In Remembrance of Mary

I wrote this original post 3 years ago but being today is a sad Anniversary for my family and I, I wanted to repost it with some changes.

~B

In 1998, my world was changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”

She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought so hard during all 22 years of her young life.

Mary passed away on October 14, 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which was in September. It was a huge surprise.

I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson.

I miss her so very much but I know she is with my Mom, breathing with no issues, laughing, telling stories and at peace.

Missing You,

Your Favorite, Uncle B

❤️🌹

Dying with Dignity

I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
– I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
– I want them use my organs to keep someone else alive.
– I want them to use anything they can to benefit others.

I can’t think of a better way to help others, rather than just put me in a hole in the ground.

In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

Like I stated above, this is not for me but I respect those who choose this alternative.

So, what do I want to happen during the dying process?

  • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
  • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
  • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

    This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
  • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
    I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

Some things I forgot to mention was, I want to have a Celebration of Life.

I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

Doing this is one of the greatest gifs YOU can give to your Loved Ones.
DON’T WAIT UNTIL IT’S TOO LATE!!!

Until Next Time . . .
PEACE!!!

B

World Alzheimer’s Day

Each Year on September 21st is World Alzheimer’s Day.
I will start out with what IT’S NOT!
* IT’S NOT a day of Celebration!
* IT’S NOT a National or International Holiday!
* IT’S NOT a day for cookouts or Backyard Bar-B-Ques!

What it is, is a day to call AWARENESS to
* a Disease that has NO PREVENTION!
* a Disease that has NO WAY TO STOP the PROGRESSION!
* a Disease that has NO CURE!

I guess you can see why I don’t exactly call this a “Day to Celebrate.”

You will probably see a lot of photos on Facebook, Instagram, Twitter and other Social Media of individuals wearing purple. It’s a way of calling awareness to a Horrendous Disease.

One of the strangest things about this disease is it doesn’t exactly cause people to die. According to the Alzheimer’s Association . . .
” Alzheimer’s disease leads to nerve cell death and tissue loss throughout the brain. Over time, the brain shrinks dramatically, affecting nearly all its functions. “

It is said that no one dies from Alzheimer’s, instead they die with it.
To put it in plain English, Alzheimer’s attacks different pieces and parts of the brain, causing those pieces and parts to malfunction and cease operation, therefore, in some cases, the “affects” of Alzheimer’s is the cause of death.

Alzheimer’s and other Dementia’s are classified as “Degenerative Diseases.” Maureen and I wish they would classify them as “Degenerative Disabilities” because the world works to create solutions to live a better quality of life for individuals with Disabilities and it works to help those with Incurable Diseases live more comfortably as they die. Why not build cognitive ramps in our world for Persons Living with Dementias-Related Illnesses LIVE” in our world rather than DIE in our world.

Here are some Facts and Figures from the Alzheimer’s Association.
https://www.alz.org/alzheimers-dementia/facts-figures

  • More than 5 million Americans of all ages have Alzheimer’s.
  • An estimated 5.8 million Americans age 65 and older are living with (Alzheimer’s) Dementia in 2020.
  • Eighty percent are age 75 or older. One in 10 people age 65 and older (10%) has Alzheimer’s dementia.

Where are the statistics of Individuals, like my friends and I, who are Under the age of 65, who are “Living Well” with Alzheimer’s, Vascular Dementia, Lewy Body, Parkinson’s, White Matter, FTD, CTE, MCI?
Do we count?
Are we not as important as our elders?
Where do we fit in the Alzheimer’s equation?


Inquiring minds would like to know.

Until Next Time,
B
Stay Safe and . . . PEACE



Aging with Alzheimer’s

Every year during this time, I start reminiscing about:
* What would I be doing if . . . ?
* Where would I be working if . . ?
* How different would my life be if . . . ?
Things of that sort.

This year, the reminiscing is a bit different and more powerful than previous years. You see, in those previous years, I wasn’t turning 60 years old in 4 days!

When I was a child and I would attend birthday celebrations with my family and extended family, there were a lot of people who turned 60 throughout those years and I would look at them and think, “GEEZ, they are old!” Now that I’m the one who is turning 60, and 60 ain’t that old!!!!

