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 . . .

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

 

What do “YOU” want your Care Partners to know about You

When you hear someone talking about the future and the plans they are making as to where they will be living, who will be taking care of them,
and how they will be taken care of, do you think to yourself, “I won’t need care. I’m in great physical shape, I am of sound mind, my spouse/partner and I have a great relationship so they will be able to take care of me if something goes wrong.

Scenario #1 . . . 25 years later. You Spouse/Partner is no longer with you. You have developed a Dementia-Related Illness and the time has come that you
are no longer able to live and care for yourself. You enter into a Care Community where no one knows you, no one knows about you and you are unable to tell them anything about your past. They have to figure things out the best they can as to how you would want them to care for you.

Scenario #2 . . . 25 years later, you develop a Dementia-Related Illness. Your Spouse/Partner finds it difficult to care for you at home. The 2 of you had already made plans as to where either of you would go in case the other spouse was not able to properly care for the other. The two of you also made videos years before . . .

One video was made for your future CarePartners as to what your wants, needs and wishes are, and the other video was made to your Spouse / Partner as to what your wishes are from them.

I have to say, the couple that made the videos were much more prepared than the couple that did not.

The reason I am writing this is because, at almost 60 years old and Living with Alzheimer’s Disease, Vascular Dementia, Type 2 Diabetes and underwent a Triple Bypass last year, I know that my time on this earth is precious and I want things to be in order when my time comes to move into a Care Community.

Just last week, I made 2 videos . . .
One to my future Care Partners and one to Maureen, my Care / Life Partner.
The one to Maureen was extremely hard and emotional but necessary. You see, sooner or later I will not be able to tell her how much I love her, I won’t be able to tell her Thank You for all she has done, and continues to do, for me. I want her to continue hearing my voice, telling her what it means to have her in my life. The other reason is she asked me to record my voice telling her that I lover her. You see, we both will reap joy from these little messages.

I’ve also asked her to sneak in some Peanut Butter, Ice Cream, Chocolate Covered Almonds, Starbucks Coffee (Venti, Pike Place, 3 Splenda, and half n half . . . just in case you want to come visit me when/if Maureen can’t make it.)

I know you have heard the phrase, “it’s the little things that make the biggest difference” but they really do. Being prepared with a plan for the
unforeseen future, being prepared with a Life Care Plan which includes Advance Directives is, what I would define as, mandatory.

The second video I made was to my future Care Partners. I told them of my love for music and how it lessens my times of anxiousness. I included some particular songs from my favorite artists and my favorite genres.

There’s nothing like listening to New Orleans Jazz Greats Al Hirt and Pete Fountain, the heavenly voice of Aaron Neville and the funky sounds of the Neville Brothers and the Meters. I had to include my country fav’s Tim McGraw, Kenny Rogers, Tracy Byrd, Dolly, Reba and Faith, just to name a very few.

I told them of my favorite foods . . . Peanut Butter, Cheerios, Coffee (duh!) Yes, I can (and have) survived on those foods and yes, I know I am
Type 2 Diabetic but you know, considering all else I will be going through, I don’t think a little peanut better and Cheerios will matter.

I also asked them to take me outside so I can feel the sun on my face and so I can take photos. I take a lot of photos for they help me remember
where I have been. I also know that when I look at photos, I may not remember where I have been but, as Maureen once told me, I can experience the warm feelings I had when I took the picture.
By the time I enter a Care Community I plan on having albums and albums of photos that will bring many, many fond memories and beautiful feelings.

Finally, I made one final request and I have included this is my video to Maureen. On my last day upon this earth, I have requested to have Maureen by my side.. Before she kisses my good-bye, I would like for her to put a little bit of Peanut Butter on her lips. Hopefully that will bring a smile to both of us.

You may notice that I tend to sprinkle my blogs, stories, conversations and other posts with humor. It’s not that I am making a joke about the things I write, it’s that I have found that a little bit of humor eases the seriousness of things. I have asked my future Care Partners to joke with me, share jokes with me and don’t be so serious all the time. In my humble opinion, laughter is a necessity of life and it also can ease the tension to make things a bit more bearable.

It’s also why I have decided to be cremated instead of having people standing in line to look at a version of who I once was. I don’t want my “Celebration of Life” to be a sad, solemn occasion. I want music to be played, I want food and alcohol, (and Starbucks Coffee) I want my guests to have 1 final celebration with me before my ashes are placed in a planter and I become part of a beautiful tree.

