The Journey is Not Always as it Seems!

Being today is the last Friday in June, also the last Friday of Alzheimer’s and Brain Awareness Month, I knew I wanted to write about something but I didn’t know what that “something” was going to be. A trip to the grocery store today gave me my inspiration.

For those of you who may not know, I now live alone in an apartment. Although I still have a drivers license, I don’t have a vehicle for I can’t afford one (insurance, gas, maintenance, etc) so I found an apartment complex that is within walking distance to everything I need.

When I got up this morning, my intention was to head to Winn Dixie for I needed a few things, however, my brain had other plans and the fog rolled in. (For those of you who don’t know what I’m talking about, you may want to see one of my earlier blog posts Fog, It’s Not Just a Weather Condition.) 

When in a “Foggy State” not only is my brain not operating at full capacity but my balance is a bit off. The last thing I wanted to happen is to fall either while walking to or from the grocery, so, I remained inside.

I busied myself with other things, completely forgetting I needed to go to the grocery. Opening the refrigerator to fix lunch, I suddenly realized, I was supposed to go to the grocery. Forgetting things like this used to make me angry but now, they make me laugh at myself. It took me several years to realize it was no one’s fault other than my own when I forget things. Then after a couple of additional years, it wasn’t my fault, it was Alzheimer’s’ fault! (I’ve always been a slow learner).

I started getting ready, making sure I had my wallet, my phone, and my backpack and off I went. The walk is only about a 1/2 mile each way so I get my exercise in while getting my errands done. Another thing I’ve learned it’s easier to use a backpack to carry my groceries than it is to carry the plastic bags that can easily burst or rip. (I learned that the hard way.)

With my shopping done, I packed my backpack but couldn’t fit everything so I had to carry 2 grocery bags. I made my way across the parking lot and was about to make my way to the sidewalk when I car came up behind me.

From what I could see, there were 3 teenagers in the car. There may have been 1 other but I don’t really know or care. The driver and the kid seated directly behind him started shouting obscenities at me. I didn’t understand what I had done. It wasn’t like I crossed in front of them for they had come up behind me. I just couldn’t understand what was happening.

Then I heard the words, “you homeless f***er!” “Get a job you piece of s**t!” “Go beg somewhere else you blah, blah, blah!” They just kept on screaming, cursing, yelling and laughing at me. I then realized I was approaching an area where there are people usually using that spot, holding signs asking for food and or money. Many of them have backpacks and an assortment of bags with them. I guess they thought I was making my way to that spot to ask for food and/or money.

I didn’t know how to feel. I was being verbally assaulted because I was mistaken for someone who, they thought, was below them, someone who didn’t fit their description of an upstanding member of society, someone who, in their words, “you f***ing BUM!”

I started walking again and they continued cursing and yelling but the traffic started to drown them out. They made their way out of the parking lot and made a point to slow down as they passed me on the street to continue shouting at me. I just ignored them and made my way home.

Once I got home, I unpacked my bags and backpack and then I got angry. I wasn’t angry at those little punks who probably thought they got to me and made me feel bad. I was angry at something else. I was angry at my Alzheimer’s.

If I didn’t have Alzheimer’s Disease, I’d still be working, making A LOT more money than my monthly Social Security Disability.
I’d still be driving, able to get where I needed/wanted to go, rain or shine.
I’d probably still have my network of friends to interact with.

Thinking of these things, I was getting angrier and angrier . . . really pissed off!
Then a notification went off on my phone. It was from someone on Facebook. I didn’t know this person but they were thanking me for opening up about my Alzheimer’s Life. They had read a few of my blog posts as well as my Facebook posts and they thanked me for helping them better understand their Mother, who is currently living with Alzheimer’s.

As fast as the anger came upon me, calmness replaced it. The words, my own words, the words I now say at the end of my presentation came flowing into my brain with such clarity . . . (I still had to get a copy of my presentation to make sure I had the exact verbiage)

“Regardless of whether you have an illness, regardless of your gender, regardless of your race, the way you are perceived by others, although it may be hard to take at times, it’s not something you need to concern yourself with. Look at it as a learning experience you can use later in life and a teaching experience you can use today.

For those who use words or actions against you, it’s because they don’t understand. You know who you are. You know your abilities.

Everything you’ve been through in your life . . . every success, every failure, prepares you for what lies ahead.

