Spring Cleaning in Summer

Memory is the only way home. ~ Terry Tempest Williams

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This post is not about cleaning per say, but more like a rearrangement. You see, Maureen and I shared an office (our spare bedroom) and it worked for a while but with both of us having ZOOM Calls, conference calls and all kinds of other meetings, it began to be a distraction. So, since I am perfectly comfortable sitting on the sofa with my laptop, I decided to move out of the office and make the sofa my office.

The reason why I bring this up is because it shows that working together for a common goal is much easier than not.

What also happens is we find things that mean a lot to us that had been misplaced. These things can be be of little significance and some can be extremely memorable. One such memorable item appeared.

Years ago, my Step-Daughter, Asheton, gave me a book entitled, “The Book of ME” A Do-it Yourself Memoir. From what I remember, she gave it to me so that I could record events, celebrations, etc, things I would not remember on my own. She knew how very precious memories were to me and she wanted to give me a method to assist me.

It has long been an axiom of mine that the little things are infinitely most important.” ~ Arthur Conan Doyle

With all the moving I have done in the past several years, the book was misplaced. I would search for it every now and then but would come up empty handed. I was so scared it was lost . . . that was until 2 days ago when it appeared. Maureen came across it when she was looking through some boxes. She knew how important Asheton is to me for I talk a lot about her and how much I miss her. Being she thought enough of me to get me a book I could store memories in was so very loving and caring on her part. It’s just who she is.

Throughout the book, there are quotes from different writers and authors so I may place one here and there . . . like here!

“Do not trust just your memory; it is full of holes; the most beautiful prizes slip through it.” ~ Georges Duamel

As I started reading things I had written, (starting about 7-8 years ago, when i was 52 or 53 (pre-diagnosis, but from what I was told, I was already showing signs of memory loss and forgetfulness) I felt as if I was reading someone else’s journal. I knew I had written on the pages for I recognized my handwriting but it still seemed like it was written by someone I didn’t know or remembered.

One reason, besides the handwriting, I know it was me is when I answered this question . . . “What signature clothes or accessories do you usually wear?”
I replied, “Flip-Flops, shorts and t-shirts, tropical shirts, dressy clothes but only when I have to. The rest of the time I am just, “Casual Brian”.
I can’t remember who gave me that nickname but I believe it was one of Asheton’s friends. All I can say is, turning 60 in September, I’m proud to say I’m still “Casual Brian.”

“I didn’t really say half the things I said!”~ Yogi Berra

There’s a note in the book that I wrote to myself that states, “Asheton gave me this book. She said it wasn’t because I was losing my memory, but just so I can remember things in the here and now. What a beautiful gesture!”
That speaks to the person she was and still is.

Every now and then, a person comes into your life and changes it forever. One of those people is Asheton Gloria Hill. I have a vivid memory of when I first met her and Bradley, Shannon’s children. It was a Christmas Party at Shannon’s house for the Advertising Department of the Pensacola News Journal, where I met Shannon. I found a comfortable place on the sofa so I could see and interact with everyone and sitting at my feet was this beautiful, blonde-haired 12 year old girl. At one point during the evening, she looked up at me and said, “you know, you can never leave here!” I asked her why, and she said, “you have brought laughter into our house!” and she hugged my leg.

“Write down the thoughts of the moment. Those that come unsought for are commonly the most valuable.” ~ Francis Bacon

I hope I never forget that memory. That reminds me, I better write that memory in my book so that I WON’T forget it.

Asheton and Bradley lost their Father in 2009 and that was a very tough time for them both. During the following years they unfortunately had a front row seat to a couple of my surgeries (back and neck) as well as the beginnings of my Alzheimer’s Journey.

I was a different person during that time. I was very angry, confused and frustrated. I was a bit of an ass during that time and they (as well as Shannon) were there to witness it all. It is said so many times, “if I could go back in time . . .” Well, until the #BacktotheFuture DeLorian can really go back in time, we all have to live with our consequences. All we can do is ask for forgiveness.

Asheton is now is living living in Oregon with her Partner Chris. I miss her terribly but I know she and Chris are very happy. My hope is that I will see her again one day while I still have my memory.

