I Surrendered

Featured

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 . . .

PEACE!

B

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

Happy Mother’s Day

With Mother’s Day being celebrated this Sunday, I wanted to pay homage to ALL MOTHER’S (and this means all individuals who fit the role of a Mother regardless of gender) who selfishly give of themselves, day in and day out.

(Just so you know, I wrote the following Mother’s Day Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written but I thought it appropriate to repost it with a few additional words and photos. The additions will be in italics and bold.)

Holidays. There are so many holidays on the calendar that it’s difficult to keep track of them all. Some of them are legitimate and some are just made up for some reason or another.
The one holiday that I truly believe is the holiday of holidays is Mother’s Day. The reason I say this is because, without Mother’s, none of us would be here. Sure, the Father’s had a little something to do it with it but the Mother’s are the ones that carry the burden.

In an effort to explain the importance of Mother’s, I went to merriam-webster.com to look up the definition of “Mother.”Mother's Day
This is what I found:
a :  a female parent
b    (1):  a woman in authority; specifically:  the superior of a religious community of women
      (2) :  an old or elderly woman

First, let me say I believe Merriam-Webster needs an update.
Second, I apologize to all Mother’s, both female and male (who assume the role) for the insincerity of the definition.

While I am no expert, and not a recent guest of a Holiday Inn Express, (hope you get the joke) I would like to give my own definition, or explanation, of what a Mother is.

A Mother is someone who:
– can soothe anything, no matter what the age, with a hug and a kiss
– will fiercely protect her family like a lioness protects her cubs
– praises their children for the good they accomplish but also holds them accountable for any and all of their wrongdoings
– can make your favorite meal impossible to replicate because of her “secret special ingredient.”
– can assume the role of sole provider when no other support is available or not given
– can assume the role of caregiver of a spouse/significant other, parent or grown child when that individual is no longer able to support or provide for themselves.
– rises from her sickbed to take care of her family no matter how bad she feels
– consistently puts others before themselves
– loves unconditionally

A Mother's Love

I could go on and on, however, I think you can see that a Mother cannot be defined by any one definition, especially by the definition provided by our friends in the dictionary profession. A Mother’s definition (can change on a daily or hourly basis or at a moments’ notice.) Defining a Mother is almost impossible because of the infinitive person he/she is.

In addition to caring for her children, most Mother’s are also wives, which involves taking care of a “bigger child” with a different set of issues altogether. Most of the time, that “bigger child” has no clue as to what his wife does on a daily basis because he is too busy complaining about his day, playing golf, getting together with his friends, playing X-Box, Fantasy Football, etc. (Just to be clear, I am not grouping all Men/Husbands into this category, but YOU know who you/they are.)  😉

(My Mother was a stay-at-home wife and Mother. She not only cared for her 5 children (all born within 10 years) she also cared for my Father who, those of you that knew him, could be more than a handful. She did everything that was asked of her and more.
As her own parents aged and then became ill (my Grandmother, unable to walk due to a spinal issue and my Grandfather with Alzheimer’s) my Mother and her sister cared for them.
Later, my mother helped my Sister take care of her daughter, Mary, who was taken from us in 1998 due to Cystic Fibrosis.
Then my Mother helped take care of her own sister Carol until her early death.

She was one of the strongest women I have ever known, but I see a lot of her in my Sister as well as my wife Shannon, who is now my Primary Caregiver. Like I said about my father, those of you who know me understand what a job that must be for Shannon. She is more than a wife and Mother, to me, she is My Hero!

So, for most of my life, I’ve been surrounded by these very strong women, women who have put themselves and their needs last for the benefit of the families they care(d) for.
I know there are many other Mothers in the world who are just like the women I know and love, but as usual, they fly under the radar, some staying as far back in the background as they can so that their “SUPERPOWERS” can remain a secret. However, those that truly know and love them, their secrets have long been revealed.

In my definitions of a Mother, one of the things I stated was, A Mother is someone who: rises from her sickbed to take care of her family no matter how bad she feels.
When my Mother was stricken with Alzheimer’s, over time she forgot how to do things, forgot what things were, but she still tried. She still had that Motherly Instinct inside trying to get out.