Since my Alzheimer’s Diagnosis 6 years ago, I have been adamant about living the best life I can possibly could live.
I pushed myself to continue doing the things I already knew what to do.
I pushed myself to learn new things, although a few days later, I would not remember what I learned a few days before. That was out of my control but but that didn’t stop me from challenging myself.
I pushed myself to stay socially active, or as active as I could.
The one thing that kept me active was and still is, my advocacy and the love and support I receive. (I USE THAT ENERGY TO KEEP ME GOING!)

Pushing and challenging myself, became a double-edged edged sword. By that I mean, it was good for me but for friends, some family and acquaintances, it became very hard for them to believe I had Alzheimer’s Disease for I didn’t fit the mold, their mold. I DIDN’T ALLOW THAT OR THEM STOP ME)

I have many friends and acquaintances who were diagnosed before me, after me and the same year I was and they all push to keep themselves active and in the moment. They too have all faced the same things I have and they still journey on. Sadly, we have lost some of those friends over the years.

Yesterday morning on CBS Sunday Morning, #GayleKing interviewed 71 year old Olivia Newton-John about battling her third round with #breastcancer. During the interview, GK asked ONJ this question . . . “How do you stay in the moment and stay present and not let it consume you and worry you?”
ONJ Replied . . . “Denial is really good! Newton-John laughed. It’s really healthy! But it was consuming my day. And after a time, I went, ‘You know what? I don’t know what my time is, but I need to enjoy my life. So, I’m going to eat a cookie if I want it. And I’m gonna have a cup of tea if I want it. And if I wanna have a little bit of wine, I’m gonna do that, because the joy of life and everyday living has to be a part of that healing process as well”.

What a great answer! Now I know some will say that denial is not the answer, however, I have to agree with Olivia. She is not allowing her breast cancer (for the third time) to run her life.
It’s not like she is denying she has cancer.
It’s not like those of us living with a Dementia-Related Illness deny we have it, we just choose to live the life we want to live.

We know what faces us at the end but we don’t dwell on that.
Even though COVID-19 has put some restrictions on how we socially interact with one another, we still do that.

I’ve said from the beginning of my Alzheimer’s Journey, I would not allow my Alzheimer’s to define who I am as a person. I would live my life the way I want to live it.

Did I ask for this life? NO!

Is it the life that anyone who is / was living with a Disease that caused or will cause their death ask for? NO!

Am I going to give up on Living My Life the way I want to?
HELL NO!!!

I am going to keep on living the best life I possibly can and when Friday, September 4th rolls around, I am going to continue to LIVE LIFE in the best way possible. Will I live an another 60 years? Well, YA NEVA KNOW!!!

Life is what you make of it and it’s up to you what you want to make of it.

Until Next Time,
PEACE!
B

This is Me!!!

(This blog post is NOT a review of a movie. I am using a specific song from this movie to get my point across. ~B)

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The Greatest Showman is a movie inspired by the imagination of P.T. Barnum starring a wonderfully, talented cast and an awesome soundtrack.

One day ( I really don’t remember when, ……o excuse me for leaving out that detail) I was watching it (again) and I was discovering some new things I either forgot or just overlooked during the past times I viewed the movie.
It was almost like I was watching it for the first time.

It wasn’t the actual movie that was resonating with me but rather the music. If you know me, you know how much I love music and how I use it therapeutically to assist me in ridding myself of my brain fog or just to lift my spirits on dark days.

Anyway, it was getting towards the end of the movie when “The Bearded Lady” played by Keala Settle, started singing her song, “This is Me!” As I was listening to the words of the song, really listening, is when it hit me.

The Greatest Showman - Keala Settle 'didn't want' bearded lady role | Films  | Entertainment | Express.co.uk

The opening lines of the song are . . .
“I am not a stranger to the dark
Hide away, they say
‘Cause we don’t want your broken parts

I’ve learned to be ashamed of all my scars
Run away, they say
No one’ll love you as you are

The biggest difference between those of us who are “Living Well with Dementia” and the “Bearded Lady” is, well, she’s a Lady with a beard. That’s kind of hard to miss. We don’t have any outward signs for anyone to see but when we speak, our Dementia may come out by causing us to lose our words, or just go silent. The reason I love this song is because when she is singing her song, I can feel both her pain and her strength. She was fed up being stigmatized just because of the way she looked.

At that point (and every time after I’ve listened to the song) the tears flowed, lots of tears. It was if she was singing it not only directly to me but to everyone and anyone who has some sort of disability, anyone who has been shunned or just forgotten by the public and/or members of their family, just because, in their eyes, we were now different.