Memory is way of holding onto the things you love, the things you are, the things you never want to lose.~Kevin Arnold

Until that time, I will, once again, start filling up my book with memories from long ago as well as memories from today, tomorrow and . . . . .
I owe that to myself as well as to that little 12-year old, blonde-haired girl I met one Christmas in many years ago and who has now turned into a beautiful, confident and happy woman!

Until Next Time
PEACE

B

Are There Do’s and Don’ts When it Comes to Dementia?

Are There Do’s and Don’ts When it Comes to Dementia?

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

  1. 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.
  2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am.
  3. 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.
  4. If I get dementia, ask me to tell you a story from my past.
  5. If I get dementia, and I become agitated, take the time to figure out what is bothering me.
  6. If I get dementia, treat me the way that you would want to be treated.
  7. 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.
  8. If I get dementia, don’t talk about me as if I’m not in the room.
  9. 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.
  10. If I get dementia, and I live in a dementia care community, please visit me often.
  11. 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.
  12. If I get dementia, make sure I always have my favorite music playing within earshot.
  13. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places.
  14. If I get dementia, don’t exclude me from parties and family gatherings.
  15. If I get dementia, know that I still like receiving hugs or handshakes.
  16. 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 . . .
PEACE

B

Don’t DO . . . BE, except . . .

Don’t DO . . . BE, except . . .

“When you “DO” for someone what they can do for themselves, you disable them emotionally.” ~ Jack Hosman (Maureen’s Dad)

I believe I mentioned this phrase before, “DON’T DO, BE” but in the “Dementia World” it is so very important and worth repeating.

Sometimes, Care Partners, family members and friends may see a PLWD (Person Living With Dementia) struggling to do something and their normal reaction is to jump right in and do it for them. You don’t want to see your loved one / friend struggle, so you help them.

Unbeknownst to you, your loved one / friend get’s extremely frustrated and lashes out at you. In your mind, you were only trying to help them.
In the mind of the PLWD, you took away their ability to figure it out for themselves and, without asking, jumped right in and did it for them. In a way, you paralyzed them.

I can talk about this at length for it is something Maureen and I struggled with when our relationship started and we continue to do so to this day. You see, she is a “DO-ER” and a “FIXER”. It’s just who she is.
On the other hand, I am a stubborn S.O.B. (and a slow learner) and I can do ANYTHING and EVERYTHING I set my mind to, but then reality (ALZHEIMER’S) steps in. That’s when I ask for help.

I have to say, most of the time Maureen is very patient with me. Of course that has a lot to do with my responses to her question, “Do you need help?” If I answer her in a not-so-nice manner like, “NO!!! I CAN DO THIS!” she gives it right back at me. She doesn’t do it to be mean, she does it because I have asked her to treat me as she would anyone else. I don’t want any special treatment.

When I am in my “FOGGY STATE of MIND” she doesn’t ask me anything for I am not able to answer her questions. I can barely make sensible words (from what Maureen tells me at a later time) but I still try. That’s the stubborn part of me that is, I guess, always with me.

You see, when I first started my Advocacy back in the beginning of 2015, I started using my slogan, “I Have Alzheimer’s, BUT, It Doesn’t Have Me” because I was bound and determined not to be recognized as Brian, the guy with Alzheimer’s. I wanted to still be known as Brian, the guy who is Living Well with Alzheimer’s and he doesn’t allow it to define him. I still believe that to this day. I figure, if I allow it to define who I am, then I have lost the battle and I am nowhere near that stage of my life yet. I still have a lot to do and a lot to say.

OK, I got a little sidetracked. Back to “Don’t Do . . . BE.”

As the quote stated at the beginning of this post, doing for someone without asking “disables” them. It doesn’t physically disable them, but it does emotionally disable them. It takes away their confidence and when it happens over and over again, they lose their self-confidence and increases their doubt as to what they can and cannot do. This could start a mental decline and that’s what I fight, every day, not to go down that path. I know it will happen but NOT TODAY!

Actually, Maureen not only allows me to “BE” but she now asks me to assist her with things she is struggling with. That gives me such a boost of confidence and strengthens our relationship.