Finally, when she lost her ability to speak, she would sing. (She sang in church for over 40 years and she loved movie soundtracks, especially The Sound of Music. When she would clean, she would put that soundtrack on and just sing away as she cleaned the house.) Although Alzheimer’s took away her speech, she kept that perfect pitch. No longer knowing the words she would make up words or say la la la la, but I could recognize the song. I truly believe it was her way of saying, “Here, let me make YOU feel better by singing to you!.” Even if that wasn’t true, I don’t care. No one can disprove it so I believe it to be true because that’s who my Mother was . . . and although no longer of this earth, STILL IS!

(As a side note, in the last few hours of her life, I was the one singing to her. My sister held the phone up to her ear and I sang her a song.
There was eye movement as I sang as if she was actually hearing my voice. It is said of Individuals with Alzheimer’s, the hearing is last to go. My sister and I will ALWAYS believe she heard the music she so loved. A few hours later, she passed away. With that said, NO ONE will ever tell me the power of music does not matter.) 

Mom's Hands
(I’m not sure of the date of this photo but I do know this is the last photo I have of my Mom and me. She NEVER, EVER went out of the house without makeup on or her hair done, let alone take a photo with no makeup on so I didn’t dare post a photo of her with no make-up or with her hair not done. I wanted everyone to remember her how she was . . . BEAUTIFUL!
At one point during my visit, she reached for my hand with both of hers and we just held hands in silence, looking at each other, she towards the end of her Life with Alzheimer’s and I, just starting out. I’m so glad I was able to capture this moment and although we were silent, I felt we had a great conversation.

So to all the Mother’s in the world, regardless of whether you’re married, divorced, single, an adoptive Mother, a Father filling the role of a Mother, I hope your Mother’s Day is everything you want/need/hope it to be. We all know you deserve much more than just 1 day a year and hopefully, you receive it.

(I will never forget one of the priests at St. Agnes Parish in New Orleans, Fr. McCallion. He had a very strong Northern accent, but it fit right in with what we call a “New Orleans Accent.” Anyway, even to this day, at the end of his homily, I can still hear him giving his Mother’s Day wish as only he could.
” . . . and lastly, I would like to wish all you Mudda’s and Happy Mudda’s Day!”
It would get as big a laugh as it just gave me when I typed it.

So, in the words of Fr. Mac . . . HAPPY MUDDA’S DAY to my Mom, my Sister, my wife and to each and every Mother who reads this!

Until Next Time . . .
Peace!
B

Mother's Day

Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

13528784_10208116077473971_837420341758672808_n
Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

Don’t Wait until it’s Too Late!

It’s Valentine’s Day once again . . . the yearly celebration of love, romance, flowers, chocolate and Hallmark cards. It’s a Day set aside every year to remind those of whom we love just how much their love is appreciated.

For those of us with Alzheimer’s, we may not remember from one day to the next what day it actually is. Tomorrow, we may forget that today was Valentine’s Day, yet we will still tell (and show) our Spouse/Significant Other/Family/Care Partner just how much we love them. For us, without really knowing, every day could be Valentine’s Day and we wouldn’t have a clue.

 

calendar
My actual calendar

To be honest, the only reason I know It’s Valentine’s Day is because it says so on my calendar. It may sound strange but I no longer know what day it is. I go by the numbers of the month. I sort of know when the weekend is because everyone will be home. I still won’t know if it’s a Saturday or Sunday but I will know it’s a weekend. 3 day weekends, however, confuse the hell out of me. Looking at the calendar now, I see tomorrow is Presidents Day . . . a holiday . . . CONUFUSION DAY!!! LOL

 

But back to Valentine’s Day. I tell my Wife / Care Partner / Best Friend Shannon “I LOVE YOU” several times a day. I do the same with Asheton and Bradley. For Shannon, I will write her a note and leave it on her pillow or bedside table, send her a text or an e-mail, not just on a holiday, Anniversary or special day, but on any day, at the moment I think of it. If I don’t, I’ll forget. For the kids, I’ll send them a corny joke or just a little something just so they know I am thinking about them.