It’s why I’m not embarrassed to stand before you or anyone for that matter and say, “I HAVE ALZHEIMER’S DISEASE!” I don’t do it as a way of looking for pity and sympathy, I do it as a way of saying, “HEY! Look at me. I’m only 57 years old, I look somewhat normal but I have this disease.”

It starts a conversation. It’s my way of advocating, spreading the word, making aware, or whatever you want to call it.  It is now my life mission!”

Everything in life happens for a reason. We may not understand the why’s but accepting things makes it more manageable.

Until next time,
PEACE!
B

Alzheimer’s, Travel, and ALL that goes along with it . . . Follow-Up

I know this is a long post, however, I wanted to be sure to include everything to give everyone a clear perspective.

This is a follow-up to my earlier blog post I wrote regarding my airline mishap. I did send an e-mail to the CEO and other Officers of the airline to call attention as to how I was treated. I didn’t do this for my own benefit. I did this so it would not happen to anyone after me.
I made the decision that if they responded satisfactorily, I would not mention the name of the airline. I did receive 2 phone calls and an email in response to my letter. I will say, the phone call nor the e-mail came from the CEO or from any of the officers I wrote. It came from someone in Customer Relations.

I will now post the response I received but I am reserving my opinion as well as not revealing the name of the airline. I  would like to know what you, the reader feels.
Was this an appropriate response?
Did they do enough?
I would love to hear your responses as if this happened to you. Would you feel it was handled satisfactorily?

Below you will find my original blog post, my letter to the CEO and officers of the airline, followed by the response from the airline.

I look forward to YOUR responses. Also, please feel free to share with others.

Thanks,
B

(ORIGINAL BLOG POST, written March 22, 2018)
I love traveling. I love traveling so much that 99% of the time, I travel by myself and most of the time, it’s without incident. This time around, it was incident overload.

I grew up, and have always lived in the South. The temperatures are warm and if it dips below 50 degrees, out comes the heavy coats, scarves, and gloves. I know, people who live in colder climates look at us shivering in what we describe as “cold weather” and shake their heads but, at least we have beaches that we can basically visit year round so it does have its perks.

I have seen snow a few times in my life. It’s a beautiful event where the landscape turns that pure, pristine white and makes everything look so crisp and clean. You watch the news and see folks shoveling their driveways, having accidents due to ice on the roadways and being delayed at airports due to the inability to safely fly.

I had never experienced the kind of snow I have only seen on the news until this week in Washington, DC. The snow was still beautiful and wonderous to see, however, the aftermath of the snow is what affected me.

Most of the time, when I have speaking engagements like I did this past week at the Leading Age PEAK Leadership Summit and Great Minds Gala, I am engaged, empowered and enabled which keeps me in the moment, centered and focused. There is a schedule that I follow. I know where and when things will happen and if there is a hiccup, there are wonderful folks around to assist.

When hiccups occur outside of the structured environment, let’s just say things don’t run as smoothly. Anxiousness sets in, which, in the Dementia World, is quite a bit different than it is if you don’t have Dementia. The situation is amplified. You are aware of what is happening and you are also aware that it’s beyond anyone’s control, but it still brings on anxiousness.

What is NOT acceptable is the treatment received from certain people.

When I am experiencing my moments of anxiousness, my speech becomes broken, jumbled and stuttered. I can’t explain why it just is what it is. When I was speaking to airline employees over the phone, stumbling and bumbling and then finally able to compose myself, I explained that I have Alzheimer’s Disease. They continued to be very patent, kind and professional. Although they weren’t able to get me on another flight, they did what they could to explain everything to me, answer all my questions and assure me I would get on another flight the next day. Simply, they provided me with great customer service.

When I encountered the airline employees in the airport and began stumbling and bumbling, I wasn’t given the opportunity to explain what was happening to me. Instead, in one case, I was immediately asked, “Are you, drunk sir?” Then was told, “If you’re drunk, you won’t be allowed to fly.” I was shocked and thrown off guard by her remark.

In another attempt to get assistance, I was told, “sir if you aren’t able to communicate, you will have to find someone to speak for you,” and then they called for the next customer.

In both cases, I was finally able to communicate that I had Alzheimer’s Disease and was experiencing extreme anxiousness and that I was NOT DRUNK! In one case, I was laughed at for they thought I was joking about my Alzheimer’s.

In the other case, I felt dismissed. After several minutes of trying to explain, I’m still not sure they completely believed me. I sincerely don’t feel I was given the full attention other customers received. As I said above, I felt completely dismissed.