One last thing I would like to mention is for the Care Partners that are assisting their person in a Care Community. What if your person is non-verbal? How do you know if they are struggling with something?
That would happen over time, as you get to know your person, you would become more familiar with the non-verbal signs of them struggling and they may become more comfortable with you assisting them. It becomes a partnership as well as a relationship . . . one person helping another.

So, my main message / suggestion to you is this, “if you see your loved one struggling with something, don’t be so quick to jump in and do it for them. Ask them if they need some assistance. If it becomes something that could lead to them hurting themselves, you may want to ask them again to avoid any type of injury. Yes, I know it’s a slippery slope but as time goes along, you and your person will start working as a team and they may actually start asking for your help instead of waiting until it frustrates them. That is something I still struggle with but, more times than not, I ask Maureen for assistance and she is only too happy to jump right in.

Just remember, “Patience is a Virtue!”

Until Next Time . . .
PEACE

~Brian

 

a-charlie-brown-christmasIf you’re a Baby Boomer like myself, you will probably recognize the photos from “A Charlie Brown Christmas.” For me, it brings back memories of happy, simpler times. That’s where Charlie Brown lived … in the simple times. Nothing really stopped him from doing the things he wanted to do no matter what others thought. He saw the beauty in things others didn’t. He was hopeful and did things in his own time. He was trusting … sometimes, too trusting.

Charlie Brown was just a simple guy who always saw the good in people, never judging, never holding a grudge. He’s described as, “Good ol’ Charlie Brown” is the lovable loser in the zig-zag t-shirt—the kid who never gives up (even though he almost never wins). He manages the world’s worst baseball team…yet shows up for every game. He can’t muster the courage to talk to the Little Red-Haired girl…yet keeps hoping. Even though he gets grief from his friends, his kite-eating tree, even his own dog, Charlie Brown remains the stalwart hero.”
CB Football
He is forever hopeful that Lucy won’t move the football. I think most of us wishes it will happen one day, so we cheer him on that he will, get to kick the ball at least once . . . but not this time. Lucy does what she ALWAYS does. She moves the ball away and Charlie Brown lands flat on his back.

We weren’t really surprised were we?
Charlie Brown was! As I said before, he always sees the good in people and he trusts they will not do anything to cause him harm. He trusts Lucy time after time. Why? Because that’s who he is.

(Just so you know, this post is not about Charlie Brown, but, you’ll understand in a little bit.)

Image result for charlie brown christmas tree

Lastly, there’s the Charlie Brown Christmas Tree that, in his mind, was the perfect tree. Of course, no one else but Charlie Brown saw the beauty of the simple little tree, and, as usual, they all laughed and made fun of the tree as well as him, “The Blockhead”, and hurt his feelings . . . AGAIN!

Maybe it was the Christmas Season that got to them, for this time, they saw just how much they had hurt Charlie Brown. 

Image result for charlie brown christmas treeWhen they saw the saddened little boy walk away as if he didn’t have a friend in the world, Linus anchored the little tree with his blanket and all Charlie Brown’s friends took the lights and decorations off Snoopy’s house and placed them on the tree. They brought Charlie Brown back to show him what they had done and he smiled so big. As with every Charlie Brown cartoon, he was accepted, everyone was smiling and singing and for a brief moment, everything was right with the world.

Now as a I said earlier, this is not about Charlie Brown and his friends. This is actually about reality in “Dementia World.”

Those of us who are living with a Dementia-Related illness sometimes feel like Charlie Brown. We have those days when we feel forgotten, dismissed, or if we don’t really matter. We sometimes come across people who we believe are our friends but turn out to be a “so-called friend” who pretend to have our best interest at heart, when all they are interested in is furthering themselves by using us to get there.

The feelings of abandonment and distrust we experience are not just about our friends but also about some  members of our family who no longer talk to us for whatever reason. We try our hardest to remember what we may have done to put this distance between us for we are certain (like Charlie Brown) it must’ve been something we did. When we come to the realization that it wasn’t us, it doesn’t feel any better.

When we are having a good day, we feel there is nothing we can’t do, so we take advantage of those days. We use our clarity to do something our minds would not allow us to do the day before, that is, if we remember the day before. Sometimes we do remember and we rejoice for the small victories. Sometimes we don’t and it’s OK because we know we’re not going to remember everything so we carry on the best we can.

