A few months ago, I went to renew my drivers license. The renewal date wasn’t until September but Maureen was renewing hers so I figured I would renew mine while we were there.
As we were sitting there answering questions the clerk was asking, she asked me the following question … “Do you have any type of mental illness that may prevent you from driving a vehicle safely?” I knew I had to answer the question honestly, even though I did not want to for I knew what the consequences would be.
I told the clerk, “well, I have Alzheimer’s Disease and I’m not really sure if my reaction time would be like it was.”
She apologized and told me that she could not renew my drivers license without having me tested to see if I could pass the driving test. I knew if I got behind the wheel of a car, my reaction time was not going to be enough to pass the driving test. She said she would leave it open in case I wanted to get tested but she would have to flag my license.
Maureen and I had several discussions, weighing the pros and cons of getting tested. What ended up being the straw that broke the camels back was this. Maureen told me she had noticed the my Executive Functions (making decisions, diminished by my Vascular Dementia) had gone down hill. She gave me examples of conversations we had, some I remembered but the majority of the conversations I didn’t remember.
With my inability to make snap decisions, we came to the conclusion that renewing my license was not going to happen. I understood that, but it was a sad, sad time.
Yesterday, July 21st, I went back to get an ID. Once the process was over, I was no longer a licensed driver. It hit me hard once we got back into the car. As we were pulling out of the parking lot, I lost it. I had a drivers license since I was 17 or 18 years old. Now turning 60 years old in a little over a month and a half, I no longer have a drivers license.
It was so very hard to take although I knew what I was going in there for. I went in as a licensed driver and came out with a Florida ID. It still hit me very very hard. I felt like my Dementia once again took something away from me that I treasured, something that was mine.
I remembered a story my brother Wayne told us. He took my Dad’s car keys away for he was no longer able to drive safely. My Dad forgot a lot of things due to his Vascular Dementia but one day he and Wayne were having a conversation and my Dad was just staring at Wayne. He then said, “I know you! You’re the SOB that took my car keys!” or something along those lines.
It’s funny (not Ha Ha funny) how memories will come back to me at the strangest times. It’s usually not the big memories, but the smaller, memories.
I hate what Alzheimer’s has already taken from me. I have always said from the beginning that I was not going to allow Alzheimer’s to define who I am. I think I’ve done a pretty good job of that so far. Today was a big test. Over the past 6 years, I don’t know if it was Alzheimer’s or Vascular Dementia that took away some things that I treasured and things I had taken for granted for so many years.
Now, those things (friendships, memories, dreams) are gone. I haven’t driven a car or any other type of vehicle since I’ve been here in Largo. I knew that I should not be behind the wheel of a car but I still had my that little piece of plastic that said I still had the ability or I should say, the right, to drive a vehicle.
That is no more and I need to let it go.
Maureen said “the ability to drive is not the measure of a man. The true measure of a man is his care and concern about his fellow man. And you have shown yourself to be a giant by considering the safety of others in this decision. THANK You!”
She then said, “you know what is such a comfort to me? having you in the car with me. You’re my second set of eyes, my second set of ears. You keep me safe!”
So I guess now, I am a co-pilot!
Until Next Time . . .
Shortly after I was diagnosed with Alzheimer’s Disease in 2014, I came up with my tag line, “I Have Alzheimer’s BUT . . . It DOESN’T Have ME!!!”
What that meant to me was I didn’t want to be identified by my Alzheimer’s, rather, I still wanted to be identified as Brian. Well, things didn’t quite work out that way. Instead of continuing to identify me as Brian, it felt like more and more people started saying their good-bye’s. Phone calls, text messages, e-mails just went unanswered. It was a very lonely time and some days, it still is.
I use Social Media as a way to keep up with the latest trends, news, discoveries and anything positive I can find regarding Dementia-Related Illnesses. I also use Social Media to remain . . . SOCIAL. Most days I receive the “Memories” post that reminds me of past postings, photos and, of course, memories. While I enjoy looking at some of the photos, there are other photos that make me sad. These are usually photos of people I thought would be my friends forever but have now disappeared.