I hope you can take what you have read here and incorporate some or all the things I mentioned into your future Care Plan. These are mere suggestions for you to use or not. Either way, please make a plan for your future and make sure it is YOUR plan. No matter how many friends or family members you have, YOU are the one that knows YOU the best. If you wait for too many tomorrows to come around, well, let’s just say, don’t wait until it’s too late!

Until Next Time,
PEACE (and Starbucks)
Brian
#planforthefuture #dontwaituntilitstoolate #knowme #teamworkmakesthedreamwork

Why I Do What I Do

From the moment I was diagnosed with Alzheimer’s Disease, I was stigmatized. You’ve probably read about the number of ways I was stigmatized, but the one that stung the worst was when a close family member told my sister they thought I was faking my disease to get attention. Yes it stung, but after being diagnosed 4 times by 4 different Neurologists, I didn’t worry about it anymore. It still stings a little bit but that’s ok, they don’t speak to me anymore.

Yes I’ve progressed a bit but not to the point where I need 24/7 assistance. In my mind, I’m a long way from that. I owe it to keeping busy, using Music Therapy as a mood Stabilizer and living an active lifestyle with Maureen. We also spend our time traveling around the country and beyond Spreading Dementia / Alzheimer’s Awareness from the perspective of the Care Partner and Person Living with Dementia.

You see, we’re not homebodies. We like to go places. If you follow us on Social Media you’ll see where we’ve been in such a very short time. We travel quite quite a bit for leisure and for speaking engagements. wherever we go, I take photos, not just to take them but for memories. I know I’m going to get to the point where my memories will start to fade, both from age and Alzheimer’s so I am preparing for that. I am going through my photos and placing them in albums. I may not be able to remember (without assistance) where the photo was taken but, as Maureen always, “you may not remember being there but you will remember the feeling it gave you.” That part has already started so I’m glad I started creating my albums.

I also mentioned how music stabilizes me. Pardon me if you’ve heard me say this before or read it before but music is AWESOME. Use this for an example … think of a song you used to know very well, maybe something from your early teens or prior. If you think about it, you may not be able to recall the words but the melody may come to you in bits and pieces. Now, go to iTunes or Google Prime Music and put the name of the artist (if you remember) or a part of the title or whatever you can remember. Once you find it and listen to it, let me know how it made you feel. Furthermore, let me know how much of the lyrics you remember. I have downloaded songs from the 60’s and 70’s and amazingly, I remember 85% to 90% of the lyrics. Thank goodness for my long-term memory bank. The joy that comes flowing through your mind is euphoric. Even if you don’t have a Dementia-Related Illness, try this. I think you’ll be glad you did.

The thing is this … those of us who I know who are Living with a Dementia-Related Illness are doing pretty well. Yes, we’ve all slipped a bit, we’re not as sharp as we once were but we manage. Our Care Partners help fill in the blanks but they also are there for the frustration, the melt downs, the anger. For us, we may forget those incidents by the next day … they don’t and that is difficult to manage. I don’t know one person who, is reminded of what happened or remembered on their own, doesn’t feel like crap. Trust me, we all wish it was always a bed of roses but when those thorns come out, it really has a huge affect.

Then there are the Hallucinations . Trust me, they are NOT fun. I can’t speak for everyone else but for me they are menacing. Maureen assists me in getting rid of them (we yell / curse at them until they disappear.) Hey whatever works.

So, as I may have said before, “Living with Alzheimer’s” is no picnic and it affects people in different ways. We all have to fight it in whatever way works best for us. When it’s not hitting us over the head, WE LIVE!!! WE LAUGH!!! WE DISCOVER NEW TALENTS and HOBBIES!!! As long as we remain “DEMENTIA STRONG” and not allow our disease to define us, we’re going to be OK for a little longer!

Until Next Time
Peace,
B

#DementiaStrong #AlzheimersDisease #DementiaRelatedIllnesses #AlzheimersAwareness #ThePowerofMusic

Changes in Lattitudes, Changes in Attitudes …

I know it’s been quite a long while since my last blog post but I had a lot of things going on in 2019. Please excuse my absence but know, my posts will now be more frequent.

As Jimmy Buffett sings, “It’s those changes in latitudes, changes in attitudes
nothing remains quite the same.”

When you stay in one place too long (or maybe I should say, when “I” stay in a place for too long,” it’s time for a change.
I spent the first 30 years of my life in New Orleans, LA. It was a great place to grow up. Mardi Gras, Saints, food, friends, phenomenal music, food, family, fun, food . . . (did I mention FOOD?) I mention food because it was a huge part of my life . . . 285lbs of huge and probably the cause of my Type2 Diabetes and Heart Disease, but I digress.