What this shows is there is a HUGE need for more Awareness and Education when it comes to Dementia. Being treated in this manner is completely unacceptable and should NEVER happen. I intend to write this airline (which I will not mention here) and convey my feelings as to how I was treated, dismissed and laughed at, all because I was not acting in a way they deemed to be normal. 

I will also include that while others who had to travel a lot further than I did, utilizing other airlines, they are already home while I’m still sitting in a hotel room as I write this blog post. I’m keeping my fingers crossed I get home this evening.

Until Next Time,

PEACE
B

 

(my letter to the Airline CEO and Officers)

A Very Unfortunate, Unprofessional and Demeaning Experience

Mr. XXX,

I am writing to you in regards to my experience with your airline.

First I want to tell you, I travel frequently as a Dementia Advocate and I am Living with Alzheimer’s Disease.
I recently traveled to Washington, DC for a speaking engagement and chose your airline for its non-stop service and cost-effective airfares. (living with Alzheimer’s, anytime I can choose a non-stop flight, I do so). My flight to DC was non-eventful. Everything went fine. The return trip, however, was anything but.
My return trip was scheduled for March 20th. The flight was canceled due to inclement weather. I understand that is beyond the control of the airline, however, the actions of your employees are within the control of your airline and that is what I found to be inexcusable.
I was given notice through a text that my return flight on Tuesday the 20th was canceled. I spoke to one of your customer service representatives on the telephone and I must say, they were nothing but professional. They advised me of what was going on and told me I should try again the next day.
The next day, March 21st, I checked the flight information and my flight was still scheduled to take off at the scheduled time. I made my way to the airport only to be advised, after being there for several hours, the flight was canceled due to the weather. This made me extremely anxious which was exacerbated by my Alzheimer’s Disease. I approached the desk and, due to my anxiousness, I was having difficulty getting my words out. I advised the gate attendant that I needed assistance and information because I have Alzheimer’s Disease. SHE LAUGHED AT ME!!! 
I’m not sure if she thought I was joking or what was going through her mind, but her reaction was unfounded, rude, unprofessional and INEXCUSABLE! She then proceeded to tell me, “If you can’t tell me what you need, you’ll have to find someone to speak for you.”
As I stated in the beginning, I travel throughout the country as a keynote speaker and conference presenter, speaking very clearly, educating and making people aware of what its like to Live with Alzheimer’s Disease. I also travel on my own for it helps me to say independent. Throughout my travels with other airlines, I have NEVER received this type of treatment. 
Feeling dejected, I just turned and walked away. I could not believe what had just happened. I felt dismissed, unrespected and sad.
I made my way down to baggage claim and waited 2 1/2 hours for my luggage to be returned to me. One of your employees noticed I had been sitting there for a long period of time and asked for my claim ticket. About 30 minutes later, he returned with my bag. I was grateful. (by the way, I didn’t tell him I had Alzheimer’s Disease for fear I would be treated as I was by the gate attendant.)
The next day, March 22nd, the weather had cleared and I made my way back to the airport. Being still shaken by the way I was treated the day before, my anxiousness returned. I made my way to the gate to check in, as I always do, and again, my words were not coming out clearly. Another gate attendant working the desk said, “Are you drunk, sir? I can’t allow you to fly if you’re drunk!” I went cold.
2 days in a row, I was disrespected and treated extremely unfairly. I could not believe what was happening. Again, I turned and walked away. I sat in the section for people who need assistance. I was approached by an airline representative who heard my interaction with the gate attendant. She asked me if I needed assistance and I responded, YES. She told me to wait for her to come and get me and I would be boarded first. That is what I do every time I fly.
I then saw her go to the gate attendant and speak to her. She turned looked at me and went back to what she was doing as if I didn’t matter. By her unresponsiveness, I didn’t matter to her.
When the time came for the flight to be boarded, my new found friend came to get me, we boarded the bus and I was brought t the plane. I hugged your employee for being gracious, kind and human. I told her, “Thank you for treating me normal.” The flight went without incident except for a small delay.
I’m telling you about my experience for, as a person with an Invisible Disability, I was treated unacceptably on so many levels. In addition to my speaking engagements, I also train Law Enforcement in Crisis Intervention Team Training. I’m not sure what type of training your employees have but, in my opinion, training is needed. I would be more than happy to speak to your employees as to how to recognize individuals like myself who have an Invisible Disability such as Alzheimer’s or other Dementia-Related Illnesses.
I know you are a busy person, however, I sincerely hope and look forward to a reply from you personally. I also hope you put measures in place so this does not EVER happen to me or any other individual with a disability ever again.
I look forward to your reply.
Sincerely,
Brian LeBlanc

 

(response from the airline)

April 2, 2018

  
   

Dear Mr. LeBlanc:

Thank you for taking the time to speak with me on March 30, 2018 and April 2, 2018.  I hope your day is much better.