Don’t get me wrong, I am not complaining, whining, or looking for sympathy. I am simply trying to figure out why some of these folks just don’t engage with me anymore. These aren’t people who were just acquaintances, these were people I thought were my true friends and still would be throughout the rest of my life. This has proved not to be.
I am very thankful for those folks who still stay in touch with me. It brings me joy, smiles, warmth and all sorts of “feel good” feelings. I am so very thankful these folks have kept me as their friend and not toss me away like an old, used up newspaper.
This brings me to the title of this Blog Post, “Are There Do’s and Don’ts When it Comes to Dementia?” I know there aren’t really any rules but when I did some research, I came a cross the information below which is the closest thing I have found regarding the Do’s and Don’ts of Dementia
16 THINGS I WOULD WANT, IF I GOT DEMENTIA
by Rachel Wonderlin
- If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
- If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
- If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends.
- If I get dementia, ask me to tell you a story from my past.
- If I get dementia, and I become agitated, take the time to figure out what is bothering me.
- If I get dementia, treat me the way that you would want to be treated.
- If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need.
- If I get dementia, don’t talk about me as if I’m not in the room.
- If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live.
- If I get dementia, and I live in a dementia care community, please visit me often.
- If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault.
- If I get dementia, make sure I always have my favorite music playing within earshot.
- If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
- If I get dementia, don’t exclude me from parties and family gatherings.
- If I get dementia, know that I still like receiving hugs or handshakes.
- If I get dementia, remember that I am still the person you know and love.
These 16 things make so much sense to me. It’s basically saying, “treat me as Brian”. I know there are some things listed above that “may seem” wrong, however, don’t look at it as wrong. People who are Living with a Dementia-Related Illness may sometimes have their own reality. I go through periods of time when my own reality may be skewed. If someone tries to correct me and guide me towards the reality they have, especially when I’m in my brain fog, let’s just say it usually does not end up pretty for I become argumentative, unreasonable, foul-mouthed and even more confused as I was to begin with. I know this because I ask Maureen to tell me, when I come out of my fog, if I did anything mean or say anything foul. I try to learn from it, but sometimes it just doesn’t stick.
I know I rambled and may have gotten off topic but, this is what happens sometimes with those of us living with Dementia.
Some of my friends may have seen me acting in a peculiar way when I was in my fog. That could be a reason they stopped keeping in contact with me.
Some other friends may have had a family member who recently passed away with a Dementia-Related Illness. It may be too hard for them to see me going down that path.
Some other friends just may find it too hard to see me like I am. I didn’t like seeing my Grandfather or my Mother while they were on their Alzheimer’s Journey so, I understand.
Whatever your reason is for not staying in contact with me or someone else who is Living with a Dementia-Related Illness, those reasons are yours and yours alone. Just know, it’s OK. We may wonder why but the thing about Alzheimer’s and Other Dementia-Related Illnesses, we may just forget . . . until we see those Memories pop up on our Social Media feed.
Until Next Time . . .
When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. (yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???
I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . .
For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .
“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”
“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”
“Not telling the truth” (I’m still not sure how I always got caught)
“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”
You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.
As the years went by, I still questioned WHY anytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.
So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.
Then, in 1998, my world changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”
She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought during all 22 years of her life.
Mary passed away in October of 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which is in September. It was a huge surprise.
I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.
I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series. Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.
During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.
We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.
The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson.
The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this.
My question, again, was, “WHY HER?”
Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang.
She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.
She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.
Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.
She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?
Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.
So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question.
I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”
Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.
So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?”
Thank you, Mary and Mom . . . still teaching me after all these years.
I LOVE and MISS YOU BOTH!
Until Next Time . . .