When 1990 rolled around, after a divorce, it was time for a change. I had met someone and she moved from New Orleans to Pensacola, FL (her home) and asked me to join her there . . . so I did. Sadly, that relationship ended 7 years later but I had grown to love Pensacola so, I stayed. I made new friends, found my niche in Public Relations and Marketing and was very happy.

Through a few more relationships, a diagnosis of Type 2 Diabetes, 3 heart attacks, a diagnosis of Alzheimer’s Disease, a brief move to Knoxville, TN, questionable decisions, neck surgery, back surgery and a triple bypass in July of 2019, the third 30 years was approaching. I had no idea what waited in store for me. Then, Maureen entered my life, at least that’s when I “THOUGHT” she entered my life.

I say Maureen entered my life in 2019, but unbeknownst to me, I actually met her in 2014 (I was married at the time) . . . again in 2015 (still married) … again in 2016 (still married) … again in 2017 (yup, still married), skipped 2018 (divorced) and then in 2019, well, y’all know how that story ended and is still being written! 🙂

From what Maureen says, it was all up to me.
I say, “I don’t remember meeting her until 2019″.
She says, (“WOW, guess you weren’t impressed”)
I say, “I have Alzheimer’s.
She says, “Your subscription for using the Dementia Card has expired and can no longer be used” and she wasn’t kidding.
I say, “WHATEVER” and roll my eyes!

What I’m trying to get at is I moved to Largo, FL in December of 2019 to start my life with my LIFE PARTNER. It’s ironic that in 1990 and 2019 (almost the 30-year mark) I made yet another move. What I can say is being a stone’s throw away from Tampa, St. Petersburg, Clearwater and an hour and 14 minutes away from the “Happiest Place in the World”, I have finally found my forever home and my forever person.

When I told some friends and family that I was moving 700 miles away, let’s just say I was “cautioned and reminded” about my past moves by those same friends and family. I was once quoted as saying, “if I ever say, ‘HEY, I’ve got a great idea. I’m going to pack all my stuff, drive hundreds of miles to a new place, to a city I have never been to, and start my life over again . . .” just reach over and slap the CRAP out of me and say, you stupid, stupid man, haven’t you learned anything?'”

Well, no one did that and I’m thankful for I am sure it was not going to be an easy slap. I also know they all meant well and I hold no negative feelings towards any of them. They were doing it all out of love and I appreciated their support . . . and still do.

So, here I am, starting over, AGAIN, and as you may have heard others say, “BUT THIS TIME IT’S DIFFERENT!”  this time, it really is different.

We are approximately the same age (“I won’t say who’s older by 7 months but it’s not me), we both love music, movies, family, we work out at the gym (she more than me but I’m improving), we love one another but we also like each other. We started out as friends and that friendship, as well as our love, strengthens daily. Has it all been a bed of roses? NO, but I have learned that sometimes, the hard/difficult things in life are so much more rewarding when they are conquered than the easy things.

For all the folks who were worried about me making this move, look at it from Maureen’s perspective. She was questioned also by the people who loved and cared about her.
“Are you sure you know what you’re doing?”
“You know he has Alzheimer’s, right?”
“Do you know anything about being a 24/7 Care-Partner?

Funny thing is, I also wondered if she knew what she was getting into. I told her:
“life with me can change by the day, the hour and the minute.”
“I forget stuff you may have told me yesterday, or an hour ago, or a minute ago!”
“I have Alzheimer’s anger which may or may not be directed towards you. I may not even know why I am angry.”

Her response to me solidified my decision to move.
She replied, “I love you. You are going to have to put up with me as well. I’ve been living on my own for 13 years! We’re just going to have to get used to it. Failure is NOT an option. Plus, now that all your stuff is unpacked, I ain’t helping you pack it up again unless we are both moving to a new place!
I just love it when she gets all sweet on me!

Just this morning, I came up with an analogy of who we could be compared to.
Maureen is like a Cheetah.
(The cheetah is the fastest land animal in the world, reaching speeds of up to 70 miles per hour. They can accelerate from 0 to 68 miles per hour in just three seconds.) As soon as morning comes, she is up, moving at lightning speed, moving in circles around me as I try to figure out what day it is.

As far as me, I’m more like a Sloth.Image result for sloth I move at an extremely slow speed for it takes some time for my brain to kick in, some days longer than usual. I just like to take my time, taking in the beauty of the day, taking photos and sometimes, just sitting and listening to music, letting the memories float in and out depending on the song I am listening to.

Maureen had to get used to that.

