Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

13528784_10208116077473971_837420341758672808_n
Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

The Disease that Keeps on Taking

This morning when I opened up Facebook, I saw I had a message from a good friend of mine. It read, “My thoughts, love, and prayers are with you today.”
I thought to myself, “How very nice of her to say this.”
Then I read it again and thought, “This is what people usually say when you’re having an operation or you’re starting a new adventure or when you lose someone.”
So, I wrote back to her saying, “Thank You, but why do you say this today?”
Then I looked at the date, January 14th, and tried to think of anything that happened on this day.
Sadness all of a sudden overtook me.

10830689_10204543352758086_1036799725875045458_oI walked over to my desk to look at my “reminder board” and at the top are 2 Prayer Cards from the funeral services of my Dad (2/8/10) and Mom (1/14/15). I knew before I looked but I had to verify, not just that today was the 1 year Anniversary of my Mom’s death, but to realize I had forgotten.
Hours later as I am writing this, tears still flow, not just because she is no longer of this earth but because of the disease I share with her, the disease that took her mind and memories, that same disease that is now taking mine . . . Alzheimer’s.

You know, it’s strange how the Alzheimer’s mind works. The memories don’t come back on their own. A bit of prompting is needed. So, as I sit here trying to remember details of that day, the one and only memory that comes to mind is of a phone call from my sister.
When I first saw her number pop up I froze. You see, my Mom had a stroke a week or so previously and she could no longer chew her food, or swallow for that matter, so a decision was made to allow her to be comfortable and pass away in peace. (This may not be exactly factual but it’s the way I remember it and that’s good enough for me.)

Anyway, my brothers, my sister, my nieces and nephews all went to say their goodbyes10931127_10204543328837488_6014411360357330344_n but my Mom, who always had a strong will, just kept hanging on, as if she was waiting for something. That is what prompted my sister to call.

You see, I live in FL, I was just diagnosed with Early-Onset Alzheimer’s about 2 1/2 months previously and I was only driving sparingly. Making a trip at that point was not possible.
Anyway, my sister called and said, “Everyone has been by to see Momma, everyone but you. I know you can’t be here physically but I think she is holding on to hear your voice. I’m going to put you on speakerphone and I want you to tell her good-bye and that it’s OK to go.”
It was the hardest, yet the most beautiful thing I have ever done.

So, I had a “one-sided” conversation with my Mom. I told her about my Alzheimer’s diagnosis and since we shared so many things in our lives (I was the youngest and a bit spoiled by my Mom and my sister) why not share Alzheimer’s as well.  I told her how well I was being taken care of by Shannon, Asheton and Bradley and how I couldn’t feel more loved.
I then told her that it was OK to go. It seems she had taken care of so many people during her lifetime that maybe she felt she still had more to do. I let her know that everyone was in a good place and that she could now go where she could finally rest. (like I said before, this may not be EXACTLY what I said, but it’s what I remember).

My sister told me that while she was listening to my voice, there was eye movement under her eyelids as if she was aware. I’m not sure if that was possible but because we know so little about Alzheimer’s, anything is possible. I don’t remember if I sang to her to her or not (we shared a love of music as well as singing) but I would like to think I did. I told her I loved her and then spoke to my sister gain.

A few hours later, I received another phone call to let me know she was gone.

As hard as I try, I don’t remember anything of the days that followed. Maybe that’s a good thing. I’m sure they were filled with sadness and I’m probably better off not remembering.

All of this makes me wonder . . . “Do people in the last stages of Alzheimer’s still hear and understand but just can’t communicate back?” I hope so. I hope I can still hear the voices of my loved ones when my time comes. I want to hear their voices and music and all the things that make me happy. I can only hope.

Next year, I don’t know know if I will forget this day again but if I do, I hope someone will remind me. For now, for today, while I still do remember, I will think fondly of the woman who . . .
– gave me life
– taught me to always open doors for people – especially ladies and the elderly
– to say yes sir and yes ma’am
– taught me to always carry a handkerchief
– shared with me her love of music and gave me my singing voice
– loved me unconditionally and with all her heart

I love you Mom and always will.
Rest in Eternal Peace. Hope Dad isn’t bothering you too much and I’ll see you soon.
At that time, we’ll find some place to sit, put on the Sound of Music soundtrack, sing and reminisce . . . clearly.