The song continues . . .
When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me

If you have heard me speak before, you have heard me say,
“I have Alzheimer’s Disease BUT it doesn’t have me!”
I don’t allow my Disease(s) to define who I am, because in my mind, I am still me. People that really know me know I AM still me. I don’t know how to be anything else.

The reason this is so powerful for me is because I began, early on, to hear things like, “You don’t look like you have Alzheimer’s!” and “WOW, you speak so well!” or they would ask me in a sort of a hushed tone, “how are you?” or would turn to whoever was with me and ask them, again in a hushed tone as to shield the question from me, “So, how’s he doing?”

I admit, I may have slowed a bit but, as Maureen reminds me, I’ll be 60 next month so it’s a matter of aging. (In my head, I still feel like I’m 40. LOLOLOL)

I guess it would be easier if Alzheimer’s came with a scar or some sort of mark but it doesn’t. It’s an invisible disease so no one can see it and it makes it hard for some folks to accept it when we still look like we always did. The only “outward sign” we do exhibit is when we speak and we lose our words. When that happens with me, I turn to Maureen and she throws me the word and I continue on like nothing has happened but I see the look on other’s faces. It’s a look of sorrow and that’s the last thing I want people to look at me with.

As the song goes . . .
I make no apologies, this is me
!

Please remember this the next time you interact with someone who has a Dementia-Related Illness, any type of unseen Disability or a visible sign of their disability. Treat them as a person, an individual, for that is what they are.
When in doubt, ask yourself, “Self . . . how would I want to be treated if I had a Dementia-Related Illness or any type of illness or disability, visible or invisible.
If you don’t come up with the answer, “I WANT TO BE TREATED NORMALLY”, you may want to ask yourself again.

For those of you that haven’t heard the song, here is the link. as well as the lyrics . . .
https://www.youtube.com/watch?v=CjxugyZCfuw

This Is Me

Keala SettleThe Greatest Showman Ensemble
I am not a stranger to the dark
Hide away, they say ‘Cause we don’t want your broken parts
I’ve learned to be ashamed of all my scars
Run away, they say No one’ll love you as you are
But I won’t let them break me down to dust
I know that there’s a place for us, For we are glorious

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised, I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen I make no apologies, this is me
Oh-oh-oh-oh Oh-oh-oh-oh Oh-oh-oh-oh Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh

Another round of bullets hits my skin
Well, fire away ’cause today, I won’t let the shame sink in
We are bursting through the barricades and
Reaching for the sun (we are warriors)
Yeah, that’s what we’ve become (yeah, that’s what we’ve become)I won’t let them break me down to dust
I know that there’s a place for us, For we are glorious

When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
I am brave, I am bruised, I am who I’m meant to be, this is me

Look out ’cause here I come, And I’m marching on to the beat I drum
I’m not scared to be seen I make no apologies, this is me

Oh-oh-oh-oh, Oh-oh-oh-oh, Oh-oh-oh-oh, Oh-oh-oh-oh
Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh
This is me

And I know that I deserve your love
(Oh-oh-oh-oh) There’s nothing I’m not worthy of
(Oh-oh-oh, oh-oh-oh, oh-oh-oh, oh, oh)
When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown ’em out
This is brave, this is bruised
This is who I’m meant to be, this is me

Look out ’cause here I come (look out ’cause here I come)
And I’m marching on to the beat I drum
(marching on, marching, marching on)
I’m not scared to be seen
I make no apologies, this is me
When the sharpest words wanna cut me down, I’m gonna send a flood, gonna drown ’em out
I’m gonna send a flood, Gonna drown ’em out
Oh, This is me!


Bella, the Wonder Dog

It’s amazing what a difference a little 10lb, 8 month-old puppy can make.

It’s only been a few days but Bella seems to know her purpose. She can already detect my anxiousness, coming to lay across my lap or laying right beside me with her head in my lap, looking up at me with look on her face as if she is saying . . . “I’m right here so you can relax!” What a gift!

We’re working on the commands Deb the Trainer has already taught Bella and we are reinforcing those commands every day. We are also going to continue training with Deb via ZOOM so we can complete Bella’s training.

Bella knows she is here for a purpose and that purpose is mainly to keep my anxiousness at a minimum, to fetch my medicines when needed and replace it them when done. We will start working on that probably later this week. We don’t wan to overwhelm her or frustrate us.

It’s important that an animal has the right temperament and personality in order to fill the role of a Service Animal. It seems that Bella was destined to be our dog from the get-go. From our first interaction she was drawn to us and us to her.