Then there are the really tough days, the days when we go to kick the ball, and the ball is snatched away. On those days, we may literally fall on our backs, on our butts, hurting ourselves figuratively and mentally.  

If you’re thinking my point here is to make you feel sorry for me or for the millions of others who, like me, are living with Alzheimer’s or other Dementia- Related Illnesses you would be incorrect. Like Charlie Brown, we don’t give up . . . we CAN’T give up. Giving up is not an option. Giving up is an end and I can’t speak for everyone but I can speak for myself, I still have too much to do and I’M NOT READY TO GIVE UP!

What we do want are your friendships. We want your love. We want your understanding. This Disease is not something we asked for, this is not something we brought on ourselves, this is something that just happened to us and we are trying to make the best of the situation. 

Since this ’tis the Season, I ask you that if you know someone who is Living with a Dementia-Related Illness or any type of illness for that matter, please:

  • don’t assume we are receiving phone calls, letters, e-mails, Christmas Cards, etc. for you would probably be mistaken.
  • don’t assume we are being visited by friends and /or family for we may not be
  • don’t assume a gift card or other monetary gifts would not be appreciated
  • don’t assume anything about anyone, for you don’t know the whole story
  • the one thing you CAN assume is, “WE ARE STILL LIVING . . . WE ARE NOT GIVING UP . . . WE STILL MATTER . . . WE ARE STILL HERE!

I would like to take this opportunity to wish YOU, yes YOU, a Very Merry Christmas!

Until Next Time . . . 
PEACE (on Earth and good will towards men)

B

And So IT Continues . . .

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,
PEACE

B
 

 

Taking Care of Our Own

This post is a bit different from what I normally post. I don’t mean to offend anyone, I’m just passionate about what’s going in our Nation. 

For all the folks that want to open our borders to immigrants from other countries, immigrants who will be supported by us, I have a solution.
Open YOUR home to support these individuals as well as their families, and be responsible for all of their actions. Feed them, clothe them and take of their medical needs. That is what you want for them, right? 
Giving them an opportunity, right? Well, now you can. No, I’m not being negative or prejudice. I’m being real.

With that said . . .

Why not take care of our Veterans who need our care? You remember our Veterans? The ones who fought for our rights and freedoms? Our Veterans who, because of their service to our country make it possible for you to stomp on and burn our Nation’s flag? Our Veterans who have to wait because a non-US citizen “needs” medical treatment because they matter more?

Why not take care of our aging population, the ones who gave us life, the ones that took care of us first?

Why not take care of those of us who have a fatal disease and put those dollars into research, respite care and hospice care?

We need to take care of our own, before we begin to take care of others.

I’m sure you take care of your families first, making sure they have all their needs met. Why can’t we, as a nation, take care of each other first and then, and only then, look to taking care of others?

If you still insist on taking care of others first, let me know. I will gladly take donations to help fight Alzheimer’s Disease, the disease that assisted in taking the lives of many of my loved ones and will ultimately assist in taking my life. There are also other organizations that could also desperately use your help.

If you still insist on taking care of others, open your home to a Veteran, a member of the homeless population, or any other US Citizen that could use some help.

See what needs you can assist with in your own community. There are so many individuals right here in my community that are doing wonderful things for the betterment of the people that live here. They are awesome individuals who do these things, not to call attention to themselves, but because they are fulfilling a need for the individuals that live here.

Now, if you are STILL not satisfied, I’m sure there are many Middle Eastern Countries that will welcome you, as well as your support, with open arms and will even provide you with free housing. It may be cramped, dirty, hot and uncomfortable, but don’t worry, your visit will not last very long.

That is what you want, RIGHT?

Have a Great Day!

If You Can Reach At Least One . . .

Since becoming an Alzheimer’s Advocate, I have spoken to groups numbering 1 to 1,000. The locations have been auditoriums, small halls, retail stores, bars, and churches. Neither the number of people nor the location ever affects the way I share my Alzheimer’s story. I speak with the same passion, I speak from the heart, I speak from real life experience.