Until then, I will keep on keepin’ on, trying not to burden Shannon and the kids too much and continue doing what I do and I do it in honor of YOU!

PEACE
B

 

 

 

 

 

 

The “IS” is Now

The “IS” is Now

At this time of year, most everyone starts looking back at the past 12 months with wonder as to where the time has gone. Please don’t think I’m more confused than I already am. I know it’s Christmas Eve and not New Year’s Eve. I’m just getting a jump start.

You may be thinking:
Were my New Year’s Resolutions successfully carried out?
Were plans, made early in the year, brought to fruition?
Did I become the better person I set out to be?
Why didn’t I start that Christmas Saving account like I planned?

It’s the natural thing to do. It helps to look at the un-dones and positively plan for the future, a future we don’t know.

As for me, Alzheimer’s has taken away my abilities to look at the immediate past with clarity. I’m not saying that for you to feel sorry for me, I’m just letting you know. I can see some of the past but most of it is guesswork.

The phrase, “You cannot change your past” comes to mind so there’s really no use in looking back or dwelling upon the “what if’s!”
So I look for the postive’s in having Alzheimer’s. It helps get me through each day. You see, the only thing I can do at this point is to “Live in the Moment” and enjoy those moments to the best of my ability.

So, on this Christmas Eve . . .
I will not look to the past for accomplishments or miscues
I will not look to the future for I have no idea what waits for me

I will look at the beautiful face of the woman who has pledged her love and life to me and be so very, unbeleievably thankful she has put up with me through all of this.

I will look at the faces of my 21 and 15 young adult children who each and every day day give me not only their love, but their support, kindness and patience.

I will think about my 28 year old son and the young man he has turned out to be.

I will think about the little, tiny Yorkie-Chihuahua fur ball named Dallas who has made such a difference in my every day life.

I guess not having the ability to look at the past makes it easier to look at the here and now. The past is what we had, the present is what we have now and the future, well, there’s no certainty as to what we will have.

So, if you like, you can join me on this Christmas Eve, not thinking about what was, or thinking about what will be, but instead about what is. The “IS” is right here, right now.
Enjoy It . . . Experience It!
The “IS” is now!

Until Next Time,
PEACE and Merry Christmas!

B

 

 

The One Good Thing

The One Good Thing

The one good thing, if there is such a thing, about having Early-Onset Alzheimer’s is the long term memories are still intact. They pop up at any time, day or night, with no rhyme or reason. They are just there like an old friend, ready to reminisce and bring a smile.

At 55 years old, I have a lot of memories floating around in my head. Being it’s the Christmas season, those memories are of growing up with my brothers and sister, racing to the Christmas Tree on Christmas morning to see what Santa brought us. Mag_transRED_AM-62_webI’ll never forget my first transistor radio. 1968. It was red with a black, leather covering. I asked my brothers what station I should listen to, they told me and the first song I heard was “Sky Pilot” by The Animals.
My Mom tried to suggest I listen to talk radio. lol  I stuck with the music!

A few years later, I got a green bike with green, metallic banana seat. It seems all the kids in the neighborhood got new bikes that year and despite the cold wet weather, we had to go outside and ride them.

Another year was walkie-talkies.

I remember my favorite toy of all time…a milk truck. When the door opened, a milkman swung out holding a bottle of milk. It was made of cast iron. My sister, whom I love and adore with all my heart, sort of bent my milk truck. I won’t say how, but the little milkman never swung out the door again!  😦

Then there was the Christmas, once we were older, my oldest brother got us all silk underwear. We still don’t know why, but it was a great gift!!!!

After a number of years, I started gaining weight . . . a lot of weight, enough to take on the role of playing Santa Claus. That was a lot of fun but putting on that Santa suit in the humid Louisiana December weather was no picnic. I lost about 10 lbs inside that suit.  🙂

My Mom loved the Christmas Season and she made it so special. Right after Thanksgiving (you remember when there were no Christmas decorations

IMG_2291 (Edited)
This is a pic I took of one of the actual albums my Mom used to listen to. They were distributed by GoodYear and Firestone 

displayed BEFORE Thanksgiving)

she would start playing her Christmas albums, singing along with Andy Williams, Johnny Mathis, Mahalia Jackson, Barbra Streisand, Steve Lawrence and Eydie Gourme, as my Dad climbed up in the attic, cursing, yelling, hitting his head while getting the Christmas decorations down.