On behalf of XXX Airlines and XXX I appreciated the opportunity to address your concerns regarding your travel with us from Washington, DC on March 20, 21, and 22, 2018.

I am sorry for any confusion about our customer service policies and procedures, any misinformation you received and any discomfort or inconvenience this caused. While we do all possible to avoid disruptions to our schedules, sometimes changes are unavoidable. When disruptions do occur, we will do our best to minimize your inconvenience. I do, however, share your concerns regarding the insensitive behavior on the part of our personnel. We expect our employees to be courteous and helpful at all times and especially in situations such as you described. As we discussed on the phone a report has been sent to the DCA Station Manager the appropriate management personnel for internal review and handling of the agents behavior.

XXX Airlines must train employees with respect to awareness and appropriate responses to passengers with a disability, including persons with physical, sensory, mental, and emotional disabilities, including how to distinguish among the differing abilities of individuals with a disability. Based on what you said, it appears our employee could have handled your situation more appropriately. In this instance, from a regulatory perspective there is no violation since despite what you described occurred, XXX Airlines provides sensitivity training to all personnel. Please be assured your feedback is very important to us since it provides us with a measuring tool for customer satisfaction.

I understand that our promise to improve doesn’t change the inconveniences you’ve endured.  As a more tangible evidence of our concern and regret for your disappointing experience, I have credited 10,000 bonus miles to your account. This mileage adjustment will be reflected in your account very soon.While you are always free to contact the Department of Transportation Aviation Consumer Protection Division about the difficulties that occurred, I hope that I was able to address the issue for you. We look forward to having you on another XXX Airlines flight in the future.

Should you ever need assistance following a trip you’ve taken with us, call our Past Travel Disability Assistance Line at XXX-XXX-XXXX. We’re here to help.

Mr. LeBlanc, I appreciate the time that you have taken to write. We look forward to welcoming you on board an XXX Airlines flight in the future.
 

Sincerely,

  
   

XXX

Customer Relations

  

XXX Airlines

I look forward to your responses!

B

Hope for the Future?

Scanning the headlines under the topics of Alzheimer’s, Alzheimer’s Disease, Dementia and other related topics, I see a trend. The trend is for the future and that’s awesome. My hope is that no one will have to go through what I and millions of others have gone through and are going through now.  Trust me when I say, you DON’T want to experience Alzheimer’s Disease.

This is why, towards the end of every single presentation, I make this statement, “I made a vow to myself to share Alzheimer’s Education and Awareness for as long as I am able, in order to benefit those that come after me. I do this in the memory of the loved ones I have already lost, for the new found friends I have recently lost, and for the friends and loved ones I will lose.”

Scouring the headlines, as I do most every day, I see  I see things like:

  • Eat Healthy  (newsflash … we’ve been told to eat healthy for decades now. People have followed these programs exactly as they were laid. Some people still developed Alzheimer’s. My Mother ate healthy all her life, measuring her food on a food scale and eating her veggies and she still died with Alzheimer’s Disease.)

  • Excessive alcohol use linked to early-onset dementia risk (I have yet to see an Alzheimer’s / Dementia health warning posted outside a bar, restaurant, sports stadium or any other establishment that serves liquor. Even if these types of postings would start popping up, do you think it would make a difference?) 

  • Head injuries may lead to early Alzheimer’s (The NFL has made a difference by imposing new rules and bringing Dementia / CTE awareness to the forefront. However, pay close attention to the sidelines as to when a player makes a great play. Everyone gathers around the player and SLAPS HIM IN THE HEAD! and it’s not a little soft tap, and it’s not just once. Maybe they should look into that also. Just sayin’.
  • How daytime sleepiness may raise Alzheimer’s risk (This is my favorite. Do you know how many people may decide they need a nap during the middle of the day because they are tired but don’t do it now because they feel it may lead to Alzheimer’s Disease? So instead, to relax, they head to their favorite Sports Bar and have a beer.) 