Shortly after my diagnosis in October 2014, I knew what I had to do. It was something I had been doing all my life . . . something I had done in my professional life. Since I no longer had a professional life, I knew sitting around watching TV all day was not going to do me any good.  I had to talk about it.

Alzheimer’s is a funny (not a ha-ha funny) disease, in that you never know what memories you will keep or forget.
One memory I have kept is of a wonderful Manager I had years ago. He was a retired Navy guy. I’ll call him, “Mike”. “Mike” was the BEST Manager I ever had for he pushed me. When he felt I wasn’t pushing myself hard enough, he called me a “Rack Lizard.” If I remember correctly, (and no, I’m not joking) a Rack Lizard was a Navy or military term used for someone who was a bit lazy, “laying around
 in their rack (bed) all day.) He used it not as an insult or not because I was lazy, but as a tool to push me to be better. 

It was in the early 2000’s, a very busy time in the Communications business for we were launching Digital Cable and High-Speed Internet.  We were knee deep in customer calls wanting information and technical support so we had to hire a large number of temporary employees to help with the overflow. I was the Technical Support Supervisor and I felt I was not giving my regular team members the proper attention. So I went to see “Mike”.

I told him I felt like I was not reaching all my employees and I didn’t want them feeling ignored or unappreciated. What he told me as a response to my concern was something that has lived with me to this day.
He said, “As much as you would like, you are not going to reach every single person. However, if you can reach at least 1 person and that 1 person succeeds because of your interaction, then you have done your job.”

It was awesome advice. From that point forward, I remembered what “Mike” said and it got me through some frustrating times. Although it was excellent advice, the flip side was you never really knew whose life you may have touched, who that 1 person is.
Well, I got see to see that 1 person.

I recently co-moderated a couple of focus groups. We spoke to 2 different groups and they were individuals with Dementia-Related Diseases as well as their Caregivers. The discussions ranged from how they (the person with the Disease as well as their Caregiver) are managing their lives to what they learned from their Physician when they were first diagnosed. 

The discussions were very interesting for I could relate to almost every person in the group. We may have had a different Dementia-Related Disease, but some of the symptoms are the same. The first group was a bit reserved at first but after they warmed up to us, they opened up. We felt it was a great success.

The second group was fewer in number but they opened up immediately. One particular person, I’ll call her “Sally”, was very anxious. She was there with her sister.“Sally” had not yet been diagnosed but was showing signs of someone with Early-Onset Alzheimer’s. (I am not a Doctor and my opinions are my own.) Her sister said she had become extremely forgetful and was getting wore.

From what her sister shared with us, “Sally” was consistently worrying about things she forgot about the day before. She was forgetting about the present day and was not remembering what was going going to happen tomorrow. Basically, she was worrying 24/7 and not really focusing on the here and now.

As I said previously, “Mike’s” advice had a huge impact on me, so much that I use it when I give my “Alzheimer’s: Up Close and Personal” presentation.
It comes in the latter part of the presentation . . . “As much as I would like to reach every single person in the world, I know that is not possible. However, if I can affect at least one person in a positive way, I am doing my job.”

I gave “Sally” some of my own advice that worked for me. I told her (and reminded her sister to help her remember) to let go of the things she forgot about the day before and not worry about tomorrow. The only thing she could do was to live in the here and now . . . LIVE IN THE MOMENT! She began to repeat the phrase over and over as if she was trying to burn it into her brain. Surprisingly, it calmed her, not completely but she was a lot better than what she was. Her sister told me she would help her to remember.

 Now, when I talk to folks, I don’t usually see them again, unless I go back to that same group. Being I was out-of-town, I knew I would probably never see these folks again. I would have to hope that my words helped them in some way . . . not everyone, but just one. 

The next day, I was going back to my hotel and I was hungry. I figured I would stop off at Publix and get both lunch and dinner so I could just eat in my room. I was at the deli counter when I heard someone saying, “excuse me sir . . . excuse me sir.” I turned and it was “Sally’s” sister. She said, “It IS you!” then proceeded to give me a great big hug.