After writing the first post earlier in the week, I received so many comments here, on Facebook, Messenger, Twitter, texts and e-mail that were all very positive. I appreciated everything each of you had to say. What I came to realize in conversations with some folks was, I wasn’t alone of being accused of FAKING a Dementia-Related Illness. It broke my heart that so many other people have gone through the same scenario I did. Then, I received a phone call from a good friend of mine (who also doesn’t look like or act like he has Alzheimer’s). We talked for a long time and we discussed so many things related to my recent blog post. I knew then that I was going to have to do a Part II based upon the information we discussed. So, without further ado . . .
PART II (hey, that rhymed with ado! It’s amazing what a person with Alzheimer’s can do!)
I will start with a quote from the “Invisible Disabilities Association“
“In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.
In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.”
When I wrote Part I, I had no knowledge of the Invisible Disabilities Association which is why I listed their information above. You should really go take a look!
I also failed to mention in Part 1 that I have Type II Diabetes and Heart Disease (3 heart attacks, 2 stents). I mention these 2 diseases since they are Dementia-Related Illnesses. Along with the genetics from my Great-Grandmother, Maternal Grandfather and Mother, (all who died with Alzheimer’s) you throw my Father into the mix (who died with Vascular Dementia) and he, along with my Mother, passed along the ApoE4 protein to me, the chances of me NOT developing Alzheimer’s were pretty slim.
Even with all that, I’m faking.
I’ve also had about a dozen surgeries in my life yet none of these issues EVER came into question from anyone. No one ever said to me, “You don’t look like you have Diabetes” or “You don’t look like you’ve had 3 heart attacks” or You don’t lok like you’ve had that many surgeries.”
SO, WHY THE ACCUSATIONS OF FAKING ALZHEIMER’S DISEASE???
I shake my head in disbelief for I wouldn’t even know HOW to fake Alzheimer’s.
To put it plainly, living with this disease is no picnic. It really sucks.
The hardest part of Living with Alzheimer’s, at least for me, is knowing you have a fatal disease that one day will contribute to your death. However, you can’t think about it all the time for it’s really a depressing subject. So, you suck it up because the last thing you want to do is to affect your family in any type of negative way. But remember, we have Alzheimer’s and we forget and, unbeknownst to us, we do bring it up, and that sucks even worse.
I think I’ve said this before but it’s worth saying again . . .
“I don’t try to paint a rosy picture of Living with Alzheimer’s because there’s nothing rosy about it.”
It would be an insult to myself as well as to anyone who is currently living with the Disease or who’s life has already ended because of the Disease if I tried to make it sound any other way than what it actually is.
“But you LOOK good”
“You just want attention”
“But you don’t LOOK sick”
How many times have we heard this? I know this statement has been uttered to individuals with all types of diseases that can’t be seen. You see, when someone breaks their arm or leg, they get a cast. If someone cuts themselves, they get a bandage. If someone has surgeries, they have scars.
Alzheimer’s is invisible. It can’t really be seen, however, it can be seen through our unsteady actions, through the way we sometimes stutter while trying to find our words, or, during conversations when we start repeating ourselves.
Then, if they’re paying attention, they know something isn’t right.
When I first started advocating, I actually talked about Alzheimer’s being invisible. I told my audience, “it would be easier if we all dressed in purple and had a cool-looking cape with a big A on it. Besides looking “hero-ish” people would then know we have Alzheimer’s.” (Based on that is where I came up with my Twitter name “The ALZ Guy”. I pictured myself standing on a stage wearing my purple, Super Hero-ish costume, and starting my presentation with my hands on my hips, saying in my best Batman voice, “I’M ALZHEIMER’S GUY!”
OK, now that you know I have a very vivid imagination, I’ll move on.
I guess what I’m trying to say is, you can’t control what other people think or what other people say. When it comes to Alzheimer’s or other Dementia-Related Illnesses, there is so much that is unknown, people don’t know how to react.
Sometimes they will say negative things for they think are correct or factual.
Sometimes they will say negative things because they can’t/won’t accept the truth that you have a fatal disease.
