Month: July 2020

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

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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!

The Fortunes of Friendship

Friends! We’ve all had them throughout our lives. We’ve had good friends, school friends, college friends, business friends and BEST FRIENDS!

The Best Friends are the ones that, if you’re lucky, last a lifetime. Sure, life gets in the way and may prohibit you from speaking to one another on a daily basis, but the communication is still there whenever you can make time. You catch up, find out what the other is doing, laugh, reminisce, and try to make a date and time you can talk again. Sometimes it works, and sometimes life and priorities get in the way. Somewhere down the road you’ll catch up and pick up right where you left off.

What happens when “LIFE” gets in the way and includes illness, maybe not to you but to a spouse, a child, a parent or grandparent. What happens to those friendships?

I can speak only of my friendships and I can honestly say, it has been been a mix of being happy, sad, lonely and surprising. I could easily blame it on many things like moving to Florida 30+ years ago, losing touch with folks who have moved and not know where they went or what they’re doing now, and I’m certainly not going to blame it on my Alzheimer’s. That would go against everything I speak about. By using that as an excuse it would make me a liar and I could no longer say “I don’t allow Alzheimer’s to define me.!”

To be honest, I don’t blame it on anything other than time and life! Those are two things that are in perpetual motion, that is until life comes to an end.

I must say, since my diagnosis in 2014, I have made some pretty remarkable friendships. Some are more of acquaintances, some are near, some are far, some are somewhere in the middle and some are re-acquaintances from decades ago. (Thank You Facebbook and other Social Media).

One such friendship I hold near and dear to my heart is with Sandy Halperin. Because of Alexander “Sandy” Halperin, I became an Dementia Advocate, a member of Dementia Action Alliance, a member of the Early Stage Advisory Group of the National Alzheimer’s Association in Chicago, IL, which opened up countless opportunities to speak at the National Academy of Sciences in Washington, DC, The National Institute of Health (NIH), and many other conferences, symposiums, and Educational Presentations.

On September 20, 2016, Sandy “literally” passed the Advocacy baton to me. He knew he was not able to do as much advocacy as he had been doing throughout the years so he passed the baton to me, with 1 requirement . . .
When it comes time that I am not able to continue my advocacy, I am to choose a recipient to pass the baton to. My name will be inscribed on the baton as Sandy did when he passed it to me. Fortunately it will not be ANY TIME SOON for I still have A LOT TO SAY!!!

The passing of the baton from Sandy to me, September 20, 2016
I brought the Baton to the Great Minds Gala in March, 2019 in Washington, DC where I gave a speech about “HOPE” as it pertains to the future of Alzheimer’s. This is where Sandy first presented the Baton as a beacon of hope.

Sandy has given permissions to Maureen and I and a few other folks to post information on his LinkedIn page. He has 30,000 followers on his page and he did not want the page to be empty of current news, stories and Research. So, we utilize his page to continue spreading the word and we are so thankful for him giving us the opportunity to speak to 30,000 of his closest friends.

Our most recent photo from February, 2020.

Sandy’s friendship is more than just a friendship. We are two people from different backgrounds but it was Alzheimer’s Disease that bonded us.
It was Alzheimer’s Disease that taught us ways to live with the Disease as well as we possibly can. It was Alzheimer’s Disease that gave us a platform to speak from.
It is Alzheimer’s that will keep our friendship going.

We both know that it will be Alzheimer’s that will cause other medical issues to take us away, but we don’t worry about that. We still have a lot to say and a lot to write.

Neither Sandy nor I want sympathy from anyone. We often talk about what we don’t want rather than what we do want. What we do want is for everyone to know we lived a full life. A life of passion, a life of hope, a life of love and a life of friendship!

Until Next Time . . . PEACE!
B