Since COVID19 is not showing any signs of going away and restricting us from mingling with the public in public places, I know she will be a comfort to both of us as we navigate this Pandemic. Not being able to come and go as we please does put a strain on things and that also brings on anxiousness and frustration. I’m sure Bella has her work cut out for her.

You will hear my say, “Our Dog” and not just “My Dog”. Knowing she is a Service Dog, she has become a part of our little family. She has already made a big difference in the lives of Maureen and I and we look forward to her for years to come.

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

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

Fear & Anxiety … A Choice?

One day last week, Maureen asked me to go with her to run some errands. She was going to go to Publix and Home Depot. When she asked me to go with her, I was immediately overcome with fear and anxiety. I’m not really sure what brought it on, but in my mind I felt by walking out the door i was as going to be unsafe.

The strange thing is, just a few days before, we drove from Largo to the Everglades National Park and then to Miami Beach just to, as Maureen put it, “to blow the stink off of us!” Although we are together 24/7, we have a phenomenal relationship and love to take trips to see what we can see. However, just like everyone else, we do have our “moments”. When I say that “my moments” are epic, I don’t say that in a braggadocios way. I can go from being “ME” to a foul-mouthed, son-of-a-bitch, ASS.

I HATE the fact that I act out that way and I don’t make excuses for myself. I know it is partly my Alzheimer’s and Vascular Dementia coupled with my Anxiety, as well as I have never felt that type of fear before. As a matter of fact, I was always looking forward to getting out of the house and going places. It didn’t matter if we were running to the bank, to Publix, or I was just riding with Maureen as she ran some of her errands. I did this because being cooped up in the house all day is reminiscent of when I was living alone for a number of years. I did not want to be reminded of that time for it was unbelievably difficult, more than I ever realized.

Anyways … we didn’t speak to each other for the rest of the day and I spent the night on the sofa, not because of Maureen but because of how embarrassed and ashamed I felt. It was a long, long night.

The next day, my fear was gone but some of my anxiety was still present. That is common for me. My anxiety is an unwelcome, ever-present menace that my Alzheimer’s uses to constantly remind me that my brain is not what it used to be. It’s an ongoing battle.

The next day, Maureen and I had a conversation which was basically me trying to explain what I was feeling the day before. Maureen being Maureen forgave me but what she told me made me unbelievably sad. She said, “I know you don’t mean the things you say but it still hurts when I hear them. The good thing is, I’m getting used to it. I know it’s not “you” that is saying those things, it is your Dementia.”

That felt like a punch in the gut…a very hard punch. It was like she was giving me a pass, a pass I didn’t want or deserve. Here is a woman who opened her life to me, who cares for me, who loves me unconditionally, who runs her own business, Care Giver Support and Resources, out of our apartment, all the while trying to keep everything balanced. The thing is, she never knows which Brian is going to show up each day. It reminds me of the movie, “Sybil” https://m.imdb.com/title/tt0075296/

I’m not saying I have a personality disorder, I’m saying that my mood can change several times in day. I don’t realize it until Maureen tells me. (I ask her to tell me when these things happen.)

My goal is to get more control over these changes, not just for my sake, but for Maureen’s sake as well. She doesn’t deserve all of this but she tells me I’m worth it. I know I am a lucky, loved man but then again she is a very well loved woman!

Until Next Time,

PEACE,

Brian

Somewhere Between the Mashed Potatoes and Strawberries!

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What do you mean Mashed Potatoes and Strawberries don’t go together? Have you ever tried dipping those sweet, delicious strawberries into the creamy, buttery mashed potatoes? No? Neither have I and I doubt I ever will for I can just imagine the taste. YUK!!!

Although the title of this post may make you think I’m going to write about food, you would be mistaken. It’s more like things that don’t seem to go together but as time goes on, they do. You’ll see.
This brings me back to a previous blog post “Changes in Lattitudes, Changes in Attitudes” https://bit.ly/2ZOaY0G where I referenced the opposite traits of the Cheetah and the Sloth. If you haven’t read that post, you should, but if not, it’s OK.

When living with someone who is structured, business minded, intelligent, organized, etc . . . and the other individual is ME, well how could anything go wrong? Throw in 2 different types of Dementia as well as other medical issues, that’s when things get interesting.

Let me explain so you can see the full picture . . .