And sadly, sometimes they will say negative things just out of meanness or jealousy, you know, just because they think you’re faking it just to get attention.
The only thing you are able to control in this situation is you. People can say what they want but it’s up to you whether or not you let the words harm you. Don’t get me wrong, the words sting, but, probably the one good thing about those of us living with Dementia,
WE’LL FORGET WHAT THEY SAID . . . unless of course, we’re faking!
Until Next Time,
Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?
First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???
- I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
- I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape? Did I fake remembering the 4 words I was told 5 minutes ago?
- Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
- I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?
WOW . . . if I was faking all this, I must be a pretty damn good faker to have come up with this diabolical plan. But wait, if I was actually faking it, wouldn’t that take someone who can think and remember what to do, day in and day out, so they could remember to keep “faking it?”
- who has no clue what day it is
- who cannot tell time on a non-digital watch
- who has to have alerts on his phone to remind him to take his medicine, to eat and to bathe every day
- who can’t remember, day to day, how to work a TV remote
Could someone who is Cognitively Impaired really carry out this plan?
Oh wait, I get it . . . I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember my wife and children. God forbid, should I be able to use a laptop to write blog posts that will hopefully bring awareness and education to people who don’t understand the in’s and out’s of Living with Alzheimer’s Disease that they only saw in their elderly parents and grandparents.
GEEEEZZZZ, I guess since I’m able to do all of these things, maybe all of those so called medical professionals, all 4 of them, plus their PA’s and NP’s, all with their Diplomas and Certificates and published articles are just full of shit!
Maybe they have a quota as to how many people they have to diagnose with a Dementia-Related Illness each month and they needed just one more to be awarded the monthly “Hey, You Diagnosed Some Poor Sucker with a Fatal Illness Who Wasn’t Really Sick” award, and I was the lucky one.
Maybe they (all 4 Dr’s, PA’s and NP’s) deliberately lied to me just to turn my life and my family’s life inside out and upside down, all the while so they can collect a $35 co-pay so they have some spending money for lunch!
Wow, did they pull the wool over my eyes, or what?
I’ve been open and honest about my Alzheimer’s life since the day I was diagnosed. When I talk about it, I don’t do it to make people feel sorry for me, to have pity on me or to call attention to myself.
If I did that, I’d be dishonoring the lives of my Grandfather, my Mother and Father, or my wife’s Grandmother.
If I did that, I’d be making a mockery of every person in the world who has Alzheimer’s Disease, whether they be over or under the age of 65, individuals who I now call a friend.
If I did that, I’d be purposely putting my wife and children through sheer, underserving, inexcusable, wretched hell.
Well, I don’t have the capability to do something like that.
I’m not saying I’m perfect for I have many faults and I’ve made many mistakes in my life that I’ve paid dearly for, but I’m not evil!
So, for those of you who want to continue thinking I’m faking my illness, please go right ahead. You have the right to think and say what you want. You can’t hurt me anymore than what I’ve already been. We don’t talk or see each other so it’s not like I’m missing out on anything.
Since receiving my “diagnosis” I’ve become non-existent to you, well, except to be called a fake, not to my face of course.
So please, continue your path in life and feel good about yourself. It must be nice to sit upon your throne and pass judgment upon those of us, you feel, are just skating through life.
Yeah, I’m skating alright. Of course, I can no longer skate on my own (guess I’m faking that too) but I’ve got Shannon (and her family), Asheton, Bradley, Linda and so many others holding me up both physically and emotionally when I need it. Unfortunately, I’ve been needing their assistance more and more lately but they are always there. I know I’m fortunate to have them, and yes, I know who YOU are, and I NEVER take it for granted.
They understand what I go through every day. They see and talk to me on good days, bad days and all days in between, because they get it and I am so thankful for that.
Feel free to call them and ask them if I’m “faking it”.
Better yet, just call Shannon. She would just loooooove to talk to some of you.