There are a lot of things floating around right now appearing in the News Feeds, but in my humble opinion, it’s all speculation. This headline sort of summed it up for me and is also the most honest headline I’ve seen in a while:
Alzheimer’s Drug Trials Keep Failing —
It May Be Because We Don’t Understand the Disease

There is hope though. While Pfizer made the decision to back out of the Alzheimer’s Drug Research arena, enter Bill Gates and Warren Buffett, each contributing $100,000,000. It’s refreshing to see individuals like Gates and Buffett step up and do something like this, not for the glory but for the good of humankind.

Living Well with Alzheimer’s Disease is hard but as the saying goes, nothing worthwhile ever comes easy. Throw in the fact that there is no way to prevent it from developing, to stop the progression or to cure it, it has not stopped most of us from living somewhat of a positive, purposeful life.
It has also not stopped the countless number of researchers, drug companies, and benefactors from doing what they do each and every day to search for a cure.

I am confident that one day, there will be a cure. Before that, a way to stop the progression of the disease. Before or after that, a way to prevent from developing. Finally, after that . . . THE CURE.

Until then, I’m just going to continue living, as best I can, day by day, in the moment.

Until next time . . . PEACE!
B

NEW YEAR’S RESOLUTIONS: Make Them BUT, Be Smart About It!!!

Once again, a New Year is approaching. In my mind, I’m thinking, “Well, I made it through another year so I should be thankful for just that!” I also think, “what am I going to do in 2018 to stay both physically and mentally fit?” Well, the two go hand in hand.

Memberships for gyms and fitness centers explode in January because I believe, people really want to do something positive for themselves and being physically fit is a positive thing. However, it’s not for everyone. I know it’s not for me, but that doesn’t stop me from doing it on my own.

My resolution for this year is to stay “physically healthy”. I have enough “doohickey’s and “whatchamacallits” I can use to make myself more physically healthy (hand weights, resistance bands, etc…). I also have a dog as well as my own two legs to take me for walks. Last, but certainly not least, I also have my great-niece, Alexis, who is enrolled at LSU(GEAUX TIGERS!) majoring in KINESIOLOGY with a focus in Fitness Studies. (KINESIOLOGY is an academic discipline that involves the study of human movement, especially the role of physical activity and its impact on health, human performance, society, and quality of life.)  Alexis prepared a fitness plan that specifically meets my needs. (SHE’S AWSOME!!!)

In addition to staying physically healthy, I’m also vowing to stay “brain healthy.” A recent study published in the American Journal of Preventative Medicine states that doing physical exercise in combination with cognitive engagement can enhance brain health.

Having Alzheimer’s Disease makes it difficult to remember to do both the physical and mental exercises, but, that’s where technology comes in. In other words, I set reminders on my phone to alert me.

One of the things I do is to play “Words with Friends” on Facebook. Some people will play it for fun or for competitive reasons. I do it for brain health. Many of you who I’m connected with on Facebook may see an invite (or 2 or 3 ‘cuz I forget if I’ve already invited you or am already playing a game with you) to join me in a game of Words with Friends. Yes, I do it for the social interaction, but I also do it to utilize my brain. (NO, I don’t use any of the cheats. That would defeat the purpose) You will find that I lose A LOT of games but I don’t do it to win. I do it to push my brain to think.

There’s also an app called WordBrain where you try to make as many words as you can in a certain amount of time.
You can also play BOGGLE, Tetris, Word Search (either on an app or using a word search book). Word Whizzle is another game where you will see words spelled backward and forward.

I’m sure there are other games you know that can test your brain function and if you would like to share them with me, I would be happy to share with my readers.

My main message is to treat your brain as a muscle. It needs to be “worked out” in order to stay healthy. Will working out your brain stave off any type of cognitive impairment? Who knows? Will it erase Alzheimer’s or any other dementia? Not that we know of yet but, hey, it may help slow it down a bit.

What I’m trying to say is, not trying, at least for me, is not an option. I explore many options in hopes that I can slow my Alzheimer’s decline.

So, in 2018, don’t forget to work out that “brain muscle” as often as you can, because, ya neva know!!!

Until Next Time . . .
I wish you PEACE and a HAPPY NEW YEAR!

B

“Hey, Alexa . . . THANK YOU!”

“Hey, Alexa . . . THANK YOU!”

The Amazon Echo Dot can assist individuals with a dementia-related illness get through the day a little bit better. At a time when some folks are going tech-free, I’m discovering technology is actually helping me to live a better life.

Alexa

 


(I am in no way associated with Amazon and I have not been compensated in any way to write about the Amazon Echo Dot.