We also realized, upon watching the new (and old) episodes of “Mad About You” with Paul Riser and Helen Hunt, that our interactions are very similar to theirs. We laugh at them and then realize we are seeing ourselves in their characters and laugh even harder.

That is one thing we do a lot of . . . we laugh A LOT!

And so, the story of our lives continues to be written, one page, one chapter at a time, full of love, laughter, tears, and smiles. We still learn a little something new about each other every day and can’t wait for what awaits us tomorrow.

Now that 2020 has rolled around and we are both turning 60 this year, we realize the time we have remaining is NOT going to be spent just talking about the things we want to do. We are going to get out and DO the things we want and have dreamed about doing.
Yes, there will be pictures and stories to share on facebook and Instagram (thebrianleblanc)

Until Next Time,
PEACE!

B

 

STIGMATIZATION Strikes Again

(I know I posted this Blog Post several months ago but I wanted to post it again for it still struck a nerve with me. I also needed to correct some grammatical errors. 😎
There are some unbelievable, super-intelligent and Person-Centered Focused Neurologists and other Medical Professionals who I have had the pleasure to meet and learn from. I am a much more educated person because of them.) 

It’s been a while since I have been personally stigmatized. It was a good run! Sure I still hear comments like, “If I didn’t know you had Alzheimer’s, I would have never known,” but I don’t consider that Stigmatization. I actually consider it a compliment. It means everything I have been doing to keep my brain busy (i.e.speaking engagements, social engagement, word puzzles, daily exercise, listening to music) I’m doing what I need to do to keep my Alzheimer’s at bay.

In a recent conversation with my friend and someone who I consider a Mentor, Dr. Al Power, I was told the story of Christine Bryden. (I’ve included a link to her website below). Christine (who lives in Australia)  was diagnosed in 1995 with Dementia but has continued her Advocacy for 20+ years after her diagnosis. Christine has been a passionate advocate for people with dementia, addressing conferences around the world and appearing in the media.

At one such conference, Christine displayed a photo of her latest MRI. The MRI showed multiple bare spaces in her brain which prompted a Neurologist in the audience to interrupt her, saying, “That can’t possibly be your brain. No one with a brain that looks like that can possibly speak as well as you do.”
With no reasoning and by his own assumption, this Neurologist   “STIGMATIZED”   Christine, basically calling her a liar.

Christine continued her presentation.

(It is clear that Christine has considerable brain loss, but functions as best she can by writing, speaking and traveling with the enabling support of her husband, Paul.  She often says that if only people could see the brain damage, they would cheer the dementia survivors. Christine questions attitudes towards people with dementia, which can often be patronizing and demeaning, lacking in understanding of the difficult battle to cope each day with ongoing brain loss.
Christine is driven to continue her advocacy as a survivor, encouraging others to follow in her footsteps, speaking out to improve services and support for people with dementia at all stages in their journey from diagnosis to death.)
christinebryden.com/christine-now

I posted this portion to give you an understanding that Stigmatization knows no boundaries, is worldwide and doesn’t discriminate.

So now, for my “STIGMA STORY” which isn’t as severe as Christine’s but troubling all the same.

I was having trouble sleeping. I hadn’t slept but a few hours each night for about the past 3 or 4 weeks. So, thinking it could be something Neurological, I made an appointment with a new Neurologist. (my previous Neurologist had not done anything with me or for me in a number of years.) I was hopeful that my new Neurologist would be a change in the right direction.

He came in and it struck me how young he looked but I took that as a good thing thinking, maybe he has all the latest training and expertise regarding Alzheimer’s Disease. I learned quickly that looks really can be deceiving.

We exchanged introductions and he asked me what brought me in to see him. I found that to be a bit strange for if he had read my file, he would’ve known that information.
I asked him, “was that information not in my file?”
He replied, “I don’t know, I didn’t look.”
I left that alone and just started telling him of my sleep challenges.