Just be prepared though, she’s kinda protective of me.
Until Next Time . . .
This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.
At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.
So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!
The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with a praline and pecan King Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)
Anyway, back to the no-speaking thing.
Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.
On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements. Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but . . .
I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.
I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.
I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.
Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking. So I stayed in bed.
Before I go, I just want to drive home one more thing.
Yes . . . I have Alzheimer’s!
Yes . . . I can no longer speak!
Yes . . . It’s a pain in the ass to deal with!
However . . . I’m Still Here, Living the Best Life I Can!
There are many others in the world who are just like me.
DON’T COUNT US OUT!
We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able.
We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related.
Even when we are no longer of this earth, our words will still live on.
“I Have Alzheimer’s BUT, It Doesn’t Have Me
for I Don’t Allow it to Define Who I AM!!!”
Until Next Time,
I know you’re probably looking at the title of this blog post wondering what it means. I promise I’ll tell you, but first, I would like to (I’m trying to think of the word that means to look back on certain events but not only can I not figure out the word, I can hardly remember yesterday, so I will just say . . . ) look back on 2016.
2016 was a very busy year for me. I can’t remember a time in my professional work life when I was this busy. All I can say is, it was a different kind of busy. Being that I’m not able to hold down a 8 – 5 salaried job doesn’t mean I’m sitting back in my recliner with Dallas (my dog) eating ice cream and watching daytime talk shows. (by the way, have y’all seen Harry, the new show with Harry Connick, Jr.? It’s on Mon -Fri @2pm CST, on ABC. Just sayin’.)
Where was I . . . Oh yeah, 2016.
Working with several organizations (ALZ Assoc AL/FL Panhandle, National ALZ Assoc Early-Stage Advisory Group, Dementia Action Alliance, Covenant Alzheimer’s Care, Dementia Alliance International) keeps me busy. And no, I’m not complaining.
Busy = Engaged Brain . . . Stagnant = Fog. I’ll take an engaged brain any day.
This brings me to the first number in the title . . . 58
58 is the number of presentations I took part in during 2016. Yes, with only 52 weeks in the year, there were times when I doubled up in a week and even in a day. I didn’t care. I did what I was asked to do without question. In my mind, it was another opportunity to spread Dementia Awareness. It was another opportunity to demystify the Stigma associated with Dementia, especially Early-Onset Dementia.
No matter where I go, people still associate Dementia as that of a disease of the elderly. When I stand at the podium and tell the audience, “I’m 56 years old and I have Early-Onset Alzheimer’s Disease”, the reaction, the looks on people’s faces is consistent. It’s that of surprise, shock, and yes, disbelief. I get comments like, “My Mother / Father / Grandmother / Grandfather had Dementia and they couldn’t speak, let alone stand up in front of an audience like you do and talk about their life wth Alzheimer’s. I ask the age of their loved one and they are/were considerably older than me. I take that as an opportunity to talk about my life and the lives of hundreds of thousands of others who have Early-Stage Dementia and are able to live somewhat of a full life.
I also have people tell me how “brave” I am to talk about my life with Alzheimer’s Disease. Military personnel, Law Enforcement Officer’s, Fire Fighters and others who put their lives on the line every day are who I consider brave. I’m just a guy with Alzheimer’s Disease who can still talk about what it’s like to live with the disease. As I say in my presentation, “Alzheimer’s: Up Close and Personal”, “I don’t try to paint a rosy picture of what it’s like to live with this disease for if I did, you would not understand what we go through on a daily basis.” Although I don’t consider myself “brave”, I do thank them for the compliment. My Momma taught me to be kind.
My Dementia Advocacy isn’t just restricted to the AL/FL Panhandle. I also go to different places in the U.S. That’s what brings me to the second number in the title, 11,370.
That number represents the number of miles I have traveled by air and highway during 2016. To give you a breakdown, 5,836 were the number of air miles, leaving a balance of 5,534 representing the number of highway miles. The air miles weren’t shocking since I made a number of trips to Washington, DC and Chicago, but the highway miles are what really surprised me.
