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

World Alzheimer’s Day

Today is World Alzheimer’s Day.

It’s a day not so much to celebrate, but more for a call to Alzheimer’s Awareness.

It’s a day to make more people aware of Early Onset Alzheimer’s.
It’s still thought of as a disease of the elderly. those of us that have it, know this not to be true.

It’s a day to ignore the ignorance of some who use Alzheimer’s as a joke;
“accidentally deleted an e-mail . . . #earlyonsetalzheimers
“Forgot what day my birthday was on for a solid half hour #earlyonsetalzheimers”
Teenagers and young adults will, hopefully, one day, understand how serious this is.
Until then, it’s their right to remain ignorant!

It’s a day to call awareness to the families of individuals with Alzheimer’s.
They sometimes suffer more than the individual with the disease . . . they retain the memories.

It’s a day to remember our loved ones, our friends, our role models who fought the Alzheimer’s fight,
and in who’s honor, we, ourselves, pick up where they left off.

It’s a day to support those who have Alzheimer’s. 

The “First Day of School” Thing

The “First Day of School” Thing

I can still remember the days when the kids were small and how excited they were to start their first day of school, well, mostly Bradley . . . Asheton not so much. The morning would be busy with making sure lunches were packed, school supplies were in the backpacks, the-first-day-of-school-new-clothes were ironed (Shannon doesn’t let anyone walk out the door looking like, as she calls it, a raisin) and then we had to make sure we were ready for work. It was hectic. It was exciting. It was our life!

Thanks to the fact that Alzheimer’s has not yet taken my long-term memory, I can still recall these things.

Flash forward to today. It’s about 7:15am, Shannon is getting ready for work, Dallas and I are sitting in my recliner watching the news. I hear one alarm go off and then another. Doors start to open and close. I know Asheton and Bradley are now up and about and getting themselves ready for the start of a new school year. With Asheton in College and Bradley in his Sophomore year in High School, it’s a far cry from when they were small.

Shannon leaves for work, Asheton and Bradley are talking in the kitchen and instead of cereal and juice, it was coffee and anything in the refrigerator they could either eat standing up or in the car on their way to school. (Asheton now drives Bradley to and from school because my driving is limited to just around the immediate area.) They hug and kiss me goodbye, get in Asheton’s car and away they go.

I know working parents have looked forward to this “First Day of School”  for they don’t have to worry about summer day-care; being concerned with who’s doing what to who and why; settling arguments over the phone and all that goes on at the house during summer break.
Then there are the stay-at-home parents that once the kids are out the door they may breathe a big sigh of relief; dance a jig; excitedly make a grocery list so they can go shopping ALONE; have the computer/laptop/iPad/Tablet to themselves; pleased to not hear, “MOM! / DAD! every 5 minutes.

I know I’m generalizing and this doesn’t pertain to everyone but you get the picture.

I included the sentence above because the above scenarios do not pertain to me.
I’ll tell you why.

I have found with Alzheimer’s, I don’t like being alone. I’m pretty sure I have not liked being alone all my life so I will say instead, Alzheimer’s has MAGNIFIED my desire to NOT be alone.

Having Dallas around has helped me cope with my loneliness a bit but, although Bradley and Asheton spend the majority of their time in their rooms, I’m comforted in knowing they are here. I’m not sure they are as comforted as I am for I sometimes tend to hover. I don’t mean to do this but from researching the topic, I have found that hovering is a side effect of Alzheimer’s. Our loved ones, especially our spouses, tend to be a sort of “security blanket.” I guess when Shannon is not around, I then turn towards Asheton and Bradley.

I tell them to tell me so I won’t do it but since my short-term memory short circuits, I continue to do it. They do tell me at times and they do it politely so as not to hurt my feelings. When I catch myself, I back off on my own. I get mad at myself for doing this because I know they all value their privacy. That makes it a bit difficult when you have 1 person who is dependent upon the other 3. The last thing I want to do is to be more of a burden on them than I already am. It’s a slippery slope this dependent thing.

So, this “First Day of School” thing has me feeling a bit anxious. I know they have told me their schedules and such but if I don’t write it down it becomes like dust in the wind. Well, I forgot to write things down. DUH!!!
Shannon, Asheton and Bradley are very good about keeping me informed of schedules and such so my anxiousness levels stay at a minimum. Since Asheton tends to write these things down for me, I will have her write some things down on my message board when she gets home. (of course I will have to make a note to remind myself to ask her to make a note. Geeeezzzz this gets to be exhausting.)

Anyways, when I am anxious or, experiencing some other emotion, Dallas sticks close to my side. I am more than thankful for his presence.  The link below is a video I made about this subject.

The advantages of having a pet when you have Alzheimer’s
https://www.youtube.com/watch?v=WX7sWgtiFHA

So, this “First Day of School” thing has changed a bit over the years. This is due the ages of these young adults who live with us and because of my Alzheimer’s. The thing that gets me through it all is my support system, the BRASH System. (BRadley, ASheton, Shannon) Yeah I know, I still have some of my creativity left.
As a side note, if you ever want to see how much of unnecessary knowledge I still have, come by and watch Jeopardy with me. For some reason, I’m really good!  Lol

So, whether you’re a working parent, a stay-at-home parent, or anyone else who has the job of raising these wonderful human beings called children, I hope your, “First Day of School” thing was a good thing.

