard is LONELINESS! If you didn’t know that Loneliness and Dementia are very common, please feel free to GOOGLE Loneliness and Dementia. Don’t worry, there are only about 43,000 articles that pertain to this subject. Get comfortable, it will take a while to get through them all.

I don’t usually talk about LONELINESS because . . . I HATE IT! I DREAD IT.

People that know me find it hard to believe that I am a very lonely person. The majority of my friends only see me in social circles and when I’m in those circles, I’m not lonely.

I realized, by not talking about loneliness, I am doing a disservice to my audience. Selfishly, I don’t want anyone to see me as a lonely person and I definitely don’t want anyone feeling sorry for me.

Yesterday and today were very lonely days for me because I had just spent 6 wonderful, educational and fun days in Louisville, KY at the Pioneer Network Conference. The Conference was amazing. There were over 800 Educators, Speakers, Care Partners, Exhibitors and Individuals Living with Dementia-Related Illnesses, all gathered together in one place with the sole focus on Pioneering a New Culture and Facilitate Deep System Change in the Culture of Aging.

It was an incredible experience. I saw people I hadn’t seen in a year or so, met new people from all over the U.S., Canada, and other locations throughout the world. 6 days of positive energy. 6 days of like-mindedness. It was incredible.

Then Thursday came. Everyone was leaving. My friends, my new friends, my special friends, all going back to their families, their places, their homes. I tried to stay positive as I hugged everyone good-bye but it just got too much. I broke down and embarrassed myself a bit.

All I could think of was I was coming home to emptiness and that is something I don’t handle very well. I live by myself voluntarily. I feel it makes me stronger to be the one responsible for all that is me. Sometimes, things don’t necessarily work out the way you want them to. I did have raised expectations of some phone calls and or emails coming through but it wasn’t to be. I just have to figure out a way to not let loneliness overtake me. It’s no one’s responsibility but my own.

I know one thing I will start doing . . . I will include loneliness as part of my presentation.

Thanks for reading. If you feel this will help others to have a better understanding of loneliness or anything else, feel free to share.

Until next time . . .
PEACE!

B

 

Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B