 

On Christmas Day, Mom would break out the “once a year Christmas China.” She had just enough for the adults while the kids ate at the kids table, eating off the everyday plastic plates. I felt so grown up when I was not only allowed to eat off the Christmas China but to sit at the grown-up table. The food actually tasted better! But, enough about me.

We have a saying in our family that no holiday or family get-together was complete unless my Dad (who was known for his temper) didn’t get pissed off at someone or something.

One Christmas, I don’t remember the exact year, but it was probably in the 80’s, my Dad, as usual, got pissed off at something. One by one, my brothers (I have 3) their wives and my sister all headed for the smoking spot (the front porch) to have our “after dinner smoke.” Of course, the topic of conversation turned to the times Dad would get pissed off. We laughed and laughed and were having the best time when the front door opened and my Mom came outside. We all quieted down and looked at her. She looked at all of us with such a serious look on her face and said, “I sure wish I smoked, but I gotta go back in there!”
We lost it. She started laughing. As she walked back inside, she turned around and said, “oh sure, y’all just stay out here and laugh!” with a smirk on her face, which made us laugh even harder. That was my Mom.

She had such a great sense of humor. I guess she had to, being a stay-at-home Mom, having 5 kids in a 10-year span. She had to find the humor in anything she could. In my opinion, she loved Christmas the most. She knew the family would all be together and she would fix our favorite things. She got joy out of that.

Although Alzheimer’s affected her memories and all else that came with it over the last 10-15 years of her life, I hope some of her long-term memories were still there. I hope they brought a smile and a warmth to her heart.

Being the youngest child, my Mom and I shared a lot of things. Music is my favorite . . . Alzheimer’s is my least favorite, but I like to think that my Mom, being my Mom, somehow knew I would be the one to share her Alzheimer’s so she showed me how to live with it gracefully. When it gets tough, and it does (I’m not always the happy person you see in pictures and unfortunately, I do have a bit of my Dad in me that comes out every once in a while) I feel her with me, calming me down.

My Mom also collected bells, little decorative bells, some bigger bells, she just liked them.01043e4af1cb1845977d37e9119f4c5ba7a4af24da

Thanks to my wife, the bells continue to ring. Since we have a love for
Disney, she combined our interests and gets Disney Bells every year for the tree. I can’t tell you what that means to me. I hope that tradition continues within my family for years to come.

This will be the first Christmas Mom will not be of this earth. My Dad passed away 5 years ago so at least they are together again. I just hope he has learned to calm down a bit. But if not, I’m sure Mom will take a walk out to the front porch, breathe in a breath of fresh air and go right back in to calm him down.

Merry Christmas, Mom . . . and you too Dad!  🙂

This is from one of my Mom’s Christmas albums:
Doris Day –  Silver Bells

ENJOY and have a Very, Merry Christmas!

 

Happy Thanksgiving

Happy Thanksgiving

Thanksgiving. A day where we pause for a moment to give thanks. Give thanks for what? We give thanks for everything big and small, important and insignificant. We give thanks for life!

What that life is, is totally up to you!

If you determine your quality of life, based upon whether you’re rich, poor, healthy, ill or somewhere in between, your rating scale is off. Money cannot and does not buy happiness, it buys material things. If material things make you happy, and you surround yourself with these things, then fine. However, a materialistic world often blurs the realism of life. Just remember, we were all born into this world the same way and we all go out of this world the same way . . . penniless.

This reminds me of the poem, “The Dash” by Linda Ellis.
(here’s a link to them poem:The Dash)
The dash is the little, bitty mark in between the date we were born and the date we die. Although not nearly as big or prominent as the dates on either side, it is the most important.

Two stanzas of Ms. Ellis’ poem stand out for me:

For that dash represents all the time
that they spent alive on earth.
And now only those who loved them
know what that little line is worth.

For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, on this Thanksgiving, I give thanks for my life, my dash.
Is it perfect? NO, but nothing ever is.
Is it hard? YES, but nothing worthwhile ever comes easy.
No matter the imperfections or the hardships, I wouldn’t trade my life for anything. I consider myself the luckiest and most loved man in the world, and for that, I am THANKFUL!

 

Welcome to the Dark Side

Welcome to the Dark Side

When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.

Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.

Welcome to the Dark Side!