Why should we wait for a special romantic holiday to tell our special someone how much we love them and how much we appreciate all they do for us? One day, we will not be able to communicate those things with whom we love the most. I don’t know about you, but I don’t want my family to ever wonder how much I loved them or if I ever appreciated them. I want the last words they ever hear from me, the last words I want them to remember me saying, is “I LOVE YOU!”

I guess what I am trying to say is, don’t wait for a holiday to come along to tell your lovedIMG_1559 ones just how much you love them. And no, I’m not just speaking as someone with Alzheimer’s, I’m speaking just as a person. You never know when that “last time” you see or speak to someone will be. So, don’t let a card say the words for you. Say the words with your own voice. Don’t wait until you’re not able to communicate to then try to communicate your feelings. Tell them now and tell them often.

Although I won’t remember saying those words to them or hearing those words from them, they will remember hearing those words from me and hopefully, feel them in their heart forever.

To me, that’s all that matters.

PEACE,
B

The Disease that Keeps on Taking

This morning when I opened up Facebook, I saw I had a message from a good friend of mine. It read, “My thoughts, love, and prayers are with you today.”
I thought to myself, “How very nice of her to say this.”
Then I read it again and thought, “This is what people usually say when you’re having an operation or you’re starting a new adventure or when you lose someone.”
So, I wrote back to her saying, “Thank You, but why do you say this today?”
Then I looked at the date, January 14th, and tried to think of anything that happened on this day.
Sadness all of a sudden overtook me.

10830689_10204543352758086_1036799725875045458_oI walked over to my desk to look at my “reminder board” and at the top are 2 Prayer Cards from the funeral services of my Dad (2/8/10) and Mom (1/14/15). I knew before I looked but I had to verify, not just that today was the 1 year Anniversary of my Mom’s death, but to realize I had forgotten.
Hours later as I am writing this, tears still flow, not just because she is no longer of this earth but because of the disease I share with her, the disease that took her mind and memories, that same disease that is now taking mine . . . Alzheimer’s.

You know, it’s strange how the Alzheimer’s mind works. The memories don’t come back on their own. A bit of prompting is needed. So, as I sit here trying to remember details of that day, the one and only memory that comes to mind is of a phone call from my sister.
When I first saw her number pop up I froze. You see, my Mom had a stroke a week or so previously and she could no longer chew her food, or swallow for that matter, so a decision was made to allow her to be comfortable and pass away in peace. (This may not be exactly factual but it’s the way I remember it and that’s good enough for me.)

Anyway, my brothers, my sister, my nieces and nephews all went to say their goodbyes10931127_10204543328837488_6014411360357330344_n but my Mom, who always had a strong will, just kept hanging on, as if she was waiting for something. That is what prompted my sister to call.

You see, I live in FL, I was just diagnosed with Early-Onset Alzheimer’s about 2 1/2 months previously and I was only driving sparingly. Making a trip at that point was not possible.
Anyway, my sister called and said, “Everyone has been by to see Momma, everyone but you. I know you can’t be here physically but I think she is holding on to hear your voice. I’m going to put you on speakerphone and I want you to tell her good-bye and that it’s OK to go.”
It was the hardest, yet the most beautiful thing I have ever done.

So, I had a “one-sided” conversation with my Mom. I told her about my Alzheimer’s diagnosis and since we shared so many things in our lives (I was the youngest and a bit spoiled by my Mom and my sister) why not share Alzheimer’s as well.  I told her how well I was being taken care of by Shannon, Asheton and Bradley and how I couldn’t feel more loved.
I then told her that it was OK to go. It seems she had taken care of so many people during her lifetime that maybe she felt she still had more to do. I let her know that everyone was in a good place and that she could now go where she could finally rest. (like I said before, this may not be EXACTLY what I said, but it’s what I remember).