During my explanation, I noticed he was looking at my file and not listening to what I was saying for he interrupted me, by asking . . .
Dr.  “you have Alzheimer’s Disease?” 
Me: “Yes I do!”
Dr.  “when were you diagnosed?”
Me:  “is that not listed in my file”?
Dr:   “I can’t find it.”
Me:  “It was October 2014.”
         HERE’S WHERE IT GETS INTERESTING
Dr.   “I don’t think you have Alzheimer’s Disease.”
Me:  “Ha Ha Ha! How did you come to that conclusion.”
Dr. 
 “well, you don’t talk like you have Alzheimer’s.” (I thought . . . WOW!!! he is good! He should go far in his field)
Me (being a smart-ass): Well, if you like, I can introduce you to a number of people who, like me, have been diagnosed with a Dementia-Related Illness who can speak just as well as I can and some, who can speak better than me.
Dr:  “I have spoken with a lot of patients who have Alzheimer’s and none of them sound like you.
Me:  “were they older than me?”
Dr.  “considerably yes, but that shouldn’t make a difference.
Me:  “I have to agree with you for I also know a number of people who are older and further along on their journey and you are correct, they don’t sound like me and I don’t sound like them.
Dr:  “I would like you to get tested again. I’m going to send you to
 Dr. XYZ, a Neuro-Psychiatrist. He is very well-known in this area and is an expert in his field.
Me:  “I have been tested 4 times.
Once by a Neurologist who didn’t know what to do with me, so after diagnosing me with Alzheimer’s Disease, he prescribed Aricept and Namenda which only gave me very bad side effects. After that, I never saw him again.
I was then diagnosed by 2 different Neuropsychologists. I had to be seen by them in order for my Social Security Disability Insurance to be approved. Both Neuropsychologists diagnosed me with Alzheimer’s Disease. During the second diagnosis procedure, I had to listen to the person who was administering the test tell me time and time again, “it’s OK honey, don’t be frustrated, even normal-brained people can’t do this!”
Finally, I was diagnosed by Dr. XYZ. Now, correct me if I’m wrong but you want me to revisit Dr. XYZ, the one you called “The Expert Neuropsychiatrist”. He was actually the 4th and final Dr. who ALSO gave me a diagnosis of Alzheimer
 ‘s Disease. Is that correct?

(I do want to say that since my Triple Bypass Surgery, I have more oxygen and blood going to my brain which has not only helped me retain information but also regain some of my short-term memories. This is why I am able to recall so much about this visit)

Poor guy, since he was unable to speak after hearing of my Neurological Diagnostic Journey, I decided to fill the quiet void.

“Since you have informed me of your expertise in diagnosing individuals with Alzheimer’s just by the way they speak, I would like to share with you “MY” expertise.

Shortly after I was diagnosed in 2014, I became an Alzheimer’s Advocate and Keynote Speaker. Since then, I’ve become an International Alzheimer’s Advocate where I speak throughout the United States as well as Canada.
(shout out to my Canadian friends . . . Eh?)

The topic of my talks vary depending on the venue, but the constant will always contain my lived experience with Alzheimer’s Disease. How do you think I’m able to talk about this topic if I wasn’t actually living it? I have people come up to me after my talks and thank me for explaining things I go through for I explain things their loved one can’t explain because they no longer have the capability to do so. I, and others like me, have become their voice. None of us living with a Dementia-Related Illness take this lightly.

For you to sit there without even taking the time to look at my file before walking in here and then start making accusations that I don’t have a Disease I have been living with for quite a while, is not only unprofessional but downright cruel. This disease robbed me from working, took away the ability to provide for my family, took away memories, made people who I thought were my friends disappear and many other things associated with having a Disease that is not only invisible but so very, very cruel.

Another topic I speak about is Stigmatism and the people that tend to stigmatize us just because we still look normal for the most part. They expect anyone who has a Dementia-Related Illness to go from diagnosis to late stages, to not be able to walk, eat, bathe, go to the bathroom and many other things without assistance. Oh, and they can no longer speak. So, in order for you to believe I have Alzheimer’s, I have to appear to have all the characteristics I just listed. Then and only then would you believe I have Alzheimer’s, without sending me for a 5th diagnosis.

Today, YOU became one of the people I speak about . . . A STIGMATIZER!
Today, YOU have become part of my story.
Today, and from this point on, YOU, a Neurologist, will be spoken about as to how you stigmatized a person who is living with Alzheimer’s Disease just because he didn’t fit into your medical mold. (out of respect, I have not and will not reveal his name.)
Lastly, TODAY, if it hasn’t happened before, you will see THIS person, who you stigmatized, walk out of this office and NEVER return because of your unprofessional, cocky and disbelieving attitude.

My hope is you get more education and more training as to how not to insult another individual who walks through that door just because you have an opinion as to what they should look and sound like. I think you need more training.

And yes, I did walk out, not slamming the door but closing it hard enough to make a point. (It would’ve so much better if I could have just kept walking but, I had to stop and ask directions as to how to find the exit.)

I sincerely hope NO ONE has to go through this type of experience. I know quite a few Neurologists who epitomize what a Medical Profesional should be. That is what I am hoping my next Neurologist will be. In the meantime, if you have an experience like I had, don’t be afraid to speak up and call them out. If we don’t, they will continue STIGMATIZING other individuals just because they don’t fit the mold.

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