Alzheimer’s . . . from the Daughter / Dad Perspective

In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole.  I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
B

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Daughter of Dad with Alzheimer’s, from HER Perspective

Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease, but also being left with no other option but to help. Luckily it doesn’t happen all at once.

It starts with helping them retrace their steps to finding their keys that they put in the fridge, to watching them struggle for a few minutes to find their car in the parking lot, to wondering if they know where a store is five minutes away from home, and then ultimately them not being able to drive anymore at all and having their license taken away. It’s a slow and steady progression, but it still hurts me all the same.

Being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind. Nothing prepares you for that, and when the time comes you have to just accept it and take it with a grain of salt. Conversations are a little harder to have, dinners aren’t as cheerful as they once were and outings have become progressively more stressful. But at the end of the day despite all the challenges, the unpredictable circumstances, and my patience running a little too thin…I still love my step dad, and I know he still loves me. 

Dad, with Alzheimer’s, of Daughter from HIS perspective

Being a Dad to a daughter is special, like a gift. Throw in Alzheimer’s and it complicates the entire situation. Her helping to care for me while I live with Alzheimer’s was nowhere on my radar, but she just jumped in and never looked back.

At 22 years old, she has her own life and will not be here forever. My questions are, will I be around or aware to see her married, become a mother, to hold my first Grandchild? Will I be there to celebrate those moments with her?

I know she tires of me asking questions she has answered before but she doesn’t bat an eye. She just answers. When she comes home at the end of her work day/night, she sits with me for a few moments, asking me questions about my day that most of the time I can’t answer but somehow, she already knows the answers and helps me fill in the blanks. Funny thing is, I don’t always recognize when she does this . . . but she knows, and it breaks my heart.

I realize I must sound the same as my Mother did (she also had Alzheimer’s) when I asked her questions. I’m sure, as confused as I sound, she still treats me with the same love and kindness as I treated my Mother. I couldn’t ask for anything more loving than that.

She states, “being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind.” I don’t know anyone who would want that for any of their children. I know I didn’t and I also know my daughter doesn’t have to do what she does, day in and day out, but she does it.

My one hope is that she is far, far away when I am in need of the type of care I’ll need in the end. Until then, I try to cherish each kiss on the cheek, each moment, no matter how big, small or insignificant we share.​

#WAM2017  #WorldAlzheimersDay2017

Until next time . . .
PEACE!

B

 

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

Why I Advocate for Alzheimer’s

Why I Advocate for Alzheimer’s

One of the main reasons I Advocate for Alzheimer’s is because of the 4 people in my life (my Grandfather, my wife’s Grandmother, my Mother and Father) who suffered and died from Alzheimer’s and Dementia.
Why did they have to suffer and die?

According to the facts from ww.alz.org

  • It’s the only cause of death in the Top 10 in America that cannot be prevented, cured or slowed
  • 1 in 3 die with Alzheimer’s or another dementia
  • Alzheimer’s disease is the 6th leading cause of death in the United States
  • THIS IS A BIGGIE . . . ONLY 45% OF PEOPLE WITH ALZHEIMER’s DISEASE, OR THEIR CAREGIVERS, REPORT BEING TOLD OF THEIR DIAGNOSIS.  REALLY???  REALLY??????
  • MORE THAN 90% OF PEOPLE WITH THE FOUR MOST COMMON TYPES OF CANCER HAVE BEEN TOLD OF THEIR DIAGNOSIS.
  • In 2015, Alzheimer’s and other Dementia’s will cost the nation $226 BILLION.
  • By 2050, these costs could rise as high as $1.1 TRILLION

Not being told that you have a disease that will kill you is unacceptable. In a CNN cover story, it was reported that, “Doctors are sidestepping this tough conversation. But why? That’s been studied too, and the reasons doctors give range from diagnostic uncertainty and fear of causing emotional distress to time constraints, lack of support, and stigma.”