 

My reasoning for writing this is two-fold: 
1) while I appreciate humor, there is a fine line between laughing with people and laughing at people. 
2) I want to point on out how this device can really help those of us living with a disability, including cognitive decline.

Recently, I saw a Saturday Night Live skit regarding, as they put it, “people of a certain age” using the Amazon Echo Dot.  At first, I thought it was going to be funny. That ended when I realized they were actually making fun of older adults experiencing hearing loss and cognitive decline.
I’m including a link to the skit so you can make the determination on your own. 

https://www.youtube.com/watch?v=YvT_gqs5ETk

After watching the skit, I know some of you will find it funny and some of you will not.
In reading the comments made about the skit, I found one to be enlightening.
It read, “Laughing at the video. Then I realized this is video is about me in 30-40 years.”
How true those words may be. I sincerely hope, for this young man’s sake, they don’t come true.

Anyway, this post is not about SNL, this is about the Amazon Echo Dot and how I believe it can assist individuals with a dementia-related illness get through the day a little bit better.
At a time when some folks are going tech-free, I’m discovering technology is actually helping me to live a better life.

“The Amazon Echo Dot is a device that uses speech recognition to perform an ever-growing range of tasks on command. Amazon calls the built-in brains of this device “Alexa,” and she is the thing that makes it work. Her real smarts are on the Internet, in the cloud-computing service run by Amazon. The name Alexa can be changed by the user to “Amazon”, “Echo” or “Computer”.”
Amazon Echo Dot info

 

If you don’t know what the Amazon Echo Dot does, here’s how I use mine:

  • I use Amazon Echo Dot for a lot of things, like setting alarms to eat, reminders to take a bath, tell me the weather forecast … she will usually understand what you are trying to ask. If she doesn’t, she will let you know.
  • It can hear you from across the room or from upstairs with voice recognition, even while music is playing
  • I haven’t gotten to this point yet but if you really want to get fancy, you can purchase additional components that will allow you to control lights, switches, thermostats, etc. 

For those of us who are living well with a dementia-related illness, we may find ourselves being a bit more forgetful than what we used to be. I will only speak for myself and what I go through, for most of us have similar symptoms, but are affected in different ways.

One of the things I most like is the news feature, or “flash briefing”. Just say, “Hey Alexa, read me the news!” and she does, giving you headlines from all over. If you want her to stop, just say, “Alexa, stop reading news” or some other form of a command. My favorite is, “Alexa, when is the next Saints game” and she tells me the date and time. “WHO DAT!!!”

Alexa will also play music from your Amazon Prime Music selection. You choose the genre or something from your own personal playlist and she will play it. For example, at this time of year, I say, “Alexa, play Christmas music!” (I sometimes ask please without even thinking. I think she appreciates it!)

Although I have alarms and reminders on my phone to alert me as to what I should be doing at a particular time, I also use Alexa to remind me verbally. For example, I’ll say, “Alexa, remind me at 1:00pm to get ready for my speaking engagement at the Alzheimer’s Association at 2:30pm.!” She says it verbally and also sends a message to my phone. (by the way, if I don’t say am or pm, she will ask me.)

There are many other features the Amazon Echo Dot uses but I just wanted to highlight some of the features I use most often. Since this is the holiday season, for only $29.99, this would be a great gift for someone who may be starting to have some memory decline, someone who has had a dementia-related illness diagnosis or just something to have handy to make your life a little less complicated. Just an FYI, it also has a built-in bedtime story function for the kids . . . or even for you!

As a side note, you may also want to check with your cable provider. Their new remotes are now voice enabled. If you’re like me, I remember the network but I forget the channel number. Now, I just press the little microphone thingy (yes, that’s a real term, at least in my vocabulary), and say “NBC” or “FOX NEWS” or “HGTV” or “ESPN” and it goes directly to that station.

As I go further along my Alzheimer’s path, I’m always looking for ways to make my life a little less complicated. When I find something that works, I put on my Dementia Advocate hat (yes I have one but only wear it in private)  and share it with as many people as I can. I know that it may not work for everyone but if it works for a few, then . . . HOORAY!

As far as SNL goes, I know they will continue making fun of people. It’s what they do. I just hope they keep in mind that when they make fun of people with cognitive issues, it’s really not that funny.

Until next time . . .
PEACE and Merry Christmas!

~ Brian
“I have Alzheimer’s BUT it doesn’t have me,
for I don’t allow it to define who I am!”

 

 

 

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

IMG_2646

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