Below you will read an excerpt from a presentation I recently gave:

(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)

Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.

I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it,  but it sneaks up on you like a sucker punch.

Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!

You fall to the mat, you hear the Referee start the count … 1,2,3 …

you try to get up,  but you can’t move, you’re just numb … 4,5 …

you shake your head trying to get a little bit of  clarity … 6,7,8 …

the numbness starts to fade … 9 …

you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”

You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.

You find a strength you never knew you had and you rise to your feet before the count gets to 10.

Now I know that was a bit dramatic, but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.

My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”

Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.

You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!

I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!

So, each and every day when I wake up, I get up and make a difference.

It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.

I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.

I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.”  Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.

What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before.  I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.

One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.

Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.

When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me.  I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.

This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book!  😉

The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.

I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.

They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.

 

Until next time,
PEACE!!!

B
Pensacola, FL

There’s a Reason it’s Called: Taking the Easy Way

There’s a Reason it’s Called: Taking the Easy Way

As each day begins, we are faced with a decision . . . “Am I going to take the Easy Way or the Hard Way?”

Most of the time, this is an unconscious decision, however, if we are having a rough morning, we may “consciously” ask ourselves that question.

“The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty.”
— Winston Churchill

For me, it would be very easy to just sleep the day (and night) away and let my Alzheimer’s World just pass me by, not having to face things that normal-brained people don’t even have to think about. For instance, I now have an alarm on my phone that goes off every morning, noon and night to eat. Yes . . . to eat.

On a recent visit from my sister and brother-in-law, my sister noticed I had lost a good bit of weight. She asked about my eating habits and I told her, for the most part, I was eating very healthy. Shannon, my wife, said, “when he remembers to eat.” Hearing it said out loud, I came to the realization that I had been forgetting to eat on a regular basis. You would figure your empty stomach sends a message to your brain that says, “FEED ME!” My stomach probably does that but my brain forgets to tell me.

So in addition to the alarm telling me to eat, it also tells me when to take my medicine(s), when to get on my ALZ Assoc conference calls, when to read my emails, etc. Thank goodness for the alarm function on my iPhone.

“I will always find a lazy person to do a difficult job because he will find an easy way to do it!”
— Bill Gates

Then there are the decisions as to how I will spend my day. Since driving is out of the question (I very rarely drive due to my ability to get lost, which makes me anxious, which makes me not want to drive because I may harm myself or anyone in my truck or other people on the road) I have to think of what I can do to stay productive. With the “Walk to END ALZHEIMER’S” approaching, I tell myself to get outside and walk “Dallas the Dog” to get myself prepared. Sadly, I forget to do it. Ironically, when I do remember, it’s raining. No, it’s not an excuse, it’s just how it is.

Advocating is the one thing I do daily, whether it is a speaking engagement or through Social Media. When I have a speaking engagement, as Shannon says, I come alive. I think it’s because I go into “work mode”, falling back on the times when I was working in the role of my Public Relations role. In a way, Advocating for Alzheimer’s is a Public Relations role for I am educating and making people aware of Alzheimer’s. It becomes second nature to me and there is no thinking involved. It’s when the Advocating is done is when I have issues.

“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
— Theodore Roosevelt

So, in retrospect, for the past 55 years, I guess I have had a pretty easy life. Sure there were hard, tough times (broken bones, 5 knee surgeries, gallbladder removal, divorce(s), 3 heart attacks, back surgery, neck surgery, to name a few) but it was never as hard as it is now. You see, before now, all of my “ailments” were curable. I knew with a little rehab, I would be up and about and continue on. There’s no rehab for Alzheimer’s.

Each day is a rehab day for me. I try so hard to reconstruct the day before. I know I should write things down so I won’t forget but trying to remember to write things down so I can remember them the next day or the next week is hard to remember. It’s quite a conundrum. I sort of know how Bill Murray felt in “Groundhog Day.” Each day, although it’s a new day, seems like the day before yet, with not so many memories. I know that may seem hard to understand, but it’s the best way I know how to explain it.

The Dictionary is the only place that success comes before work. Hard work is the price we must pay for success. I think you can accomplish anything if you’re willing to pay the price.
— Vince Lombardi

So, I will keep plugging along, trying my best to remember things, but I will never give up, i will never stop fighting, and I will NEVER take the easy way!

Until Next Time,
PEACE!

B