One of the most memorable moments was during a presentation in Washington DC at the National Academies of Sciences • Engineering • Medicine for the “Preventing Dementia and Cognitive Impairment Workshop”.
I was asked to speak at the workshop, to give an abbreviated presentation of my “Alzheimers: Up Close and Personal” presentation. Looking at the other presenters, they were Ph.D’s. CEO’s, MD’s and then there was me. The only abbreviations I could think of to go behind my name was ALZ, which is how I introduced myself.
Being that my presentation was scheduled for later in the afternoon, I was able to listen to the other presenters. It was a bit intimidating due to their Scientific, Medical, and Professional backgrounds but I knew I would be presenting from a first person point of view, talking about myself rather than someone or some thing.
When it came time to speak, I walked up to the podium. To the left of me was a wall of windows. Right before I started to speak, I looked out the window and there was the Lincoln Memorial. It was such a surreal moment. A feeling of calmness came over me as I started my presentation. During my 15-minute allotted time frame, I glanced at Mr. Lincoln’s Memorial several times. I not only felt proud to be there, but I felt as if I were representing the millions of people living in the United States who were living with Dementia. At the conclusion of my presentation, the unthinkable happened. The entire room stood up and gave me a standing ovation. No one else, the entire day, received that type of acknowledgment. What a memorable moment that was, memorable enough to stay with me.
My local advocacy has put me in front of audiences numbering in the 20’s and 30’s to 100’s. Each time, I share my “first person point-of-view” as to what it’s like Living with Alzheimer’s each and every day.
Although I’ve spoken to Medical Professionals, Civic Organizations and Caregivers, the one group that affects me in the most emotional way are the Law Enforcement Officers. Each and every day, these men and women put on their uniforms and then put their lives on the line. That’s what I call bravery!
Through Crisis Intervention Team Training, I speak to them as well as teach them as to how to identify people Living with a Dementia-Related Illness, individuals they may come into contact with each and every day. Again, I speak from personal experiences of public confusion, disorientation, broken or unintelligible speech, etc. to give them an idea of what to look for. They ask very good questions and don’t mind if the presentation goes over the allotted time.
Most of them, as do most of the audiences I speak to, have a connection to a family member or friend who has had or has a Dementia-Related Illness.
Most of them have already had experiences with individuals with a Dementia-Related Illness and will now interact with these individuals differently and in a more positive way.
And this brings me to the last number in the title, 1,000%, which is what I give to everything Alzheimer’s.
– preparing/updating one of my presentations
– presenting to a small, medium or large audience
– making sure my family knows how much I appreciate what they do for me, day in and day out
I make sure I give it my all.
I give 1,000% for I don’t know when I won’t be able to do this any longer.
When my time comes, I want to know that:
– I gave everything I had to give.
– no matter how big or small, I made a difference
– I gave people a better understanding of what it’s like to “Live with Alzheimer’s”
– I played a part in the destigmatization of Dementia
– people are now aware that Dementia is NOT just a disease of the elderly
– I helped people realize and understand that just because someone has Dementia does not mean that it’s the end of all things.
There is still so much work to be done. There is still so much Dementia awareness and education to be shared. I’m hoping 2017 will be a breakthrough.
Whether or not that happens, I will continue my travels and will continue giving 1,000%!
In honor of National Alzheimer’s Awareness and Family Caregivers Month, I wanted to take a moment to Honor Shannon, Asheton and Bradley, for doing what they do, day in and day out, to support me as we all travel along on this Alzheimer’s Journey.
I often think back to our wedding day. It’s still far back enough in my long-term memory that I can recall a lot of the details. I also have photos I can refer to when my memory gets clouded.
The one thing that stood out in my mind on that day, and still stands out today, was when I first saw you. I’ll layout the scene:
It was sunset, a cool afternoon on Pensacola Beach. Your family, some of my family and a few close friend had all gathered at the edge of the sand awaiting your arrival. The minister gave me instructions to not look back until he gave me the go ahead.