My sister told me that while she was listening to my voice, there was eye movement under her eyelids as if she was aware. I’m not sure if that was possible but because we know so little about Alzheimer’s, anything is possible. I don’t remember if I sang to her to her or not (we shared a love of music as well as singing) but I would like to think I did. I told her I loved her and then spoke to my sister gain.

A few hours later, I received another phone call to let me know she was gone.

As hard as I try, I don’t remember anything of the days that followed. Maybe that’s a good thing. I’m sure they were filled with sadness and I’m probably better off not remembering.

All of this makes me wonder . . . “Do people in the last stages of Alzheimer’s still hear and understand but just can’t communicate back?” I hope so. I hope I can still hear the voices of my loved ones when my time comes. I want to hear their voices and music and all the things that make me happy. I can only hope.

Next year, I don’t know know if I will forget this day again but if I do, I hope someone will remind me. For now, for today, while I still do remember, I will think fondly of the woman who . . .
– gave me life
– taught me to always open doors for people – especially ladies and the elderly
– to say yes sir and yes ma’am
– taught me to always carry a handkerchief
– shared with me her love of music and gave me my singing voice
– loved me unconditionally and with all her heart

I love you Mom and always will.
Rest in Eternal Peace. Hope Dad isn’t bothering you too much and I’ll see you soon.
At that time, we’ll find some place to sit, put on the Sound of Music soundtrack, sing and reminisce . . . clearly.

Until then, I will keep on keepin’ on, trying not to burden Shannon and the kids too much and continue doing what I do and I do it in honor of YOU!

PEACE
B

 

 

 

 

 

 

The One Good Thing

The one good thing, if there is such a thing, about having Early-Onset Alzheimer’s is the long term memories are still intact. They pop up at any time, day or night, with no rhyme or reason. They are just there like an old friend, ready to reminisce and bring a smile.

At 55 years old, I have a lot of memories floating around in my head. Being it’s the Christmas season, those memories are of growing up with my brothers and sister, racing to the Christmas Tree on Christmas morning to see what Santa brought us. Mag_transRED_AM-62_webI’ll never forget my first transistor radio. 1968. It was red with a black, leather covering. I asked my brothers what station I should listen to, they told me and the first song I heard was “Sky Pilot” by The Animals.
My Mom tried to suggest I listen to talk radio. lol  I stuck with the music!

A few years later, I got a green bike with green, metallic banana seat. It seems all the kids in the neighborhood got new bikes that year and despite the cold wet weather, we had to go outside and ride them.

Another year was walkie-talkies.

I remember my favorite toy of all time…a milk truck. When the door opened, a milkman swung out holding a bottle of milk. It was made of cast iron. My sister, whom I love and adore with all my heart, sort of bent my milk truck. I won’t say how, but the little milkman never swung out the door again!  😦

Then there was the Christmas, once we were older, my oldest brother got us all silk underwear. We still don’t know why, but it was a great gift!!!!

After a number of years, I started gaining weight . . . a lot of weight, enough to take on the role of playing Santa Claus. That was a lot of fun but putting on that Santa suit in the humid Louisiana December weather was no picnic. I lost about 10 lbs inside that suit.  🙂

My Mom loved the Christmas Season and she made it so special. Right after Thanksgiving (you remember when there were no Christmas decorations

IMG_2291 (Edited)
This is a pic I took of one of the actual albums my Mom used to listen to. They were distributed by GoodYear and Firestone 

displayed BEFORE Thanksgiving)

she would start playing her Christmas albums, singing along with Andy Williams, Johnny Mathis, Mahalia Jackson, Barbra Streisand, Steve Lawrence and Eydie Gourme, as my Dad climbed up in the attic, cursing, yelling, hitting his head while getting the Christmas decorations down.

 

On Christmas Day, Mom would break out the “once a year Christmas China.” She had just enough for the adults while the kids ate at the kids table, eating off the everyday plastic plates. I felt so grown up when I was not only allowed to eat off the Christmas China but to sit at the grown-up table. The food actually tasted better! But, enough about me.