She said, since they left the focus group, “Sally” was changed. She was a bit more relaxed and would say every now and then, “I’m going to live in the moment.” She thanked me for making a difference in “Sally’s” life by listening to her and giving her advice that truly made a difference and had a positive impact. I immediately thought of “Mike” and how finally, after all these years, I experienced “THE ONE!”

We spoke for a few more minutes and I left to go find my dinner. I admit, I was a bit teary-eyed after experiencing something I thought I would never experience. But my joyful moment was interrupted by another voice . I heard, “Mr. Brian . . . Mr. Brian, is that you?” Lo and behold, it was “Sally”. She was waiting for a prescription. She ran up to me and gave me a great big hug, saying, “Thank You, Thank You, Thank You! You changed my life!!!”

I may have, but I don’t remember ever hearing those words before. I just let her hug me and I hugged her back. She told me she had been “Living in the Moment” since the day before and she didn’t even worry about things she forgot. She said she slept the whole night through for the first time since she could remember. She couldn’t thank me enough and she would never forget me and would pray for me and my family as I lived with my Alzheimer’s.

What a WOW moment!!! It was an incredible feeling but also very humbling. Once I got back to  the car, tears flowed. I have given that advice to probably thousands of people and not once has it come back like this. It was a life-changing moment. Now that I have it in print, I will be less likely to forget this experience but if I do, I’ll remember when I re-read this.

I owe a debt of gratitude to “Mike” for sharing his knowledge, his experience and his words of wisdom with me, oh those many years ago.  “Mike” your words have served me well, sir and in case you haven’t experienced “the one”, well he’s writing this blog post!

Now, about that Rack Lizard term . . . .  🙂

PEACE,
B

Just Imagine

Just Imagine

Spring! A time of renewal. Flowers bloom, sending their floral scents into the air; animals awaken from a long winter slumber and newborns take in their first breath. The earth awakens, “springing” into beautiful, colorful life again.

Spring takes everything old and makes it new again . . . or so it seems.

Just Imagine if we could do that with our brains? Our bodies? Our Society? Imagine developing a mental or physical illness in the Summer, Fall or Winter, then going through a transformation or renewal, come Spring. Everything would be new again.

Just Imagine awakening to a world with no hatred, violence, hunger or poverty.

John Lennon had it right when he penned the words:
“Imagine no possessions. I wonder if you can.
No need for greed or hunger. A brotherhood of man.
Imagine all the people, sharing all the world.
You may say I’m a dreamer.
But I’m not the only one.
I hope someday you’ll join us.
And the world will be as one.”

How I wish this were true. In a perfect world, it would be, but we all know perfection is hard to come by.

Just Imagine if I awoke this morning and I would have been mentally renewed. Instead, I woke up and had no idea what day it was. I had no idea the season had changed. I didn’t know what happened yesterday or the day before for that matter.

Just Imagine if everyone who has Alzheimer’s or other Dementia-Related Illnesses woke up tomorrow morning and there was a cure or a way to stop the progression or a way to prevent this disease? What a day that would be.
Unfortunately, I know this will not happen tomorrow, next week, next month or next year. I still have the wherewithal  to know a cure will not be found in my lifetime, but it doesn’t stop me from advocating.

It didn’t stop me from advocating when I went to Tallahassee to speak to our FL Legislators regarding state funding for our aging population.
It’s not going to stop me from advocating when I go to DC in April to speak to our Congressional Leaders about funding additional dollars for research.
It’s not going to stop me from advocating at my next presentation, whether it be 1 or 1000.

You see, I advocate for the next generation, for those individuals who come after me, in hopes a cure will be found for them.

Until then, I will continue to . . . Just Imagine.

 

PEACE,
B

 

LeBlanc: Coping With Early On-Set Alzheimer’s

This is a transcript from the 3rd interview in a series I did with the University of West Florida’s Sandra Averhart of WUWF. I’m also including an audio link to the actual interview.

http://wuwf.org/post/leblanc-coping-early-set-alzheimers#stream/0

Since November of 2015, we’ve been getting to know Brian LeBlanc of Pensacola. He has been diagnosed with early on-set Alzheimer’s. Now in his mid-50’s, he has known about his condition for a little over a year now. As we continue our conversation, we focus on how the disease has impacted his daily life and how he’s dealing with it.