Maureen wakes up at the crack of dawn, has her Chai Tea, heads into the office and starts working. I, on the other hand, have no idea what dawn looks like (other than the dish-washing liquid) and I will usually wake up long after dawn has turned into mid-morning. I go into the office, barely awake she tells me good morning and then immediately heads straight into telling me her, my, our schedules for the day. I usually have no idea what she is talking about for I don’t remember things from one day to the next, but if she says it’s on the calendar I just nod my head and then head to the kitchen to pour myself a cup of the the Morning Nectar of the Gods, otherwise known as COFFEE, which she had already prepared for me when she got up. All I have to do is flip the switch and that delicious aroma fills the kitchen.

I then sit down on the sofa, open up the Calendar on my phone and try to make sense of what I see on the calendar and try to remember all she said a few moments ago and appreciate all that she does for me. Since COVID-19 as well as some progression of my Alzheimer’s, I would not be able to run my own life as structured as she lays it out for me. She keeps my calendar organized, my medicines organized, my appointments organized, and so much more, all while running her own business. How she does it, I have no idea, but I am so very, very grateful.

So, what does this have to do with Mashed Potatoes and Strawberries? You’ll see.

I remember back in the early 70’s when my sweet, little niece would demand that I sit and watch Sesame Street with her every morning while she ignored her own breakfast and ate mine. Although it drove me crazy sometimes, I look back and I cherish those memories and wish I was back in the 70’s to relive those moments.
Anyway, during one of the teaching moments, Sesame Street characters used to sing a song, “Which one of these things is not like the others”? or something like that.

I bring this up because that’s the way some of the morning conversations Maureen and I have during “MY” first thing in the morning.
Now granted, she has already been up for several hours and her brain is moving at full capacity. Depending upon how I wake up (foggy, dizzy, sleep deprived, etc…) she will start out as she usually does on one topic but then goes right into the next one. The problem is, I’m still trying to digest what she WAS talking about as she is already into topic #2.
I need to say, she is doing nothing wrong. I have asked her from the beginning of our relationship to NOT treat me as if I have Alzheimer’s and she does that very well. When she switches topics. and goes straight into the other one without missing a beat, she doesn’t do it to be cruel, it’s just the way her mind works and because of my requests to not give me any special treatment.

I’m not sure my mind ever worked like that so in a way, I become quite fascinated as to how she keeps things straight. Any way, after she changes the topic, it takes me a little bit to realize that not only did she stop talking about one thing and switched to another, she is already half-way through topic #2. She sees the look on my face, realizes she has lost me and she says, “where did I lose you?” I reply,”somewhere between the mashed potato’s and Strawberries!) That’s my way of saying, “my brain was filling up with information (mashed potatoes) and all of a sudden, in comes another completely different topic (she mixed in the strawberries) that has nothing to do with the topic she was just talking about and it all mixes together into one big lump of instant brain fog. Then here comes the Sesame Street song in my head (Which one of these things is not like the other“?)

“Yes you did but I don’t know where” which is why I started saying, “it was somewhere between the mashed potatoes and the strawberries.” Although they are completely different I’m not really sure how I came up with that.
Welcome into my head.

Other than they both come from the ground, they have never appeared on any menu as any entree’ or on any plate I have ever been served. All I knew it was the first thing that popped into my head that gives an example of two things that were opposite. Plus it always gets a laugh.

I don't know where" which is why I started saying, "it was somewhere between the mashed potatoes and the strawberries." Although they are completely different I'm not really sure how I came up with that.
Welcome into my head.

Maureen and I learn things about each other, sometimes daily. It helps us both to understand the other one better. Will it stop her from giving me my morning briefing? No because I have come to look forward to it. Will it change the way she delivers it to me? Maybe . . . Maybe Not. It depends upon whether or not she remembers. If not, Strawberries and Mashed Potatoes will fly!

I guess what I’m trying to say is, there is a difference between “KNOWING of” someone with a Dementia-Related Illness and “Living 24/7 WITH someone with a Dementia-Related Illness. I know there are experts, or who claim they are experts when it comes to knowing all there is to know about Individuals with Dementia and some do a very good job of explaining things, but, in my humble opinion, if you want to know from the experts, talk to either a Care Partner / Life Partner or go straight to the horse’s mouth and talk with someone who is “LIVING WITH a Dementia-Related Illness.

Either way, be prepared to be served some Mashed Potatoes and Strawberries because if you have met ONE person with a Dementia-Related Illness or One Care Partner, you have only met ONE person!