I think back to when I was sitting in my Neurologist’s office and he was going on and on about this and that and I could tell he was beating around the bush, so me being me, I stopped him and asked, “DO I HAVE ALZHEIMER’S?” He paused and quietly said “YES!” I know it was uncomfortable for him to tell me but that’s why he’s a Doctor. He’s going to have t tell his patients unpleasant things every now and then. If you can’t do that, then take off the white coat, turn in your stethoscope and go do something else.

Another reason why people with Alzheimer’s disease suffer and die is because Alzheimer’s disease is severely underfunded. I wanted to know why so I did some research. I know this is just the tip of the iceberg but here are some of my findings. (each link is clickable if you want to read)

 Seth Rogen Gets Serious To Fight ‘Ridiculously Underfunded’ Alzheimer’s Disease
 There Is No Cure And Little Money To Solve Alzheimer’s Disease
 Alzheimer’s Funding Lags Behind Other Diseases
 Dementia research underfunded, former Health Minister claims
 Alzheimer’s Is Expensive, Deadly and Growing. So Where’s the Research Money?
 Alzheimer’s Deaths Vastly Under-Reported, Study Says

In the last article, which was published in Newsweek, it states, “Alzheimer’s is a fatal disease. Over 5 million people in the U.S. currently live with Alzheimer’s, and most have a life expectancy of 3 to 10 years after diagnosis. With that number in mind, how were only 83,494 deaths attributed to Alzheimer’s in 2010? The numbers just don’t add up.”

Did somebody flunk math? Who’s minding the Disease funding store?

If I sound like I’m pissed, it’s because I am. I cannot believe this country sends billions and billions of dollars to other countries for research, development and care for their diseases while we suffer and die because there’s not enough money to go around for the home team.

Now, I have Alzheimer’s. If this disease would have been acknowledged and funded like other diseases, there might be a glimmer of hope for me. Since that didn’t happen, my future is bleak. At 54 years of age, I never thought I would be facing the end of my life, but the end is not here yet.

Until that time and as long as I am able, I will do everything within my power to raise awareness and to raise funds for the future generations of people with Alzheimer’s. That means for all of you that read this, I’ll be hitting you up for money. But don’t worry, I won’t hassle you . . . too much.  😉

Until next time,

PEACE!

Fog: It’s Not Just a Weather Condition

Fog: It’s Not Just a Weather Condition

I’m frequently asked, “how have you been” or “how are you feeling?” or “how was your day?” My most frequent response is a little foggy.”

In an effort to help everyone understand what I am trying to say, I consulted www.merriam-webster.com and looked up fog. This is what I found:

noun \ˈfg, fäg\

: many small drops of water floating in the air above the ground, the sea, etc.

: a state of mental confusion

The second definition, as you may have guessed, is the one that I refer to.

To give you an example, imagine driving down the road. Fog has set in and visibility is obstructed. You can’t see much, you’re cautious of your surroundings because of the dense fog. All of a sudden, you break through to a clearing. You can see all around you. Your vision is clear and you can proceed as normal.

Fortunately, we all don’t have to drive in the fog every day but imagine having that fog in your head, every day, never knowing when it will roll in.
You get up to get something, the fog rolls in, preventing you from remembering where you are or why you’re there.
You’re in the middle of a conversation, the fog rolls in so thick it turns to night, blocking out every thought, rendering you speechless.
You’re driving to a very familiar place, again the fog rolls in and you have no idea where you are. You have to rely on your GPS to tell you where to go.

This isn’t just sporadic or a one-time event. This is every day, several times a day, a typical day. Sometimes the fog is thicker, sometimes less, but it’s ALWAYS there. It’s my Alzheimer’s journey.

So, if you ask me how I’m doing and my answer is, Foggy with a hope of sunshine,” you’ll know what I mean. I remain positive and hopeful that the sunshine will continue to show up and burn away the fog.

Thanks for reading. Hope your day is everything you want and need it to be.

Peace!