He told me when you started walking down the steps towards me. I could hear comments of, “Oh, how beautiful!” and “Oh my God, she looks so radiant.” I’m sure there were others but I don’t remember those. Then he told me to turn around.
(I know have told you this many times before but I want everyone who is reading this to know the effect you had on me.)
I’ve never before had my breath taken away nor has it happened since. It was a one-time event . . . so far. When I turned and caught sight of you, I literally couldn’t breathe. I could only stand and stare at this beautiful woman, dressed in white, walking towards me to become my wife. I had never seen anything or anyone so beautiful.
I’m not sure of the words that were said for I heard nothing but waves and birds. I’m sure the Minister was saying some nice things, but I was still not really breathing. I do remember thinking to myself, “What in the hell did I do to deserve the love of this beautiful woman?” (Just so you know, I still think that today.)
We both wrote our own vows and although I don’t remember exactly what we said, I know the words were beautiful and from the heart. (I also know those words and the original pieces of paper they were written on are in the hope chest along with our other wedding items for safe keeping.)
I do know that somewhere, mixed in with our own words, were some of the more traditional “wedding vow” words, particularly, for good times and bad, in sickness and in health. When we finally got around to saying our “I Do’s”, I wasn’t just marrying you. Your children were also accepting me into the family.
Back then, we had no idea how true those traditional wedding vows would ring true.
Over the course of our marriage, as a family, we have dealt with major and minor surgeries, cuts and bruises, illnesses and just plain everyday stuff. We got through it all with the support of each other.
The reason I bring this up is because each time something happened, we healed, we were able to return to whatever was interrupted.
Now, it’s different. You and I both know that I will never be healed and I won’t be able to return to whatever has been interrupted because there is no returning to what was. I try to not think of that and think more of the positive, to remind myself to “Live in the Moment”, to enjoy those moments and attempt to hold on to as much as I can.
You don’t seem to let too much stop you, or at least you hide it very well. Instead, you have stepped up your game. You have readjusted your life. Asheton and Bradley have readjusted their life, but none of you complain. You allow me to do what I “think” I’m able to do and you allow me to fall, both figuratively and realistically, and the three of you are always there to pick me back up and get me back on my feet.
You’re always there, but never in the spotlight. Unlike me, you’re a behind the scenes type of person, staying in the shadows. Asheton and Bradley are like you in that aspect, allowing me to do what I do but still getting 100% of all of your support. They had a very good role model.
The three of you have allowed yourselves to appear on TV, radio, newspapers, magazine articles and so forth, all on my behalf but also stepping outside of your comfort zone for me. I can never thank you enough for everything all of you do but I try to show my appreciation each and every day.
I know our future is both known and unknown. Most people say the unknown is what scares them. I think it’s because they don’t know “the known.” We do! It makes the unknown a lot easier to navigate. I’m fortunate to have 3 travel companions coming along with me on this journey and I couldn’t ask for anyone better.
I know I thank you for something several times a day and you graciously accept it telling me, “Oh it’s fine. You would do the same for me.” I see Asheton and Bradley wearing their purple Alzheimer’s shirts to school, while shopping, going to movies, etc, and you wear purple more than I do! As I said before, I couldn’t ask for anyone better.
I don’t think I deserve what the three of you do for me, especially for what I put you through on my bad days. I wish I could control that part but unfortunately, I can’t. No amount of reminders on my phone or Post-Its seem to stop the fog from rolling in.
Along with being National Alzheimer’s Awareness Month, it is also Family Caregiver’s Month. I know you like the term Care Partner better than Caregiver but I didn’t create the term. If I did, you know I would have come up with the correct description. To me, we are explorers, traveling on a Journey, making new discoveries each and every day, never knowing what is waiting for us around each bend.