We have a saying in our family that no holiday or family get-together was complete unless my Dad (who was known for his temper) didn’t get pissed off at someone or something.

One Christmas, I don’t remember the exact year, but it was probably in the 80’s, my Dad, as usual, got pissed off at something. One by one, my brothers (I have 3) their wives and my sister all headed for the smoking spot (the front porch) to have our “after dinner smoke.” Of course, the topic of conversation turned to the times Dad would get pissed off. We laughed and laughed and were having the best time when the front door opened and my Mom came outside. We all quieted down and looked at her. She looked at all of us with such a serious look on her face and said, “I sure wish I smoked, but I gotta go back in there!”
We lost it. She started laughing. As she walked back inside, she turned around and said, “oh sure, y’all just stay out here and laugh!” with a smirk on her face, which made us laugh even harder. That was my Mom.

She had such a great sense of humor. I guess she had to, being a stay-at-home Mom, having 5 kids in a 10-year span. She had to find the humor in anything she could. In my opinion, she loved Christmas the most. She knew the family would all be together and she would fix our favorite things. She got joy out of that.

Although Alzheimer’s affected her memories and all else that came with it over the last 10-15 years of her life, I hope some of her long-term memories were still there. I hope they brought a smile and a warmth to her heart.

Being the youngest child, my Mom and I shared a lot of things. Music is my favorite . . . Alzheimer’s is my least favorite, but I like to think that my Mom, being my Mom, somehow knew I would be the one to share her Alzheimer’s so she showed me how to live with it gracefully. When it gets tough, and it does (I’m not always the happy person you see in pictures and unfortunately, I do have a bit of my Dad in me that comes out every once in a while) I feel her with me, calming me down.

My Mom also collected bells, little decorative bells, some bigger bells, she just liked them.01043e4af1cb1845977d37e9119f4c5ba7a4af24da

Thanks to my wife, the bells continue to ring. Since we have a love for
Disney, she combined our interests and gets Disney Bells every year for the tree. I can’t tell you what that means to me. I hope that tradition continues within my family for years to come.

This will be the first Christmas Mom will not be of this earth. My Dad passed away 5 years ago so at least they are together again. I just hope he has learned to calm down a bit. But if not, I’m sure Mom will take a walk out to the front porch, breathe in a breath of fresh air and go right back in to calm him down.

Merry Christmas, Mom . . . and you too Dad!  🙂

This is from one of my Mom’s Christmas albums:
Doris Day –  Silver Bells

ENJOY and have a Very, Merry Christmas!

 

Welcome to the Dark Side

When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.

Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.

Welcome to the Dark Side!

Below you will read an excerpt from a presentation I recently gave:

(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)

Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.

I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it,  but it sneaks up on you like a sucker punch.

Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!

You fall to the mat, you hear the Referee start the count … 1,2,3 …

you try to get up,  but you can’t move, you’re just numb … 4,5 …

you shake your head trying to get a little bit of  clarity … 6,7,8 …

the numbness starts to fade … 9 …

you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”

You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.

You find a strength you never knew you had and you rise to your feet before the count gets to 10.

Now I know that was a bit dramatic, but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.

My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”

Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.

You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!

I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!

So, each and every day when I wake up, I get up and make a difference.

It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.

I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.

I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.”  Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.

What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before.  I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.

One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.

Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.

When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me.  I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.

This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book!  😉

The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.

I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.

They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.

 

Until next time,
PEACE!!!

B
Pensacola, FL

The “First Day of School” Thing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until Next Time,
PEACE

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

Thank Goodness My Long Term Memory is Still Intact

This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.

22205_10205504736592081_2017706285402144758_n
I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)

It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling 11219047_10205504736072068_5639772073333305210_nevents from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.

One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.

Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.

11247074_10205504736912089_1971133805939850598_n

Flash forward to the present and the “not-so-clear-memories.”  If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.

Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”

My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”

It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.

Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and 10416617_10205504735472053_8447422720410854227_nwho I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.

As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.

Until next time,

PEACE
B