Until Next Time,
PEACE

I Have Alzheimers, BUT It Doesn’t Have Me!

A Day in the Life

A Day in the Life

Busy Sidewalk
Picture yourself in a movie. You’re standing on a sidewalk…in a big city…at a busy intersection. You look around, everyone and everything around you is flying by at the speed of light. You try to concentrate but everything is “blurry-like,” happening so fast, concentration evades you.

Well, if you’re like me, you’re not in a movie. You’re in reality, under the age of 65, living with Early Onset Alzheimer’s Disease or some other form of Dementia.

I know I can’t speak for everyone, for everyone’s situation is specific to that individual, but I’m pretty sure certain similarities can be found.
For instance, you’re at a family gathering. These are people you grew up with, spent most of your life and time with, laughed and cried together, supported one another in times of need. You get the idea. Now, you’re sitting on a sofa, surrounded by these very familiar people and you cannot get into the conversations. You hear what’s going on and, under “different circumstances,” you would’ve jumped right in to add a comment, an insult or a funny remark, however, by the time you are able to form a complete thought, the conversation has continued at light speed and your comment or funny remark would’ve made no sense. Or worse, when you do try to jump in, you stutter so bad, everyone turns and stares at you. So you just sit . . . and listen . . . and try to keep up.
I experienced this at Easter this past year. One of my brothers-in-law noticed my embarrassment when I stuttered trying to jump in the conversation. ” He came up to me and said, “Hey, we’re all family here. Nobody’s going to judge you. Stutter away!”

This also happens in everyday life. Conversations with your immediate family are often interjected with, “you’ve told me that before,” or “oh, I remember when you asked me about that yesterday.” They do it in a way that is not insulting, but just as a way of saying, “we understand and we love you.” At least that’s what my family does with me.

I try to find humor in this by saying things like, “I know I told/asked you yesterday, I was just double checking. DUH!” Or when my wife and I are watching a movie and I get so excited or crack up laughing at a certain part, she will turn to me andLaughing say, “do you not remember seeing this movie a couple of weeks ago?” I say “no” but then I say, “you know, me having Alzheimer’s will save you a lot of money. You can buy me only 1 movie and I will watch it every few weeks and it will be like seeing it for the first time!”

Some people don’t understand humor when it comes to Alzheimer’s but, when you’re making fun of yourself and not others, well, I don’t see anything wrong with that.

I have always loved and embraced humor. Thankfully, my friends and family know and understand this and laugh right along with me. They send me jokes, funny sayings, cartoons … all Alzheimer’s related.
When I sent an e-mail to my brothers and sister, telling them of my diagnosis, my oldest brother sent back a response saying, “just letting you know, you sent this yesterday also.” After laughing hysterically, which I needed to do in such a bad way, I knew things were going to be OK.
One of my childhood friends will say, “hey, do you have that $20 you owe me?” Of course, I immediately go into panic mode, trying to remember whenI borrowed $20. This is a friend that will drive 3 hours, each way, just to come spend a few hours with me.

Then, as the saying goes, “Along with the GOOD comes the BAD!”
This is what I call my dark or foggy times. It happens with no rhyme or reason. It just comes along, punches me in the face and, well, things get a little dark.
AloneIt’s sort of like spontaneously combusting, except I burst into tears instead of fire.
I’ve always been an emotional person but since developing EOAD (Early Onset Alzheimer’s Disease) it has heightened the emotion. Something could set me off as simple as a baby or puppy video. Or, a fond memory will pop into my head of “happier, more normal times.”
Watching a sad or emotional movie? FAGHETTABOUDIT!!!! I literally fall to pieces. I cried for about 20 minutes after watching “American Sniper” with Bradley Cooper. (if you haven’t seen it, it’s a must see, but, I digress)
Then there are the times when I don’t know why I’m crying or even when I’m crying. Tears are now just so commonplace, I don’t even recognize that they are streaming down my face. Bizarre, I know, but Alzheimer’s is a very bizarre disease.

I know I’ve probably said this a lot (and yes, I do remember saying it over and over again! lol) but I am not saying all of this to gain sympathy.

I DO NOT WANT SYMPATHY NOR DO I WANT ANYONE FEELING SORY FOR ME!

I am merely trying to give you a perspective of what a day in my life is like.

DO ALL OF THESE THINGS HAPPEN MULTIPLE TIMES A DAY? YES!
EVERY SINGLE DAY? NO! (but more than not)
DO I WISH THIS ON MY WORST ENEMY? NOT “NO” BUT “HELL NO!!!”

I took on the responsibility of becoming an Advocate for Early Onset Alzheimer’s Disease. I don’t have the world stage of a Maria Shriver, Seth Rogen or other folks who are able to advocate in a much bigger way than me but, I do what I do for it is my passion.
In my Advocacy speech I say, “this is the best job I have ever had in my entire life . . . that I don’t get paid for!”
Trust me, due to my Alzheimer’s Disease, I’ve met some of the most wonderful, courageous, artistic, compassionate, beautiful people that a paying job would have never allowed me to do.

You gotta see the positive!!!

Until next time . . .
PEACE

B