Brian LeBlanc of Pensacola, who’s sharing his story of life with early on-set Alzheimer’s disease.

“Being this is radio, you can’t see what I’m doing right now, but I’m holding up my cell phone,” said LeBlanc. “That’s my constant companion.”

According to LeBlanc, his phone tells him everything, even when to eat.

“Over the past year, probably, I’ve lost probably around 30 pounds. It wasn’t because I was trying. It’s because I was forgetting to eat,” he said.

It was his sister who made note of his weight loss, when she visited a few months back. LeBlanc thought to himself, “I’m just eating healthy.” That was until his wife pointed out the reality that he wasn’t remembering to sit down for a meal.

As a result, he now has reminders on his phone of when to eat, when to take medication, and when to do things such as check the mail or let the dog out.

“Um, without it, I simply would not remember, because you can’t,” LeBlanc said.

Repetition is another aid that he utilizes, noting that before our first interview at the WUWF studios, he must have looked at the email 20 times.

The email was sent to him by Dr. Rodney Guttmann, Director of the University of West Florida Center on Aging, who first proposed the idea of LeBlanc sharing his story with the WUWF audience.

Our first interview was on a Tuesday. But, when it comes to the specific days of the week, LeBlanc says he says he has no idea.

“I know numbers. I can look on a calendar and I’ll see the tenth, you know, be here,” said LeBlanc. “But I don’t know the days of the week anymore.”

LeBlanc can identify weekends, he says, because his family members are home for two days in a row. But, confusion sets in if you throw in a weekday holiday or a three-day weekend.

“That messes me up, really bad,” said LeBlanc.

As a result, his daughter, who’s in college, will write her schedule on a board indicating when she’ll be away and when she comes home.

LeBlanc says access to such information is helpful because he’s found that he doesn’t do well with surprises.

He and his family members also have noted more frequent mood changes.

A friend of his talked about a feeling in the front part of his head that he couldn’t explain. LeBlanc referred to it as being his ‘fog.’

“As hard as you try to see something you just can’t,” LeBlanc said. “Sometimes, it’s completely shrouded. Sometimes it’s in the middle; it depends. But, you can’t see, and it comes and goes. It’ll come in, roll in, roll out.”

It’s on those ‘foggy’ days when LeBlanc can’t get behind the wheel of a car.

Right now, he’s functional and GPS is his best friend. But, he fears getting lost, which triggered his diagnosis, and he has no comfort that he’ll arrive at his intended destination.

“I’m extremely nervous about driving,” said LeBlanc. “That’s why I’ll only go places that I sort of know.”

LeBlanc says he prefers simple routes, without too many turns, adding that under no circumstances can he drive at night.

“That’s completely out of the question, because, I look for landmarks or street signs. At night I can’t see them and it’s not good.”

At night or when he’s in a fog, LeBlanc’s wife and daughter drive him around. Again, LeBlanc is still capable now under certain circumstances, but he knows it won’t be long before he’ll have to give us driving altogether.

“I’m worried that not only will I harm myself,” LeBlanc said. “But, if I harm someone because I was confused, I would never ever be able to live with myself with that.”

In particular, LeBlanc does not want to have to experience what his father went through when LeBlanc’s oldest brother took his keys away from him.

“My father, he forgot a lot of things, but he never forgot that.”

And, as we wrapped up our first extensive conversation, LeBlanc was feeling pretty good about the fact that he made it through the interview without notes. His public speaking on behalf of the Alzheimer’s Association has helped.

He’s part of Alzheimer’s support groups and serves on the executive committee of the Florida/Alabama Panhandle Alzheimer’s Association.  Also, LeBlanc is chronicling his experiences in a blog, Alzheimer’s: The Journey…my Alzheimer’s Life.

In general, though, he says speaking isn’t nearly as easy as it used to be.

“People used to tell me I could talk to a tree and have a conversation,” said LeBlanc. “But, now I have to choose my words, thinking before they come out of my mouth to make sure that they sound okay.”

They do sound okay, and in 2016, we hope to hear more from Brian LeBlanc, talking about the changes in his life due to early on-set Alzheimer’s and how he’s coping.