Thank you for taking my hand, letting me lead when I can, you taking the lead when I can’t and just being by my side every step of the way. I love you more than you can ever dream possible.
October 28th, 2014 was on a Friday. I know this because I just looked it up on the calendar. It would be a day that changed my life, my family’s life, forever.
Shannon and I were sitting in my Neurologists’ office, awaiting the results from my MRI and Cognitive Testing. Once he was seated, he started explaining things, the way Dr’s do, but I remember stopping him and asking the question . . . “DO I HAVE ALZHEIMER’S DISEASE?”
He paused for a moment, and then answered, “YES.”
I don’t remember much after that. I know he explained the results of the MRI and my Cognitive Testing (which I found out later that I failed miserably) and he explained the results of the genetics and protein studies. The only thing I DO remember was Shannon, holding my hand while I cried uncontrollably, and telling me, “It’s going to be OK. We’ll get through this together” or something along those lines.
I thought of my Mother, who, at the time, was still alive but in the last stages of her Alzheimer’s battle. (she would pass away 3 months later)
I thought of my Father who passed away in 2010 with Vascular Dementia.
I thought of my Grandfather who passed away in 1985 with Alzheimer’s.
I thought of Shannon’s Grandmother who had passed away only 2 months earlier with Alzheimer’s.
I’ll tell you, being around Alzheimer’s and Dementia Related Illnesses is difficult in and of itself, but it does not compare to Living with the Disease. I equate it to the obnoxious relative that comes for a visit . . . and winds up staying . . . only to get more annoying as times goes on . . . and NEVER LEAVES!
I’ll tell you something else. The brain is strange and wonderful. Although Alzheimer’s has erased a lot of my short-term memory from my brain, it still allows me to remember certain things. I’ll explain.
Let’s go back to October 28, 2014. On the way home, Shannon and I were silent. I guess that was to be expected after the news we just received. I guess I was trying to wrap my head around what I was going to do from this point forward when I had my “Eureka Moment!”
I turned to Shannon and said, “I know what I have to do.”
She asked what I was thinking.
I said, “I have to talk about it.”
She replied with something that has stuck with me for the past 2 years . . .
“Once you put it out there, you can’t take it back!”
I have heard those words so many times in my head as well as during the many times I repeat them as part of my “Alzheimer’s: Up close and Personal” presentation. I can tell you those words have come back to haunt me for when I broke the news about having Alzheimer’s Disease, it did 2 things:
1) Being that I am not in my 70’s or 80’s and I can still do “some of the things” I have always done, some people doubt that I actually have Alzheimer’s Disease and have taken the time to tell me so.
2) I have lost a lot of friends and/or acquaintances because they don’t feel I am still the person I once was. Therefore I’m not able to converse, tell/understand jokes, etc . . .
I chalk it up to lack of Alzheimer’s knowledge and awareness in our society. That’s why when I told Shannon I wanted to talk about it, neither one of us expected I would be speaking to all types of audiences in numerous locations explaining what it’s like to live with Alzheimer’s Disease.
This is not exactly the life I wanted to live, nor is it how I wanted to spend my retirement, however, we sometimes have to accept the cards we are dealt and make the most of it. It also makes it a bit easier to have 3 people, whom I love most in the world, right by my side. Shannon, Asheton and Bradley are right with me on my Alzheimer’s Journey. They help when I need them, they help when I don’t “THINK” I need them and they are there to laugh with me, to cry with me, to joke with me and to make me feel as normal as can be. They are the true example of family.
(I almost forgot to mention, Dallas, my furry friend, who has the intuition as to when I am having good and bad days and attempts to take care of me.)
So, I can look at October 28, 2014 as the day that I received the diagnosis of having a devasting, fatal disease and have a continuous, daily pity party
I can look at October 28th, 2014 as the day that put me on a positive path to help others understand this devastating, fatal disease and at the same time, keeping me “In The Moment.”
I think you know which choice I chose!
Thanks for reading!
Until next time,